Connexions Spring 2020

conneXions www.fetalhealthfoundation.org

linking the medical & personal worlds

5 things to do before baby arrives preparing for a baby with a complex diagnosis

tiny but mighty:

a closer look at iugr 1

connexions

spring 2020

of fetal syndromatic issues

guiding parenting

in the face of loss

a look at the inside...

6

special feature: texas children's fetal center pioneers in the fetoscopic repair of spina bifida

9

5 non-baby things to do before baby arrives

11

research spotlight: 2019 grant recipient

15

guiding parenting in the face of loss

18

how to pamper your pregnant wife

22

post-surgery: tips for taking care and keeping calm

24

special feature: preventing stillbirths through better fetal heart monitoring

26

finn's story: living with the heart of a warrior

28

making a house a home

30

special feature: diagnosing eli's fetal cardiac mass

32

care 101: preparing for a baby with a complex fetal diagnosis

36

special feature: from diagnosis to delivery: early prenatal intervention improves outcomes

41

stress and your baby: impacts of maternal stress on fetal health

42

special feature: uc davis health - shriners hospital partner to provide expertise to spina bifida patients

45

maximize your phone: best apps for first-time parents

46

special feature: phoenix family travels to denver's world leader in minimally invasive approach for cpam

49

tiny, but mighty: a closer look at iugr

52

pcos + pregnancy: understanding the obstacles ahead

15

9

26 41

cover photo courtesy of Kelly Sikkema on Unsplash

49 connexions

3

letter from the editor...

For 14 years, the Fetal Health Foundation has focused on serving patient families and the medical community with regard to fetal syndrome research, education and awareness. We celebrated a number of milestones last year, namely, awarding 2 research grants to see the projects to completion, interacting with more than 200K people across our social media platforms, reaching over 10K people per month through our blog, and adding around 2K people to our monthly e-newsletters. We directly supported families from as far away as India, Trinidad, Norway and Thailand, and as close as many families in our own backyard and across the United States. For the first time ever, we initiated and celebrated National Fetal Syndrome Awareness Month during August, a month dedicated to sharing stories of hope from families who have journeyed with a fetal syndrome, stories of loss from those with babies gone too soon, and stories of research and medical updates from within the fetal maternal health community. We also worked to improve our website, adding and updating 10 fetal syndromes to our online repository. Each of these outreach efforts equals more people reached and made aware of fetal syndromes.

Contributors: lorri sisemore kevin zelenka heather strief katie hagler erin cornett talitha mcguinness kris louis dana degan erin zinkhan, md paula joyce

This year, the Fetal Health Foundation is embarking on a new journey to continue growing our efforts in education and awareness. By collaborating with the Fetal Therapy Think Tank, a diverse group of medical and industry leaders dedicated to improving fetal diagnosis and therapy development for the fetal maternal medical community, we become a much larger, more experienced organization, able to offer even more expertise to research efforts and patient families going through a very dark time. If you are part of a group or organization interested in joining this collaboration, I encourage you to learn more about all that it entails.

You may do so here.

Whether you are a longtime supporter, a patient family we have helped, or a new face to the Fetal Health Foundation, I urge you to stay connected and continue your support of our growing organization so that we may continue to reach and assist families when they need it most. Craziest of all is that we have already supported half the number of families we supported in all of last year. The need is still great.

For all of your past and future support, we thank you and wish you a safe and healthy year ahead!

4

connexions

Connexions magazine is an award-winning, annual digital and print publication of the Fetal Health Foundation, a nationally registered 501(c)(3), non-profit organization based out of Colorado and North Carolina.

You can follow the Foundation through monthly newsletters, on our blog, and social media.

cristiana caudill 7/1/2018 abs

lauren kaneshiro 3/24/2019 ttts

emily 6/28/2017 hlhs

miley 10/20/2016 ttts

charlotte ttts + abs jace niland 12/14/2017 luto

quinn - ttts

in honor of all the babies gone too soon.

fetalhealthfoundation.org

kallie beth palmer 7/29/2006 ttts

special feature

texas children’s fetal center® pioneers in the fetoscopic repair of spina bifida Successful surgery paves way for remarkable outcome Ashley and Jason Andruss were thrilled to find out they were expecting just a few months into their marriage.

They excitedly began planning the nursery and thinking about what the future held for their child.

Four months into the pregnancy, however, their doctor called with distressing news. An ultrasound showed signs that their child may have spina bifida, an opening in the middle of the baby’s spinal cord that was likely to limit movement from the knees down, possibly from the waist down, and may cause hydrocephalus, developmental delays, kidney and bowel issues for life.

“It’s emotional whiplash,” Ashley said. “All of the hope and excitement turns into anxiety and trying to figure out how to give your child the best options in life.”

special editorial submitted by friend steward partners at texas children's fetal center® 6 connexions

Residents of Singleton, Texas, Ashley and Jason extensively researched fetal centers, procedures and outcomes before deciding what to do next. They learned Texas Children’s Fetal Center developed a new fetoscopic procedure for spina bifida that could reduce the chances of hydrocephalus, preserve the motor functions a child currently had, and reduce the invasiveness and risks associated with cutting the uterus open midterm. People were traveling across the country, even internationally, to Texas Children’s to undergo or learn how to perform the procedure.

Although it was only 90 minutes from home, having this surgery at Texas Children’s would require a big commitment. If Ashley qualified – based on factors such as the position and condition of the baby, the lesion and the placenta – she would have to relocate to Houston for the remaining months of her pregnancy and accept certain risks that go along with any fetal intervention.

“We prayed about it, weighed all the risks and benefits, and had certain questions we needed answered, but my husband and I wanted to do whatever we could to give our child the best life possible,” Ashley said. “We didn’t want to have any regrets or wonder what their life might’ve been had we just done the surgery.’”

On Feb. 13, 25 weeks and 3 days into Ashley’s pregnancy, Ashley became the 23rd person in the U.S. to undergo the experimental fetoscopic two-port procedure.

The surgery proceeded without complications, and Ashley was released after only one week in the hospital. She spent the next 3 ½ months in an apartment in Houston, on bed rest except during doctor’s appointments.

Family members rotated staying with her during the week so that Jason could continue to work.

One thing the Andrusses especially appreciated was the team’s ability to keep the baby’s gender a secret.

“With everything going on with this pregnancy, waiting until the day of delivery to find out if we were having a daughter or a son felt like the one thing we could control,” Ashley said. “Everyone knew the sex and there were countless opportunities to let it slip, but it never did.”

As Ashley neared the 39th week of her pregnancy, her water broke in the night. The next day, she gave birth to a healthy 7 lb. 15 oz. baby girl named Olivia. After spending 8 days in the NICU for monitoring, the Andrusses were able to go home.

All along, there were signs to suggest that the surgery was successful. Six weeks after the surgery, a fetal MRI showed relieved pressure in her brain.

After birth, Olivia had strength in her lower limbs and full sensation in her toes. But it wasn’t until she was 2 months old – suddenly more active and alert, kicking and pushing up – that her parents breathed a huge sigh of relief.

They were overjoyed to celebrate another big milestone when Olivia started walking at 18 months, just a month or two outside of the normal window for babies to walk. Today, Olivia is a happy and healthy 2 ½ year old who “talks up a storm, loves to climb and is as smart as a whip.”

“After that first call from my doctor, I never imagined I’d have the 2 ½ year old that I have,” Ashley said. “We still face obstacles that all spina bifida patients face, but with each day that passes, we are hopeful that we’ll continue to beat the odds.

And that Olivia will continue to be a ray of hope for what can be.”

About fetoscopic repair of spina bifida surgery Developed by Dr. Michael Belfort, Ob/Gyn-in-Chief at Texas Children’s Pavilion for Women, and Dr. William Whitehead, Pediatric Neurosurgeon at Texas Children’s Hospital, fetoscopic repair surgery for spina bifida is typically performed between 19 and 26 weeks of gestation.

Patients must undergo a comprehensive evaluation of their pregnancy and meet

The Fetal Center team carefully monitored mother and baby’s progress and kept the family well informed as the weeks ticked by.

“Having someone that can fully explain all the unknown variables to you, and who you know will be there to get your family through it, no matter what, it puts you much more at ease about what you are doing.”

(left to right) Andruss family with Dr. Belfort; Olivia at 21/2 years old

connexions

7

specific criteria to qualify for the surgery. Once a patient has visited the center for evaluation and is qualified for the procedure, they meet with fetal specialists to discuss the risks and benefits of the procedure and help the patient decide the best treatment approach for them. If they opt for the fetoscopic procedure, the surgery is scheduled.

During the procedure, the mother is given anesthesia and her uterus is exposed and lifted to allow two 4-millimeter minimal incisions to be made in the uterus and fetoscopic ports inserted. Amniotic fluid is then removed and replaced with carbon dioxide gas to inflate the uterus and improve visualization. A small scope with a camera on the end and tiny surgical instruments are then inserted into the uterus through the ports. Guided by ultrasound, the surgeon closes the defect, protecting the fetal spinal column and nerves from infection and injury for the remainder of the pregnancy.

The uterus is returned to the abdomen, the abdominal incision is closed and gestation resumes.

Following the procedure, the mother will stay in the hospital for 5 to 10 days. Mother and baby will be closely monitored for the remainder of the pregnancy, so it important that they are within a few minutes’ drive from Texas Children’s at all times.

Although Texas Children’s Fetal Center surgeons have significant experience in both the open repair method and the fetoscopic method, the positive outcomes of the fetoscopic method has led to the majority of recent spina bifida patients opting for the less invasive surgery. As of the beginning of 2020, Texas Children’s has completed over 70 such repairs.

“The fetoscopic repair offers the same improved outcomes for the infant after birth as open fetal surgery, with significant additional benefits that come with using a less invasive approach,” Belfort said.

Benefits such as: • An opportunity for vaginal delivery in current and future pregnancies. The openhysterotomy approach requires a cesarean delivery. More than 50 percent of our fetoscopic patients deliver vaginally.

• Reduced risk of uterine rupture. If vaginal delivery occurs, reduced risk of complications related to uterine scar thinning or abnormally invasive placenta (percreta, accreta, increta) for any subsequent pregnancies.

• Longer gestation, with an average age at delivery for fetoscopic patients of 37-38 weeks.

In the latest study results published

by Texas Children’s Fetal Center, at 12 months old, only 35 percent of patients undergoing the fetoscopic procedure had ever required a shunt. And by 30 months, 90

It’s with great pride and privilege that Texas Children’s Fetal Center cares for patients like the Andruss family, delivering the highest quality of care across the full spectrum of needs, for the best possible outcomes. To learn more about Texas Children’s Fetal Center, please visit women.texaschildrens.org/fetal or call 832-822-BABY (2229) with any questions you may have.

8

connexions

percent of fetoscopic patients were walking, either independently or with orthotics or devices.

For current volumes and outcomes information please visit women.texaschildrens.org/ fetaloutcomes.

About Texas Children’s Fetal Center Since 2001, Texas Children’s Fetal Center has been at the forefront of developing new fetal procedures to treat devastating conditions like spina bifida, lower urinary tract obstruction, congenital diaphragmatic hernia, congenital heart defects, twin-twin transfusion syndrome, and more.

It is one of few centers in the United States to offer the full spectrum of fetal therapies to patients. Known for pioneering advanced treatments including EXIT-to-resection procedures and fetoscopic versions of standard open fetal surgeries, Texas Children’s Fetal Center offers dedicated support for every family. Expert treatment is paired with a clinical coordinator highly trained in meeting the needs and answering the questions of patients with fetal anomalies.

5

non-baby things to do before baby arrives by erin cornett After the initial shock that you are becoming a parent has settled in, you'll soon become consumed with wondering if you have everything you need for the baby or babies.

Checklists of must-have items, baby shower gifts, and Amazon orders can make for a mess of cribs and other furniture, blankets, clothing, and towers of diapers and wipes.

Materially, you've got it all covered and then some, but it's easy to forget about other ways to prepare for the baby's arrival, things that do not even really have to do with the baby at all.

Remember, although your life seems to be all about the new addition coming soon, there are still other obligations to uphold in your general sphere of life. There are all sorts of things you had to worry about before children, and will still need to keep on your radar, even once your baby arrives. Here are five things to work on other than baby prep before the due date that likely

haven’t yet crossed your mind (you can thank me later).

Stock up on freezer/ non-perishable foods

Here are a few necessary items you will want to have on hand: -Toilet paper

Once a baby is born, visitors will come in and out of your home for visits for weeks (possibly even months, if you have a lot of close friends and family). You begin to worry more about feeding groups of people, and may overlook pantry or freezer essentials for your every day needs. Something as small as a couple of microwave dinners or easy to heat soups can be a big help to you in a moment of little (and precious) time.

-Hand soap

Here are a few items you may want to keep in your freezer or pantry:

Stock up on house supplies

The last thing you want after feeding a baby at 2 am is to go into the bathroom, only to realize someone forgot to buy more toilet paper.

Stocking up on household items is an easy way to make sure you have everything YOU need so you can focus on everything THEY need.

-Paper towels

-Hand sanitizer

-Disinfectant wipes -Dish soap

-Facial tissue

-Laundry detergent

-Dry shampoo (for when you won't be able to wash your hair) -Food for your fur babies

-Your favorite snacks and drinks -Cans of soups -Frozen single meals -Boxed Rice and Mac-n-Cheese -Breakfast cereal or oatmeal -Granola, protein or cereal bars -Frozen pizzas or lasagnas -Nut butter for crackers or fruit

connexions

9

You may even wish to prepare some crockpot or instant pot meals in advance, so that once the baby arrives, you'll have a nice stockpile in your freezer from which to pull for dinner.

Deep clean your house

There is nothing that you and the new baby are going to love more than a clean house. A lot of people push this off, saying “I’ll do it before they are crawling”. Those are the parents who don’t realize how little time a person really has when the baby actually arrives. Doing it before they come will help save you from scrambling later. There are three tricks to getting it done now.

Do it in steps. This means room by room, so just focus on one area at a time. You may not clean all of the floors today, but just accomplish the kitchen. You can even break it down into smaller portions. Instead of cleaning and organizing all of the cupboards, focus on just the lower ones today. Save the upper cabinets for the next time.

The earlier in your pregnancy that you start at this, the more you’ll accomplish. Remember, it’s only going to get more difficult as time goes on in the pregnancy. You could end up with a complicating circumstance that lands you on bedrest halfway through. If you are 34 weeks pregnant, scrubbing a shower is not going to be the job for you. Have you just received the news that you’re expecting? Now is the time to start. Pick one day on the weekend where you and your partner can work on a project together. The house belongs to you both and you both will appreciate

how clean it is once the baby arrives and you can focus on other, more important and demanding, things.

The biggest trick to deep cleaning a house while pregnant? ENLISTING HELP. It seems nothing is more exciting than when a new baby arrives, and even more exciting is when twins or more are involved.

I found that with that excitement comes the phrase “If you need anything, let me know”. Don't naively dismiss these offers. I made the call out to my family and they delivered.

So rally up your troops, put together a task list, and have them strap on their rubber gloves and get to work preparing your little nest.

Clean out your phone

I remember thinking to myself “I will never be one of those new moms that overflows their phone with baby pictures”. Then I became a new mom. Within a few weeks, my phone storage was full and I didn’t want to delete anything.

If you are like me, then your phone is probably filled with vacation pictures from 2 years ago, pictures of your dog or cat, and too many pictures of meals you don’t even remember eating. Snap shots like these can hold many wonderful memories that you don’t want to lose forever, but they can also hold all of the storage space you will want for the new baby's milestones and memories.

Try backing them up to a home computer, an external hard drive, or even Google Photos or The Cloud.

Cleaning out your phone doesn’t always mean deleting media files, either. Take a look at the apps that

are currently on your phone and pick the ones you no longer use or need as part of your every day life. This will increase your phone storage, as well as make room for new baby apps that may prove especially helpful sooner than later.

Treat yourself to a “Mama/ Daddy Needs This” Day

If only I knew the amazing experience that is prenatal massage before I was eight months pregnant with twins. I would have had one every other week! Many practices will even offer a discount if you book bi-monthly or even once per month, so be sure to ask.

Whether you are pregnant with one or more, every parent should take advantage of a little “me time” as you're eagerly awaiting the baby to come along. Here are a few suggestions to get the ball rolling: -Get your hair done

-Schedule a massage -Treat yourself to a manicure and pedicure -Enjoy a night out with friends

-Schedule a night out with your partner at a play or movie -Book a round of carefree golf -Plan a lazy day filled with pajamas, warm drinks, movies and fur baby cuddles (they're going to miss the routine, too) Becoming a parent is thrilling and nerve-wrecking all at the same time. By following these five “nonbaby” things to do before he or she arrives, you can breathe a little more easily and feel a little more prepared.

Erin is a 30 something mom of twin girls; Eliza and Olivia. After taking a step back from her career in Digital and Social Media Marketing, she quickly discovered raising twins was the life for her. Erin resides in Mid-Michigan with her husband, two daughters and two Pomeranians. As the “keeper of chaos” she is a Pure Michigander who has a passion for writing, traveling and a new tolerance to Baby Shark.

10

connexions

research spotlight

2019

grant recipient

HyDROPS Study Continues with Promising Life-Saving Outcomes Over the past 16 months, Dr. Teresa Sparks' research team at UCSF has made significant progress with the HyDROPS study (Hydrops: Diagnosing and Redefining Outcomes with Precision Study).

The total enrollment has increased to 118 cases in that time. This far exceeds the original goal of enrolling 20 cases in the first year of this project and 40 in the second year. This success has been rooted in the ability to enroll participants on a national level, even outside of the group's established collaborating sites. The research team has also seen an incredible level of interest from both participants and providers, and are thrilled to be contributing more knowledge about NIHF at an accelerated pace.

In February of 2020, Dr. Sparks and team presented preliminary findings in oral format at the Society for Maternal-Fetal Medicine conference, and the project was awarded the 2020 Dru Carlson Memorial Award for Best Research in Ultrasound and Genetics. In terms of diagnostic yield, the team has identified a clear or likely genetic

Dr. Sparks and team members accepting the award; SMFM presentations

disorder underlying NIHF through trio exome sequencing in 37% of cases. Approximately 1/3 of these were RASopathies, a group of genetic disorders caused by changes to a pathway important for cellular signaling and growth. In addition, researchers saw numerous other types of genetic disorders such as inborn errors of metabolism, primary lymphedemas, cardiac disorders, mitochondrial disorders, hereditary anemias, and many others.

Notably, all diagnoses made through this project had important implications for improving the care of these pregnancies and infants. Further, this research enables the group to understand both the full spectrum of genetic disorders underlying NIHF and the ways in which they present in utero. Only through this more thorough understanding can we improve our approach to prenatal diagnosis and care, as well as work toward the development of novel and targeted in utero treatment approaches to optimize outcomes for pregnancies with NIHF. Moving forward, we will continue to enroll broadly, apply thorough genomic sequencing techniques, and continue our multidisciplinary collaborations with the goal of developing specific in utero treatments for genetic disorders leading to NIHF. To learn more about the Fetal Health Foundation's Research Grants, visit fetalhealthfoundation.org.

connexions

11

Delivering the best care when it matters the most Your needs are unique, and so are your baby’s. That’s why our experts work together to provide world-class fetal care, so you and your little one can live a healthier life.

With specialists in maternal-fetal medicine, advancements in fetal surgery, and a renowned research program providing new hope for expecting parents, you’ll always have an expert team behind you in your pregnancy journey with UC Davis Health Fetal Care and Treatment Center.

Learn more about our fetal care services, and how our expertise can support your growing family.

Proud to be: ■

■

■

The West Coast’s first level I Children’s Surgery Center, verified by the American College of Surgeons (ACS) Home to inland Northern California’s only fetal and pediatric heart center The region’s ONLY level IV Neonatal Intensive Care Unit

For more information visit

fetalcare.ucdavis.edu 12

connexions

Our Mission The Multiples of America aka National Organization of Mothers of Twins Clubs is a 501(c)(3) non-profit organization dedicated to supporting families of multiple birth children through

support, education, and research. In partnering with local

www.multiplesofamerica.org Multiples of America Executive Office 2000 Mallory Lane Suite 130-600 Franklin, TN 37067-8231 Email: info@MultiplesofAmerica.org

support groups, health care providers, researchers, and educators, and with the highest standards of integrity, respect and professionalism, we endeavor to aid parents of multiples and to raise public awareness of the unique qualities of multiple birth families.

connexions

13

guiding parenting in the face of loss: an appeal to care providers by lorri sisemore

14

connexions

E

Each year in the US, nearly 40,000 babies are either stillborn or die within the first month of life. While there is a plethora of parenting resources available, very few address the issue of parenting in the face of loss. Though it may initially seem counterintuitive to encourage parenting in these situations, it greatly improves the psychosocial outcomes for these families when we facilitate this type of memory-making.

• Introduce the idea of photographs early and often.

Contact NILMDTS to see if a photographer is available and encourage parents and caregivers to take as many photos as they wish.

Over the past 15 years, Now I Lay Me Down to Sleep has interacted with tens of thousands of families, hospitals, and care givers. What we’ve found is that families rarely regret what they did, but they often regret what they didn’t do. We often hear from parents about the things they wish they would have thought to do ---like brushing their baby’s hair, dressing their baby, and holding their baby as long as they wished.

• Don’t forget to capture photographs of the details of the day --- the room signage, flowers, memory box items, stuffed animals, special clothing, and anyone you may have had share in this special time, etc.

come. The journal Illness, Crisis & Loss says that remembrance photography “did not simply produce mementoes, but invited families into a parenting role, to celebrate their baby’s life, to tell their story, and to help make meaning of their experiences in an often overwhelming and chaotic medical space.” (Martel & IvesBaine, 2014)

Whether a family’s loss is expected or not, parents and family members often find themselves in shock in those moments. They often forget to pull out their phone or a camera, or they don’t even fully realize that they can hold their own baby. As care providers of these mothers and babies, it’s important that we encourage them to parent their baby in those short moments or hours that they have with them.

Grieving parents look to us to reassure and guide them during these delicate times.

Having these moments is especially important for parents in order to help construct the future identity of their family.

Many loss parents are faced with difficult questions down the road, such as “Do you have any children?” or “How many children do you have?” These are difficult questions to answer because, as outlined in an article in the journal Death Studies, “Parents facing early child loss - perinatal death - suffer no less, yet they are faced with the additional burden that their baby is not socially recognized as significant.” (Blood & Cacciatore, 2014)

Naturally, photographs of these moments serve as a bridge to this type of parenting, as well as offer healing for years to

In order to facilitate as much memory-making as possible in those delicate first moments, we recommend the following:

• If your facility offers care packages for families experiencing loss, introduce that early and go through the contents with them so that they understand everything inside and can incorporate them into the memory-making process.

• Call their baby by name and treat them as you would any baby. Point out features of the baby --- cute noses, tiny hands, curly hair. Refer to family members as ‘mom’, ‘dad’, ‘grandma’, ‘grandpa’. This may be the first time they’ve ever heard themselves called by those names and it will mean the world in validating the life of their child.

• Encourage parents to hold their baby as long as they want.

• Have parents dress and diaper their baby, bathe their baby, and brush their baby’s hair.

• Take handprints, footprints, and molds (if your facility offers them). Make multiple copies.

Always encourage them to take pictures above and beyond what NILMDTS or you as the caregiver takes. They can never have too many photographs, especially as memories from this day will fade

connexions

15

in time. Let parents know that they never have to look at these pictures or keepsakes, but that they will always have them if and when they are ready to look back on this special time.

Suggestions like these and many more can be found in our new course Remembrance Photography as a Best Practice in Perinatal Loss Populations. This continuing nursing education activity was approved by the Colorado Nurses Association, an accredited approver by the American Nurses Credentialing Center's Commission on Accreditation. This course is ideal for any practitioner that deals with patients experiencing perinatal loss and will help them to reach families that NILMDTS is unable to serve due to availability, time of day, condition of the baby, or shortened timelines.

With the knowledge and skills taught, providers will be able to give their bereaved parents the best patient experience possible under the circumstances. More information can be found at www. nowilaymedowntosleep.org/ continuingeducation.

How to Find a Photographer NILMDTS will assist in locating a local affiliated photographer to capture images for a bereaved family. It is recommended that you call as soon as possible, even during the admission process, for the best chance of locating an available photographer. Local photography contacts can be located on the NILMDTS webpage, under the Find a Photographer tab.

Guidelines for Services At the request of the parents or medical staff, we will have a NILMDTS affiliated photographer, if available, come to the hospital

16

connexions

or hospice location for a private and sensitive photography session shortly after delivery.

Our affiliated photographers are dedicated to making the photography session as loving, sensitive, and private as possible. When searching for a local NILMDTS photographer, or to learn more about the process, visit www.nilmdts.org for contact information in your area.

NILMDTS photographers provide the free gift of professional quality portraiture. Gently retouched black and white or sepia toned heirloom quality portraits are delivered digitally.

Retouching If a NILMDTS photographer is not available, please utilize the Posing Guide for Hospitals and Posing Poster located on the NILMDTS webpage. The guide includes instructions for submitting images for retouching to the NILMDTS organization. Providers are also welcome to complete our new course, Bereavement Photography as a Best Practice in Perinatal Loss Populations, for direct access to our retouching pipeline. More information on this continuing education opportunity can be found at www.nowilaymedowntosleep. org/continuingeducation.

Sources: Death Stud. 2014 JanJun;38(1-5):224-33. doi: 10.1080/07481187.2013.788584.

Epub 2013 Nov 11.

Martel. S., & Ives-Baine, L. (2014).

‘Most prized possessions’: Photography as living relationships within the endof-life care of newborns. Illness, Crisis, & Loss, 22(4), 311-332.

testimonials

"As a labor and delivery nurse, the hardest days are the ones where we send families home without the sweet babies they have longed for, nurtured, and loved. The services provided by NILMDTS allow me to assist in supporting those families by honoring the little lives lost.

Working with NILMDTS fosters the preservation of memories for these families during a whirlwind of heartbreak.” ~Ada Murdock, Registered Nurse "I don’t know the name of the nurse who took a few photos for us, but I am forever grateful that she was there.

To all the nurses and hospital staff that step out of your roles and into the rooms of grieving families to capture the few moments we have with our babies, thank you!!!" ~Krysten Rivera, patient + Jakob's Mommy

additional information on NILMDTS

Now I Lay Me Down to Sleep (NILMDTS) gifts heirloom remembrance portraits to parents experiencing the death of a baby. Since 2005, over 50,000 families from around the world have received photographs free of charge from NILMDTS.

We’re With You Every Step of the Way Personalized Patient Navigation Genetic Testing & Counseling Fetal Intervention

FULLY INTEGRATED CARE FOR YOU AND YOUR BABY We understand that being diagnosed with a high risk pregnancy can be emotionally and physically difficult.

From the moment you meet our physicians and patient navigators, you’ll experience our dedication to the best possible outcomes for you and your baby.

We are a hospital like no other: • Highly experienced and comprehensive Maternal Fetal Team

• Ranked nationally in the TOP 5% FOR LABOR & DELIVERY AND OB/GYN

• EXCEEDS THE HIGHEST STANDARDS in maternal care and high-risk deliveries

• WORLD LEADERS in Neonatal Minimally Invasive Surgical Treatment Options

• The only hospital in the Rocky Mountain Region with a LEVEL IV NICU AND LEVEL IV MATERNAL PROGRAM

• Nearly 125,000 patients referred to our Maternal Fetal specialists for evaluation in the last 5 years

CenterforMaternalFetal.com 720-754-RMHC (7642) Conveniently located in Denver, CO

S

So, you just found out that your wife is pregnant.

You may have even received the news that it's twins. Whether it's with one or more, and now that the initial shock has worn off, it’s time to start thinking about how you are going to help her get through this pregnancy.

There are going to be some serious changes --- and I don’t just mean AFTER the babies get here. Her hormone levels are through the roof right now. Her emotions can range from feeling overjoyed and excited about having a baby, to being scared of everything to come as the delivery date approaches. That means that she’s going to be a bit more emotional and may not seem like the woman you know. Trust me, she still is. Her body is simply working overtime right now to help develop the baby inside of her.

The good news is that you can help her survive the next 8.5 months. Here are 15 ways to sweep her off of her swollen feet and make a real difference!

making a difference: tips on pampering her throughout pregnancy by kevin zelenka

18

connexions

Use Your Words When it comes to supporting our wives and partners, the first thing to remember is that we were given a voice for a reason, and that reason is now. This is no time to keep quiet.

Tell her she’s beautiful. Flood her with compliments. Keep in mind that she is starting to feel the effects that pregnancy can have on the body. She’s going to be tired, her body may ache, and she may even have self-image issues as she begins to put on weight and her body starts to change. Even saying something as simple as 'I love you' or 'I'm here for you' goes a long way in making sure she feels wanted and needed during the pregnancy.

Be Involved Did you know that something as simple as going to your wife’s doctor appointments can make a world of difference to her? You do now! Even if you can’t attend every single visit, making it a point to visit her perinatologist

with her shows you're part of the team. If you can’t be there, at least inquire as to how the appointments went. Find out what her doctor said, how the baby looks, and if they are growing correctly, etc. She should come home with ultrasound photos, as well. If you don’t ask to see them, you’re missing out. I used to keep one in my wallet!

Empathy Everyone knows that men are problem solvers. It’s just what we do. Sometimes solving the problems isn’t what your significant other needs, especially in the emotional state she’s obviously in. Let her vent.

Listen to what she’s actually saying. Trust me…if she needs you to actually fix what’s broken, she’ll let you know.

Get Her What She Needs I take that back. Get her what she wants! This means that if she wants comfortable shoes, or more maternity clothes, or a special pregnancy pillow that costs $85.00, don’t ask questions, just do it. My wife’s feet swelled so much when she was pregnant with our boys, that the only thing she owned that she could wear were flip-flops. This wasn’t a great alternative, as it was winter towards the end of her pregnancy. Our solution was to buy her some pull-on boots that were 2 sizes bigger than what she normally wore. We knew that after she delivered, and her feet went back to normal size, she’d never use them again, but that was alright. They served a major purpose in those moments to helping her feel more comfortable and confident.

Live Her Life Remember that she’s going to have to give up a lot for the next ¾ of a year. No alcohol. No

caffeine. Fewer nights out. And lots of rest. These aren’t changes she’s making for herself; they are things that she’s doing for the health of the baby. As this is YOUR baby, too, it is only fair that you make some changes in order to show support. Trust me, that big margarita will wait until after the baby is born. That’s when you’re going to need it. If you can’t walk away from that vanilla latte for 9 months, at least don’t indulge in front of her. That’s just not cool.

Romantic Dinner for Two This is a must. And forget about your excuses. “My wife doesn’t want to go out.” You can do a romantic dinner right at home.

Break out the candles and get cooking! “I don’t know how to cook.” That’s okay. Do you know how to put things on a plate? Pick up her favorite dinner on the way home from work, and grab some flowers while you’re at it. “I work the nightshift.” Dude, dinner is just a mere suggestion. Breakfast and lunch can be romantic, too.

“She has really bad nausea, and doesn’t like to eat anything.” Well, you can…um. I got nothing, except that this too, shall pass.

Creating Memories Every new mother wants to remember their pregnancy. Even the ones that have an awful time (think morning sickness), still want to be able to document it for their child’s sake. You can help. Take monthly photos of her growing belly. Buy a special photo album and put them and other pregnancy photos and keepsakes in them. This is something that almost every new mom WANTS to do, but few get a chance to accomplish. It’s now your job to help her with the task.

Play Handy-Man Hal Get your mind out of the gutter --- this isn’t some kind of weird role-play. We’re talking about all of the things that have been on

the “honey-do" list forever, along with all of the new wish-list items for things to come. Start working on things like putting the new crib together, painting the nursery, and getting the car seat installed.

All of this should be done before your baby gets here. Why? Because, trust me…you won’t have time once they arrive.

Give in to the Cravings Do you know how they always talk about the weird food cravings that women get when they are pregnant? They really are a thing! My wife craved beef jerky.

I made a whole bunch of it at home for her (because that stuff is expensive!), and then she didn’t crave it anymore! I also recall going to a local convenience store early in the morning because my wife craved Chex Mix. There are so many things that she’s probably given up to be pregnant.

If she decides to eat pickles and ice cream, together, then who are we to judge? Just go with it!

Be Open Minded Is it funny that the biggest argument people get into before they have a child is what to call it? Parents of multiples are at an even bigger disadvantage, as they are tasked with agreeing on TWO names. You can calmly and rationally come to an agreement on what to name your children.

Compromise is the key here.

Maybe the issue is that someone wants to honor a relative by using their name. Why not pick a name that you agree on for the first name, and utilize the family name as a middle name?

She likes classic names, and you are thinking outside of the box.

Middle names are great for those names that don’t quite fit the norm. My wife and I both had some family names we wanted to use. We put together a list of

connexions

19

names we liked, whittled it down to two that became or sons’ first names, and then used our family choices for their middle names.

Take a Pregnancy + Parenting Class Together You never realize how much you don’t know until you have children for the first time. I thought I knew quite a bit about parenting from my experience as an older brother and babysitter.

I changed more than my share of diapers growing up, and I figured parenthood would be a breeze. Thank goodness my wife and I took a class together before the boys were born. All of the questions that I didn’t even realize I was going to have were answered before I even had a chance to ask them. There was still so much we had to learn the hard way once the boys came home from the hospital, but the class gave us a good head start.

Realize that Morning Sickness isn’t Just in the Morning No one likes to see their partner sick. At least with a cold or flu, a little medicine and rest, and they are good as new within 48 hours. For some women, morning sickness lasts up to six months.

Sometimes it only happens at the beginning of the pregnancy.

For others, it can last well into the second trimester, or longer.

Despite being called morning sickness, it can rear its ugly head any time of the day, and for no reason at all. No one knows what causes it, but there are things you can suggest to help.

1. They say that many small meals over the course of the day are better than three big ones. By snacking throughout the day, there’s less risk of your stomach being empty, which sometimes causes nausea. It’s called “morning sickness” because it happens most often in the morning when you wake up. Keeping crackers next to your bed for when you first wake up is another idea.

2. Help her steer clear of fatty foods or things that have a high level of spice. It’s recommended that Mom avoids overly sweet foods, too.

While this may make indulging on foods that she’s craving difficult, she’ll be happier in the long-run.

3. Strong smells can trigger nausea.

Refrain from colognes and perfumes, and look into unscented forms of cleaning products until it passes.

4. If she is taking prenatal vitamins, have her try taking them at night.

Sometimes the iron in them can react if taken on an empty stomach.

Book Her a Pregnancy Massage Nothing relaxes someone quite like a massage, and pregnant moms are no exception. Remember, they are carrying a lot of extra weight, and that equals discomfort on the back, legs and feet. Many spas have special treatments for soon-to-be moms, in all stages of pregnancy. Maybe you can make a day of it. A massage, pedicure, and lunch may be just what the doctor ordered. Speaking of her doctor, be sure to get approval before booking. Another great secret? Mom’s spa day may even

be covered by insurance, as some insurance companies cover massage therapy.

Talk to the Baby As strange as it sounds, and as weird as it will sound when you do it, it’s actually been proven that talking to your baby during pregnancy can give them a sense of security and ease any stress while in the womb. It can also help with speech and language development. Talk to them. Read to them. Play them music (they say slow and soothing, so slash metal is probably off of the playlist for now).

Help Make the Coming Months as Stress-Free as Possible 1. Take as much off her plate as possible. Something as simple as doing some baby shopping (like bottles, diapers, and other necessities), could be a huge help.

2. Help her prepare for the trip to the hospital by helping pack her go-bag (it’s also a good idea for you to have one, too!).

3. Remember, patience is key.

This means that if you have to bite your tongue, do it. Take a breath, walk away. Those little disagreements that you had prepregnancy have a big impact now.

Becoming a father isn’t difficult.

Being a good one, and a good husband or partner to someone who is pregnant on the other hand, takes some work. Are you up for the challenge? Practicing some of these tips will help make you the super man that we all know you can be!

Kevin Zelenka is a freelance writer, the editor of the twin parenting site FamiliesofMultiples.com, and the father of fraternal twin boys. Originally from the Midwest, he, his very patient wife, and his rambunctious sons now all live in Henderson, Nevada. When he’s not volunteering at the boys’ school or helping with homework, he can be found online brainstorming article ideas with one of his writers. Although he admits that parenting twins is one of the hardest challenges he’s ever had, he says it’s also one of the most rewarding.

20

connexions

All the Care Your Baby Needs The right expertise, from before birth to beyond.

High-risk pregnancies can be complex. Here, you and your baby get a full spectrum of some of the best maternal, fetal and neonatal care in the nation, from diagnosis through delivery and beyond — all in one place.

To learn more, visit childrenscolorado.org/Fetal-Care

Children’s Hospital Colorado complies with applicable Federal civil rights laws and does not discriminate on the basis of race, color, national origin, age, disability, or sex. • ATENCIÓN: si habla español, tiene a su disposición servicios gratuitos de asistencia lingüística. Llame al 1-720-777-1234. • CHÚ Ý: Nếu bạn nói Tiếng Việt, có các dịch vụ hỗ trợ ngôn ngữ miễn phí dành cho bạn. Gọi số 1-720-7771234. CFCC-180144A-2020-02

Our care for your baby begins long before birth.

To learn more visit childrenswi.org/fetalconcerns

Fetal Concerns Center connexions

21

post-surgery: tips for taking care and keeping calm by talitha a. mcguinness

O

Once the whirlwind of your fetal syndrome diagnosis and surgery have passed, you'll have some time to think about your baby's arrival and to focus on self-care. You have either just undergone minimally invasive or open fetal surgery to help your unborn baby's chances of survival, but there are still risks involved to the both of you. Right now, there is nothing more important than resting and taking it easy. Here are a few tips on caring for yourself during this time.

travel

If you're like most patient families dealing with a fetal syndrome, you likely traveled out of state to a fetal center for treatment and care. After a few days of monitoring, including ultrasounds to monitor your baby's condition and watching for signs of preterm labor, you'll be released and depending on the severity of your diagnosis and treatment, will either be instructed to stay nearby until follow-up consultation and release or delivery, or sent home for prenatal care under your normal doctor. Outside of this necessary movement, and unless instructed otherwise by your doctor, your travel should be restricted until delivery.

bedrest 22

connexions

After surgery, many patients are sent home with strict instructions to remain in bed (or on the couch), resting on your side. This position has proven optimal for best blood

flow to your baby and uterus, and helps decrease any possible uterine contractions. Since preterm labor is known to be the most common complication of fetal surgery, your body and baby will only benefit from the rest. Be sure to ask how restricted you are and for how long. Depending on how well you and your baby are doing, this may be altered on a visit by visit basis. Some patients have shower and outings privileges, while others are only allowed to get up for bathroom breaks. If you find yourself in this more restricted scenario, invest in body wipes for keeping with good hygiene, binge watch your favorite shows, stock up on a good book and some snacks, and schedule family and friends to visit so you don't get too lonely.

consulting your doctor

If you stay nearby your fetal center, you'll be closely monitored each week until you're released to travel home or until delivery. If you're released home, you'll still be

"

since preterm labor is known to be the most common complication of fetal surgery, your body and baby will only benefit from the rest.

"

seen weekly for ultrasounds to check the vitals of your baby and to ensure the success of the treatment. At the first few postsurgery check-ups, it's important that you discuss any discomfort you may have from the surgery, and especially if your wound does not seem to be healing correctly.

It could be a sign of infection that can easily be managed if and when caught early enough.

fueling your body

While there is no specific diet to which you are restricted after surgery, it is important to understand that you should be eating as nutritiously as possible.

Hopefully, by now your nausea and morning sickness have faded and you are able to stomach actual meals, or at least snacks throughout the day. Stick with foods high in protein, including dairy products like Greek yogurt that are also high in needed calcium. Chicken, turkey and eggs are also excellent sources of protein and nutrients like choline, iron and B vitamins, among others needed throughout pregnancy.

Dense foods like berries, watermelon and cucumbers are great for helping with nutrients and hydration, as they are higher in water content.

And speaking of hydration, don't forget the importance of water.

Drinking lots of fluids will help prevent preterm labor and will help improve your baby's overall health and fluid levels, too. If you're getting headaches, feeling more anxious than normal, tired, routinely in a bad mood, or are experiencing reduced memory,

it could be signs of dehydration.

Mention the symptoms to your doctor and keep drinking water in the meantime.

planning for delivery

Depending on when you had surgery during your pregnancy, delivery could be weeks or even months away. After some time on bedrest, it will be time to begin planning for your new little one to arrive. You should discuss any concerns or questions you have with members of your care team, as you've anxiously awaited this day for a long while. Typically, patient families who have received a fetal syndrome diagnosis and undergone surgery to correct it find themselves in delivery rooms with a crowd. Aside from your perinatologist and neonatologist, labor and delivery nurses and anesthesiologist, members may also include cardiac and respiratory therapists to best assist in the delivery and immediate care of your baby and their unique situation.

Most fetal centers require that if you had open fetal surgery, your pregnancy will be delivered by planned cesarean or C-section.

This is mainly to prevent reopening of the uterine wound made during prenatal surgery.

However, if you had a minimally invasive procedure, you may want to discuss with your doctor, as you may be able to deliver vaginally.

Regardless of your restrictions after fetal therapy, remember that your pregnancy and the life of your unborn child rests on making good choices. Take care of yourself and let the doctors handle the rest.

Talitha has been a part of crafting much of the creative side of the Fetal Health Foundation for more than 12 years. Married for 17 years and mom to four, with her identical twins being TTTS survivors, she has experienced the spectrum on pregnancy and childbirth. She loves being a resource for other families on their journey with a fetal syndrome.

connexions

23

special feature

T

The fetal magnetocardiography (fMCG) device looks, in the words of one dad, “like R2-D2 hanging from the ceiling.” But when gently pressed against a pregnant woman’s belly, this groundbreaking tool can do something more amazing than any movie robot: it records the natural magnetic signals that come from the fetal heart rhythm, improving diagnosis and guiding treatment for heart arrhythmias before a baby is even born.

The safe, non-invasive procedure could also prevent stillbirths. It’s estimated that roughly 10 percent of unexplained stillbirths may be due to cardiac causes. Between 3 to 10 percent of stillbirths involve inherited conditions that affect the rhythm of the heart.

“And those conditions can’t be diagnosed by ultrasound,” notes Janette Strasburger, MD, a fetal electrophysiologist and researcher with the Herma Heart Institute at Children’s Wisconsin. “For 40 years, ultrasound has been the mainstay of all of our diagnoses, and it’s absolutely great for structural defects, but not as good for diagnosing arrhythmias. Until fMCG came along, fetal ultrasound was like a puzzle with many missing pieces.”

preventing stillbirths through better fetal heart monitoring special editorial submitted by children's wisconsin 24

connexions

That’s why Strasburger and Ronald Wakai, PhD, a professor of medical physics at the University of Wisconsin-Madison, have spent years developing fMCG for clinical use. Over the past two decades, they have used fMCG to study more than 900 fetuses, refining how to assess cardiac rhythm patterns in utero.

“The premise behind our work is that if we know what a baby has, we usually know how to treat it,” Strasburger says.

The FDA-approved device, known as a Superconducting Quantum Interference Device (SQUID), is available at only a few places in the nation, and Wisconsin is currently the only place using it to assess fetal cardiac conditions.

Strasburger is the principal investigator on a four-year, $2.4 million grant from the National Institutes of Health to assess the role of “hidden” fetal arrhythmias in stillbirths, and women with high-risk pregnancies from across the nation travel to Wisconsin to participate in the study.

The procedure involves four 10-minute recording sessions, with the entire visit taking two to three hours. Families get immediate results that guide their baby’s treatment plan, and researchers get data that gives them new insights into preventing stillbirths.

“We’re finding some fantastic results,” Strasburger says. “The horizon for women at risk of stillbirth is very bright.”

While some abnormal heart rhythms are life-threatening, others

In the meantime, Strasburger’s study is open to women 18 years and older who are between 20-27 weeks pregnant and who have a prior history of stillbirth or a diagnosis of twintwin transfusion syndrome or monochorionic twins, a fetal heart defect, a fetal abdominal wall defect or fetal hydrops.

are benign and easily treated, if needed. With the additional information from fMCG, women can avoid early delivery or unnecessary medications.

Sometimes supplements to increase a mother’s Vitamin D, magnesium or calcium levels can fix a baby’s abnormal heart rhythm and even reverse heart block, a serious condition that disrupts the heart’s electrical signals.

“Sometimes the most simple things are very effective,” Strasburger says. “We may see instant results, where the baby’s heart rhythm is back to normal the day after treatment is started.”

Ideally, fMCG would become the standard of care, used alongside the 20-week ultrasound, Strasburger says.

In the meantime, Strasburger’s study is open to women 18 years and older who are between 20-27 weeks pregnant and who have a prior history of stillbirth or a diagnosis of twin-twin transfusion syndrome or monochorionic twins, a fetal heart defect, a fetal abdominal wall defect or fetal hydrops.

While insurance doesn’t yet cover fMCG, there is no fee to participate in the study. Costs of the test, along with travel expenses for the mother and a companion are covered by grant funds. Participants also receive a small stipend.

Dr. Strasburger reading an fMCG recording.

To learn more about participating in the study, contact Clinical Research Nurse Coordinator Gretchen Eckstein, RN, BSN, at geckstein@chw. org or 414-266-3539. For more information on Children’s Wisconsin’s fetal heart program, visit childrenswi.org/fetalheart.

connexions

25

I

It is an office visit that I will never forget. The ultrasound tech looked intently, way too long in the same spot. At the end, she said the doctor needed to come in and take a look.

I immediately knew something was wrong. They both assured me that it may have been the baby’s position that was blocking a view of a part of the formed heart and that we would need to proceed at a high-risk clinic for a follow up. Deep inside I knew that it was more than positioning; a mother’s instinct is always on point.

After a few long weeks, I went to see the high-risk OB/GYN and they confirmed my baby had a congenital heart defect, specifically tetralogy of fallot. They presented all the possible things that could be wrong and offered all the tests. Do you want to know if the baby has other deficits?

I decided to get an amniocentesis that day. I just had to know what to prepare for. After another long three weeks, we received the call with the results, and they were 90% sure that our baby only had the congenital heart defect without any other deficits.

That felt like a dream come true.

finn's story: living with the heart of a warrior by dana degan

26

connexions

The rest of my pregnancy felt robotic, with in-depth scans confirming the heart defect every time, though otherwise healthy. We kept the gender of the baby a surprise, but we learned all we could about his specific condition, connected with other “heart warrior” families, and involved ourselves with the organization Baby Luck, a small specialized group of a larger organization called Camp Luck at Levine’s Children’s Hospital. We met other families going through the same struggles, but one thing we came to understand --- never compare your journey to someone else’s. It is never the same.

I had a c-section with my first-born daughter and the doctors were on board to have a c-section with #2, as well. The cardiac team was in the room, ready and waiting to grab a blue baby if needed. When the doctor raised the baby up for us to

see, I couldn’t believe my eyes; I had a son! We named him Finley, and he wasn’t blue! I was able to have skin-to-skin with him, took pictures and my husband, Mark, was able to cut the umbilical cord.

Those first few minutes were such a blessing.

He was whisked away and we met again in the NICU. Finn was a “star patient” per the nurses. Only one medication was required (which is why we had to stay in the NICU until surgery), and occasional oxygen in his nose. He was a pretty quiet baby, only crying when hungry or he had to pass gas.

As the week progressed and we neared the surgery time, his oxygen saturation and other monitored numbers began to decline. It was so hard to leave him at night, but we were assured that he was well taken care of and we needed our rest to stay healthy for him. This was some amazing advice.

At one week old, Finn underwent open heart surgery with a heart the size of a walnut. We thank God every day for skillful surgeons that can operate and mend a heart that size. We sent Finn off around 7:30am, walking to the operating room with him, holding his hand, and had to stop at the doors.

Three hours later, we got word that surgery was successful. Finn was sent to the Cardiovascular ICU on a respirator, with at least a dozen wires and tubes attached to multiple pumps, but he had 1:1 nursing care. At just one week old, he looked so tiny in the huge hospital bed. We listened in to rounds each day that we could so that we knew what was going on.

We were able to ask questions and

be involved with his care, which was reassuring. As Finn progressed to decreased medications through those four days, we experienced a bit of a road bump. One of his lungs collapsed, requiring CPAP therapy. He was full of fluids, swollen and had a huge mask on his face forcing air into his lungs.

He was able to overcome that within one day and we moved on to the last leg of our hospital stay, in the Progressive Unit.

With the 1:1 attention no longer there, it prepared Mark and I for home life with this little warrior.

We learned how to clean his surgery wound, breastfeed, change his diaper, and how to get him to sleep. After two full weeks, we were finally ready to head home, but were we ready for this?

It seemed like we were always headed to doctors during the first few weeks, but Finn was growing and his heart sounded great (though his heart will never sound like a ‘normal’ heart). As Finn has grown, we definitely forget that he has had heart surgery, but a visit to the cardiologist every three and now six months for a checkup and

often an echocardiogram and an EKG, we are quickly reminded that our little guy still has a special road ahead of him.

Since that release from the hospital with that little 2-weekold baby, we have only had one major event, requiring a surgery to place a stent. For now, he is a busy, rough and tumble little guy without restrictions and without medicines, living his best life, and we are so grateful for that. We know that at some point, he will require a placement of a pulmonary artery. When?

No idea! We continue with his regular monitoring and when the time is near, we will plan for it. For now, he is rocking that open-heart surgery scar like a badge of honor and we couldn’t be any prouder of the lives he has impacted thus far.

To read more of Finn's journey, go to theunchartedvoyageofbabydegan. blogspot.com/.

3-year-old Finn with sister, Olivia, mom Dana and dad Mark

Dana is a mom to two children and has been married to husband, Mark for nine years. She grew up on a dairy farm in Wisconsin and because of that lifestyle, has a passion for healthy living.

She went on to get her degree in human nutrition and works as a registered dietitian and shares healthy living tips on social media. She is self-employed as a health influencer and also owns Green Jeans Consignment, a seasonal women’s event in the Charlotte, North Carolina area.

connexions

27

photo courtesy of Christopher Harris on Unsplash

bills and a carefully planned savings, we knew we’d be okay for a while.

making a house a home by katie hagler

W

When we moved into our home, the first few weeks were exciting, new, and a roller coaster of emotions I didn’t exactly see coming. The buildup of anticipation had been brewing for this moment for over two and a half years. To understand our story, you would need to back track to the beginning of exactly two years and nine months earlier when life had turned upside down for our family. My husband unexpectedly parted ways with his employer he had been with for almost nine years. Everything we had known, every challenge he had overcome to make it from fry cook to the General Manager of a five-million-dollar Chickfil-A storefront, all went up in theoretical smoke one afternoon.

28

connexions

We were left empty handed with pain, confusion, and so many questions. We had already been living with my parents because our rental mill home had been put up for sale by the owner.

Our search for a home came to an abrupt stop once we found ourselves with no foreseeable income. It was reassuring financially to be with my parents, but at the same time, incredibly disruptive to what our normal used to be. I was a recently decided stay-at-home mom to our toddler aged son, after teaching for several years in a second grade classroom. We both felt in our hearts that I did not need to rush back to work.

We knew the unforeseeable future would be tough, but with minimal

The next year was full of emotional, mental, and spiritual growth.

Our marriage was stretched, as my husband searched for the right career. There were a lot of disappointments, commutes that were too far and didn’t add up for the compensation. There were great interviews with companies that didn’t have the full package to offer for a growing family that relied on one income. It takes a huge toll on your psyche to see your husband struggle to start new again. The unknown is scary and it’s so important to talk to people for support and encouragement to help you navigate uncharted waters. During this time period, we welcomed a baby girl, our second born. She brought us joy and hope, restoring a part of our soul after having experienced a miscarriage earlier in the year. Like new babies often do, her arrival brought sleepless nights, more financial responsibility, and a little less room in my parent’s ranch.

A few months after her birth, my husband began volunteering with the local football team; it was a career he had always been interested in, but had never had the opportunity to put his foot in the door. With his bachelor’s degree in business and the nine years’ experience he had worked in running a business, he was an ideal candidate for teaching. He was soon offered a job to teach high school CTE classes and have a permanent assistant football coach position. As he settled into his new role, we immediately began having conversations about buying a house. We had one specific house in mind. A 1940’s built, completely gutted house that sat on the street my husband grew up on, just five minutes away from the school he now taught at. This house was

built by his great grandparents and had been lived in by many family members over the years.

It was the perfect size for us and had so much potential. Our buying and closing process was complicated and lasted many months longer than the normal process. After nearly four months and 6 pushed back closing dates, we finally closed on our home on June 10, 2019. It’s no coincidence that we closed on that day; it was June 10, 2017 that my husband left the parking lot of his previous job for the last time. I believe God was rewriting the significance of that date for our family. It was no longer a date that brought back hard memories, it was a date that marked the beginning of a new life in a home that would bring our family redemption.

Renovation was supposed to take 3 months; but like most construction, it took double the time. My friends were always encouraging and praising me for

Thanksgiving. Life runs on its own time. I’m still learning to focus on the journey, not just the end goal.

We grow in the moments and transitions of our lives.

We finally moved into our home in December, just in time for Christmas. It took a while for our four-year-old to stop asking when we were going back “home.” It took time to realize my mother wasn’t going to be helping me grocery shop, meal plan, and cook for the family. She was such an integral part to our days before we moved. She was another person to shower hugs and kisses on my children. She could hold and comfort a crying baby while I cooked or cleaned or attended to my preschooler. She was my teammate when my husband was working long days. Living together as a family unit was a blessing and unfortunately, it often takes removing yourself from the situation to realize how much you are affected by the village that supports you.

we get to do it with and who we put our faith in. My pastor once said, “God isn’t just building the pieces of my picture, he’s building His purpose.” Without our story, we wouldn’t be the people we are today. It takes challenges to instill empathy, humbleness, and true gratefulness.

Learn the art of growing where you are planted. The little people you’ve been entrusted with will grow up right under your nose if you aren’t paying attention.

Making a house a home is not about what earthly treasures you can fill it with; it’s about the tangible love you can feel in the walls, the laughter and the tears that make life real, and the people who live within it.

it marked the beginning of a new life in a home that would bring our family redemption how patient I seemed; our friends don’t see the pity party we have for ourselves behind closed doors.

After so much unknown in our life, we were finally on a new path, with so much to look forward to; but each month that passed during that renovation period was like a bad dream when you are trying to run but your legs have become jello. We watched dates pass by like the start of football/school season, our son’s fourth birthday in October, and

Transition isn’t always easy. With each new day comes a little bit more confidence and a feeling of where “home” really is. It has taken me all this time to finally realize that “home” is my family. It’s wherever my people are. We were so grateful to be ending the year in our new little house and starting the new year with a deep appreciation of how the seasons of our life have been woven. There are still valleys to navigate and hilltops to rejoice on, but what’s important is who

Katie Hagler is a wife + stay at home mom of two. She is a former elementary educator who loves all things coffee, chocolate, and Pinterest.

connexions

29

special feature

DIAGNOSING Eli’s Fetal Cardiac Mass

The 20-week ultrasound was supposed to be exciting.

Leetal Birger and her husband, Josh Rubinstein, couldn’t wait to see their baby’s hands and feet, a first glimpse of his little face.

“They do the organs last,” she recalls.

“And when they got to the heart, there was this silence in the room. Finally, the ultrasound tech was like, ‘I’m going to have to call the doctor.’”

Leetal’s baby, Eli, had a mass on his heart, a tumor. It was big, nearly 40% of the heart’s mass. The good news was that wasn’t blocking anything, and they didn’t think it was cancer The size of it put Eli at risk for arrhythmias, which could shorten Leetal’s pregnancy and potentially cause fetal heart failure or even death. That was the bad news.

Editorial submitted by friend steward partners at the Colorado Fetal Care Center

“When it comes to your child’s life, you want the best of the best.”

– L E E TA L , E L I ’ S M O M

Children’s Hospital Colorado complies with applicable Federal civil rights laws and does not discriminate on the basis of race, color, national origin, age, disability, or sex. • ATENCIÓN: si habla español, tiene a su disposición servicios gratuitos de asistencia lingüística. Llame al 1-720-777-1234. • CHÚ Ý: Nếu bạn nói Tiếng Việt, có các dịch vụ hỗ trợ ngôn ngữ miễn phí dành cho bạn. Gọi số 1-720-777-1234. CFCC-180144A-2020-02

30

connexions

A first diagnosis: rhabdomyoma “We were obviously in the worst shape,” Leetal says. “Just devastated. We didn’t know what to do. You know? Do we continue the pregnancy? Does this child deserve that kind of life?

So many questions.”

Leetal thought a family friend at UCHealth, next door to Children’s Hospital Colorado on the Anschutz Medical Campus, might have some answers. Her friend did.

“She said, ‘There’s no doubt in my mind, you need to be at Children’s Colorado,” says Leetal. “When it comes to your child’s life, you want the best of the best.’”

How fetal magnetocardiogram put a family at ease “I received the call Sunday afternoon and saw the family that Monday morning,” remembers Bettina Cuneo, MD, Director of the Fetal Cardiology Program at Children’s Colorado’s Colorado Fetal Care Center. “Right away, I knew I wanted a more complete picture of the electrical activity in Eli’s heart.”

The best way to get that information would generally be an electrocardiogram, or ECG, however an ECG doesn’t work in fetuses. Dr. Cuneo sent for a test called a fetal magnetocardiogram, or f/MCG, a research tool, which converts magnetic fields from the heart into electrical signals exactly like those of ECG. “The f/MCG was completely normal,” says Dr. Cuneo. “Which is very unusual for this type of tumor.”

The only one recovering Eli’s stability in the womb allowed for the routine, vaginal birth Leetal wanted. Where possible, that’s standard at the Colorado Fetal Care Center, where Eli could be evaluated and treated right away.

But in the end, the biggest trial of the birth experience was one far more common than a heart tumor: Eli was breech. He was born via C-section on a Tuesday. That Friday, equipped with the kind of handheld doppler heart monitor you can buy off a shelf, they went home, surgery indefinitely postponed.

And nearly a year later, Eli’s heart hasn’t missed a beat.

His care team is still monitoring the tumor, which is growing smaller and smaller. Whatever happens, it’s an experience Leetal will never forget. “I did everything in my power to get him to flip.” She chuckles. “Massage therapy, acupuncture. I didn’t want to be recovering from surgery and at the same time trying to deal with my baby recovering from surgery. But it turned out I was the only one recovering. Eli’s doing great.”

For more information about the Colorado Fetal Care Center, please visit childrenscolorado.org/Fetal-Care.

connexions

31

care 101:

preparing for a baby with a complex fetal diagnosis

by heather strief

F

Finding out that you are expecting is usually a time of celebration and anticipation. When you learn that your baby has a complex fetal diagnosis, that experience changes quickly. You may be feeling scared, angry or frustrated. You will naturally have a lot of questions and will need to prepare differently than how you originally expected.

As a social worker who works with the Cincinnati Fetal Center, here are a few things I recommend parents do to begin mentally and logistically preparing for a baby with a complex fetal diagnosis.

1. Understanding your coping style

Understanding how you cope with difficult situations will help you recognize how to move through your pregnancy. Do you prefer to keep information private? Do you need the support of your closest family and friends? Your partner may cope differently, and that’s totally normal and something you both should recognize.

2. Educating yourself

You likely have a lot of questions. Getting answers can help you feel more in control of the situation, help you plan for the future, and help you make decisions. While there is an abundance of information out there and there are likely several patient family stories to which you can relate, but

32

connexions

it is important to remember that your baby’s situation is unique.

You may be able to find general information on the internet, but the most helpful and accurate information will come from your medical team.

3. Sharing your pregnancy

I recommend thinking about how much information you want to share and with whom you want to share it. It’s important to make sure that you and your partner are in agreement about this. Do you want to share everything face-toface? Designate a spokesperson who can dole out the agreed upon information? Some families utilize Facebook or private online platforms such as CaringBridge, either of which serve the purpose of keeping those you want updated on your pregnancy.

4. Preparing responses

Just as you had and continue to have questions, you are likely to get asked many of the same as you embark upon this journey. Families have found it helpful to prepare some general responses ahead of time. For those who will be more supportive and understanding, you may want to be more open with your responses. However, with others, you may want to have a more generic response prepared to acknowledge their questions and concerns, but prevent further questions. Some examples include: “The future is unknown right now, but please keep us in your thoughts and prayers.”

"There is much we don’t know, but

we are hoping for the best.”

"My baby isn’t healthy, but we are working with our doctors and hoping for the best.”

5. Building a support system

Having a support system of helpful family members, enthusiastic friends and supportive co-workers can make your pregnancy run a lot more smoothly. While couples lean on each other during this time, it is just as important for each of you to have people outside of your immediate family with whom to talk and reach out for help. They may be able to help you with logistical needs, such as transportation for appointments and even childcare, as well as things like managing communications.

6. Explaining how to help

Once you have the right people in place, you’ll have to give them a little guidance on how to best support you. It may be emotional support, such as a shoulder to cry on, or needing their help keeping a positive outlook. Families have used support from neighbors to help with childcare, ride shares or even meal assistance. Churches have taken up collections to help with medical or relocation expenses. Family members and co-workers have been helpful with dispersing information to others.

7. Finding the good

Even though you are coping with unforeseen challenges, or potentially facing a heartbreaking loss, it may be helpful to remember that the life inside of you is already

a part of your family. Find ways to honor him or her by making memories. Start using his or her name and encourage others to do so, as well. Take advantage of perinatal hospice programs like StarShine or Footprints to assist you with birth planning and memory making throughout your pregnancy.

8. Setting up resources

I recommend taking advantage of all of the support services your fetal center has to offer.

That may include social work, chaplains, hospice, child life specialists, nurses, and more that you may have never realized was available to you. Your social care coordinator will be able to help you navigate your insurance, financial resources, and lodging, transportation and relocation logistics for when treatment is necessary.

The most important thing to realize through this whole process is that you are not alone.

Trust your medical and support teams to help get you through.

online resources Several sites helpful during a complicated pregnancy:

*benotafraid.net *healingfromthestart.com *alightershadeofblue.com *fetalhealthfoundation.org

Heather Strief is an independently licensed social worker with Cincinnati Fetal Center. Her role is to support families with access to support and services, including assisting families with transportation, lodging, insurance questions and community resources, as well as supporting families emotionally by providing support during clinic visits, referrals for mental health services, and grief and bereavement resources. Heather participates in several committees, focusing on assessing the changing needs of Fetal Care families and making improvements to their understanding of their baby’s diagnosis and their experiences within the Cincinnati Fetal Center.

connexions

33

Continuing Education Course

REMEMBRANCE PHOTOGRAPHY AS A BEST PRACTICE IN PERINATAL LOSS POPULATIONS

For more information on how medical providers can partner with Now I Lay Me Down to Sleep and to request more information, please visit our website at nowilaymedowntosleep.org/continuingeducation This continuing nursing education activity was approved by Colorado Nurses Association, an accredited approver by the American Nurses Credentialing Center’s Commission on Accreditation.

34

connexions

Johns Hopkins Center for Fetal Therapy TREATING DISEASE BEFORE BIRTH Our experts at the Johns Hopkins Center for Fetal Therapy have led in clinical and safety outcomes regarding advanced prenatal surgical techniques for fetal anomalies. We pride ourselves on always prioritizing combined maternal, fetal and infant safety.

KEY FACTS SPINA BIFIDA

Offering fetoscopic spina bifida repair with improved obstetric outcomes compared to open repair.

TWIN TO TWIN TRANSFUSION

93% survival in high-risk twin to twin transfusion syndrome patients using the Solomon laser technique.1

CONGENITAL DIAPHRAGMATIC HERNIA

High chance of term birth with 93% neonatal survival following fetoscopic endotracheal occlusion (FETO) for severe congenital diaphragmatic hernia.2

RENAL ANHYDRAMNIOS

Spearheading the role of fetal therapy for lethal pulmonary hypoplasia in the Renal Anhydramnios Fetal Therapy (RAFT) Trial.

Learn more about our recent research outcomes by visiting the health care professional section of our website.

A physician referral is a handshake, not a hand off. If you are caring for a patient facing a complex fetal diagnosis, call 844-JH-FETAL (844-543-3825) and speak directly with a physician to learn how we can partner to deliver comprehensive care.

hopkinsmedicine.org/fetal-therapy 1

https://doi.org/10.1016/j.ajog.2018.11.243

2

https://www.ncbi.nlm.nih.gov/pubmed/32028493

special feature

from diagnosis to delivery: early prenatal intervention improves outcomes www.fetalcarecenter.org Call us at 1.888.FETAL59 to learn more or request an appointment.

A

At the Cincinnati Fetal Center, our innovative treatment options bring real hope to families. Led by physicians from Cincinnati Children’s, TriHealth and University of Cincinnati Medical Center; we are dedicated to exploring the unique challenges that face each patient and unborn baby from diagnosis to delivery.

One of a few comprehensive fetal care centers in the world, we are specially equipped to care for fetal abnormalities like spina bifida, a birth defect that occurs when the bones in a baby’s spine do not fully form during early pregnancy.

special editorial submitted by friends steward partner cincinnati fetal center 36 connexions

Spina bifida can range from mild to severe. A child born with the most severe form of spina bifida, myelomeningocele (MMC), can experience serious health problems, such as hydrocephalus (an excessive accumulation of fluid in the

brain) and paralysis. The severity of paralysis depends on where the opening occurs in the spine.

At the Cincinnati Fetal Center, we offer options for early in-utero intervention that may improve the overall outcome.

experience performing open and fetoscopic operations.

Prenatal surgery for MMC takes place between the 19th and 25th weeks of pregnancy. Unlike in the open surgery where the doctor makes an incision across the mother’s abdomen and The Right Decision for Your opens the uterus, the fetoscopic Situation procedure is much less invasive.

When a family comes to us, The neurosurgeon removes they can meet with a full range the myelomeningocele sac and of multidisciplinary specialists releases the spinal cord, and the within a few days of their initial fetal surgical team repairs the call to the center. Our team spinal defect in layers before includes maternal-fetal medicine specialists, fetal surgeons, pediatric closing the skin to protect the spinal cord from exposure to neurosurgeons, neonatologists, genetic counselors, developmental amniotic fluid. pediatricians and social workers.

“With the fetoscopic procedure, Your referring obstetrician and/or we’re able to achieve the same maternal-fetal medicine specialist positive neonatal outcomes as are welcome to participate with open surgery. The baby in team meetings via video teleconferencing.

“When families talk to a full range of specialists, they can make the most informed decision about the right procedure for the optimal outcome in their specific situation,” says Dr. Jose Peiro, Endoscopic Fetal Surgery Director.

Our team works with each family to determine if fetal surgery is a possible solution. Fetal surgery for MMC can offer significant benefits to the baby, but it also carries serious risks and potential complications. Our team provides extensive testing and counseling to ensure that patients meet the criteria and have all the information they need to make an informed decision about whether to undergo the procedure.

Early Interventions, Optimal Outcomes At the Cincinnati Fetal Center, we can do prenatal repairs for MMC while the baby is in utero.

Our surgeons have considerable

"

we’re pioneers of this approach --- and one of a few in the world that can do it

"

does better postnatally if we avoid prematurity and it’s much less risk with fewer complications for mom,” says Dr. Jose Peiro.

Women who undergo the fetoscopic procedure have the option to deliver current and future pregnancies vaginally, whereas women who have the open fetal surgery must undergo a Cesarean section to prevent any stretching or tearing of the scar that was left on the uterus.

When patients do not undergo prenatal surgery, surgical repair takes place after the baby is born. In this situation, we operate on the baby a few days after birth to close the opening in the spine to prevent infection and prevent further injury to the spinal cord and nerves.

However, it cannot correct the established damage in the spinal cord and nerves. Babies who are born with hydrocephalus may need a shunt to help drain the excess fluid from the brain.

Shunt placement surgery may take place within the first few weeks after the baby’s birth.

Dr. Jose Peiro, Endoscopic Fetal Surgery Director for the Cincinnati Fetal Center

connexions

37

cincinnati fetal center: mmc by the numbers

number 347 Total of evaluations MMC 93 Prenatal repairs 40 Fetoscopic Prenatal MMC Repairs (2016+)

41% Fetoscopic Prenatal MMC Repairs Delivering Vaginally (2016+)

Care Continues After the prenatal procedure, mothers have the option to deliver at Cincinnati Children’s.

Our Special Delivery Unit is located inside one of the best pediatric hospitals in the world on the same floor as our topranked NICU.

Looking Forward The Cincinnati Fetal Center has more than 40 years of experience with spina bifida and have been performing prenatal surgery for nearly a decade. All that experience means they can focus on finding novel therapies to enhance surgical outcomes and enhance quality of life for patients.

“We’re pioneers of this approach --- and one of a few in the world that can do it,” says Dr. Peiro.

Innovation is a hallmark of the fetal center's approach to care.

The center is one of only a few in the United States to offer the unique combination of groundbreaking research and best-in-the-world clinical work for patient families.

“I have a lab here where the main focus is spina bifida. I’m always working to improve techniques and work with others to lead innovations in spina bifida,” says Dr. Peiro.

“Looking ahead, I’d like to intervene even earlier in gestation, to improve the materials we use, and to work with regenerative stem cell therapy and more pharmaceutical treatments.”

Not all fetal conditions require delivery in a Special Delivery Unit. Your medical team at the “When babies are delivered at Cincinnati Fetal Center will work Cincinnati Fetal Center, they can with you to create the best birth avoid transportation of the baby plan and delivery location for after delivery,” says Dr. Peiro. both you and your baby.

"

With newly expanded 24/7 triage for all delivery types, the Special Delivery Unit allows healthy moms whose babies face complex conditions like spina bifida to recover right down the hall from their baby. This offers peace of mind that they need says Dr. Peiro. during this time.

when Mom recovers next to baby, it increases the quality of the entire process

38

connexions

"

cincinnati fetal center When you need advanced care for your baby, we’re here for you.

Before, during, and after delivery.

The Special Delivery Unit at the Cincinnati Fetal Center provides one of the world’s only birthing units located inside a pediatric hospital—so you can recover down the hall from your baby.

From the moment your baby is born, they are surrounded by the expertise, excellence, and exceptional care that only Cincinnati Children’s NICU and CICU can offer. With newly expanded 24/7 triage for all delivery types, the Special Delivery Unit at Cincinnati Children’s is for healthy expecting moms whose babies face complex conditions such as: *Congenital diaphragmatic hernia (CDH) *Fetal heart conditions *Spina bifida (myelomeningocele or MMC) Regardless of condition, the medical team at the Cincinnati Fetal Center works with each patient family to ensure the best plan and delivery location for both mom and baby.

1.888.FETAL59

info@fetalcarecenter.org www.fetalcarecenter.org

we are so excited to be growing a new collaboration between the Fetal Health Foundation and the Fetal Therapy Think Tank, a diverse consortium of fetal medicine stakeholders working to advance the development of fetal diagnosis and treatment.

We’re stronger together We want to offer hope, and ever more innovative therapeutic options to patient families on their fetal syndrome journey.

To learn more about this collaboration, visit http://fetaltherapythinktank.org/.

FETAL THERAPY THINK TANK

stress + your baby: impacts of maternal stress on fetal health

by Paula Joyce

40

connexions

S

Stress is an all-too-common occurrence. In a report entitled ‘The United States of Stress’, Everyday Health’s Nan-Kristen Forte reveals that one-third of Americans have gone to their doctors for a stress-related problem, which often affects their work, social lives, and inner peace.

But for pregnant women, new research reveals that high levels of maternal stress pose even more worrisome problems, as it can have adverse effects even on their unborn baby.

Maternal Stress + Fetal Health The study, which was conducted by researchers at the Children’s National Hospital, found that maternal stress and anxiety, especially in the second trimester of pregnancy, have a profound effect on fetal brain development.

Particularly, it results in the reduction of cerebellar and hippocampal volume, two crucial elements of the brain. The former is important in motor coordination, as well as social and behavioral development. The latter, meanwhile, is closely tied to memory and learning, and is by default, easily affected by stress.

This adds to existing literature on problems with fetal brain development caused by maternal stress. Another recent study, this time conducted by King’s College London, found that other areas of a fetus’s brain are also compromised by maternal stress. Lead researcher Alexandra Lautarescu explains that women who experienced more stress during pregnancy were likely to have babies whose uncinate fasciculus was not well-developed.

Though this white matter tract’s function is not well-known, it is believed to ultimately play a role in learning and memory.

These studies, of course, add to the laundry list of harmful effects caused by stress in general, which includes exhaustion, difficulties with memory, a weaker immune system, and high blood pressure, among others.

Given their findings, the Children’s National Hospital Researchers continue to advocate for routine mental health tests for pregnant women, so as to help moms and their babies avoid the toxic effects of maternal stress.

Alleviating Stress for Mom + Baby

With all of this in mind, it is important to remember that there are some key steps would-be mothers could take to help alleviate stress for better maternal and fetal health.

Parsley Health CEO and mom

Exercise has also been found to be good for alleviating stress, though NCCPT Certified Personal Trainer Maureen Pray advises consulting with a health professional first before any exercise program to ensure that it is compatible with your prenatal needs. Be sure to avoid workouts where falling is likely, or those that require you to bounce while stretching, as balance will be skewed. Instead, stick to exercises where your feet can stay planted, such as using treadmills (or walking in fresh air) and ellipticals, or take advantage of the toning and mindfulness that can be done in both pilates and yoga classes.

Lastly, don’t be afraid to ask for help. Enlist your partner to carry out additional chores or errands to help lessen your physical and mental load, or use apps like Walmart Grocery or Target Circle to save time that you can use for meditative or relaxing practices instead. If you feel that you are

Simple methods like keeping a gratitude journal or being mindful of your breathing can do wonders for your mental and physical health.

Dr. Robin Berzin recommends practicing meditation, which is known to lower cortisol levels and reduce inflammation. Simple methods like keeping a gratitude journal or being mindful of your breathing at key points several times each day can do wonders for easing your mental and physical health.

under too much mental stress at any point during your pregnancy, reach out to a healthcare professional to find a solution that can work for you and your family.

All in all, remember that taking care of yourself during pregnancy is the best thing any mother can do for their unborn child’s development and health.

Paula Joyce is a stay-at-home mom with a background in psychology and maternal wellness. When she’s not running after her two daughters, Paula dabbles in writing and urban gardening.

connexions

41

special feature

E

Every six months, Remington MacCullough travels from Esparto, Calif. to the Spina Bifida Clinic at Shriners Hospitals — Northern California in Sacramento and gets his ultrasound.

He knows the drill. He knows the faces. They're the same faces that have followed and cared for him since he was an infant.

“We have been going here since he was six months old. He gets an ultrasound. They look at the health of his kidneys and his bladder and then he goes to meet with his doctors and talk about the results,” said Chloe MacCullough, mother of Remington.

It is the routine for many spina bifida patients in inland Northern California.

For more than 25 years, UC Davis Children’s Hospital has partnered with Shriners Hospitals for Children — Northern California to serve children with spina bifida. The Spina Bifida Clinic, located across the street from UC Davis Children’s Hospital, is a unique collaboration in its region, blending the expertise of UC Davis with Shriners, including physicians, registered dietitians, physical and occupational therapists, and ultrasound technicians in a child-friendly facility.

uc davis health shriners hospital partner to provide expertise to spina bifida patients special editorial submitted by friends steward partner uc davis 42 connexions

It’s a place of support and healing for children with spina bifida, and since 2016 when the UC Davis Fetal Care and Treatment Center opened, it has been a place for children who have been treated with spina bifida in the womb.

“I think our partnership offers children with the best of both worlds,” said Maya Evans, medical director of the Spina Bifida Clinic.

She splits her time working with children in physical medicine and rehabilitation (PM&R) at both facilities.

“Our physicians come from PM&R, pediatric orthopaedics, pediatric neurology and pediatric urology. This arc that we offer provides a nice continuity of care for children who started with fetal surgery at UC Davis and takes them through adulthood.”

Chloe MacCullough notes that the intimate setting at Shriners has been comforting and that the staff have been incredibly kind and patient. As for Remington’s doctors?

“We meet Dr. Maya Evans each time and talk

about Remi’s general wellbeing, his mobility, have we noticed anything new. She is very kind and we have a great rapport with her,” MacCullough said.

As for the services that MacCullough has used, in addition to the Spina Bifida Clinic, they visit the Pediatric Orthotic and Prosthetic Services (POPS) Clinic to get customized orthotics for free. The orthotics clinic provides state-of-the-art orthotics and prosthetic devices using computeraided design (CAD) technology and fabrication machines. They add child-friendly designs in bright colors and prints. Kids can pick out their print, as well as the color of the straps.

next step in their care and can provide comprehensive services for adults with spina bifida. It is what caregivers call lifespan care.

“The partnership between UC Davis and Shriners has given our family peace of mind when it comes to creating a plan for our son’s overall health. Knowing Remi has doctors who are working together to ensure he has the best care has made all the difference as we navigate his medical journey. The Spina Bifida Clinic at Shriners is a huge part of this, where we gain knowledge and equip Remi to live a full and successful life,” Chloe MacCullough said.

care at uc davis

Remington’s first set of orthotics had a dinosaur print. His latest set are camouflage. He loves them, said MacCullough.

And while Remington is still a few years away from starting school, Shriners also has a coordinator dedicated to help ensure that children receive needed accommodations when they start or return to school. Spina bifida patients are protected under Section 504 of the Rehabilitation Act of 1973.

“The 504 accommodations take into account their academic needs and physical needs,” said Margaret Kugler, coordinator of educational and vocational services at Shriners Hospitals for Children - Northern California.

“I often educate the school staff so they understand the patient’s challenges and can think as a team about how they are going to help this child meet the state standards. It’s just one example of how we help children bridge the transition back to school.”

Once children reach the age of 18, UC Davis Medical Center is the

"

Remington's orthotics; a happy Remington at 2 years old

Together, the Northern California Shriners Hospital and the UC Davis Children’s Hospital has ranked as one of the nation’s top providers of pediatric orthopaedic and pediatric urology care by U.S. News and World Report.

while Remington is still a few years away from starting school, Shriners also has a coordinator dedicated to help ensure that children receive needed accommodations when they start or return to school. Spina bifida patients are protected under Section 504 of the Rehabilitation Act of 1973. connexions

43

maximize your phone:

best apps for first-time parents

by kris louis

44

connexions

A

As a parent-to-be, you’ve probably heard a lot about how bad too much screen time can be for kids and why it’s important to set a good example when it comes to digital media.

However, while you shouldn’t mindlessly scroll during time that’s better spent engaging with your children, new parents also shouldn’t disregard their smartphones completely.

While we tend to use our phones as entertainment devices more often than not, smartphones are also full of information and tools for new parents. Whether you want to track your baby’s development in utero, log some of the less glamorous aspects of parenthood after birth, or just snap photos of your precious new addition, you can do it all with the help of your phone.

However, before turning your smartphone into your baby command center, make sure your phone plan is up to the task.

That means enough data to look up information and use apps on the go without worrying about overage charges. If you need to upgrade your data plan, but don’t want to buy a new phone, look into prepaid plans that let you bring your own device. You’ll also want to get a good phone case — you’ll become a pro at typing one-handed and will inevitably drop it.

need to make sure you’re doing everything possible to grow a healthy baby. Apps like the Ovia Pregnancy Tracker do just that, with features that let women track their weight, moods, sleep, physical activity, and other health metrics throughout pregnancy. Ovia also includes illustrations of your baby’s development so you can learn about what’s happening in your womb.

For a more focused fetal health app, check out BabyCenter’s My Pregnancy and Baby Today app.

With a daily calendar to track your baby’s development, tips for a healthy pregnancy, and a handy contraction timer, this app has everything you need to get through the next nine months.

Apps for Tracking Baby’s Health If you thought there was a lot to keep track of during pregnancy, just wait until after your baby is born.

From feeding schedules and how often they pee and poo, to first words, new parents have a lot on their mind. Paired with the all-tooreal new mom brain, it can be tough to remember and keep up with it all.

Once your phone is ready to go, consider arming it with these apps designed with a new parent’s needs in mind.

Enter the Glow Baby app, your trusty sidekick. With simple tools for tracking feedings, diaper changes, and sleep, Glow Baby makes it easy to log data and chart your baby’s growth. Glow also includes customized parenting tips and a community where parents can connect. Nursing moms will appreciate Milk Maid, a specialized pumping app that helps mothers monitor their milk production and manage their breastmilk stash across multiple locations.

Pregnancy/Development Apps Parenthood doesn’t start on the day your baby is born. As soon as you’re pregnant, you’ll

Apps for Capturing Memories Parenthood isn’t all work and no play, as there will also be lots of magical moments along the way.

Make sure you’re in the moment, yet ready to capture them. A companion to the famous book and milestone-tracking app, The Wonder Weeks Milestone Memories lets parents track their baby’s development in pictures and share them with friends and family. For a more general purpose photo app, try Lifecake.

For printing and treasuring these special photos and moments for years to come, consider Shutterfly’s app where you can upload photos and either order prints directly or create beautiful keepsake books that you’ll love looking at and sharing again and again.

Apps for Making Life Easier If you haven’t already discovered the ease of apps like Instacart and even Target Circle and Walmart Grocery, these apps will truly be your new best friend. You don’t have to worry about loading up baby to head to the store, dealing with everyone wanting to see and touch them while you’re shopping, and then loading and unloading everything once you get home. Simply add the items you need to your online cart, they do the shopping for you, and depending on the service, either load your groceries into your car at the store when you arrive or deliver them directly to your home. Talk about a time saver!

Need that hour for a nap (or Netflix show --- we won't judge!) while baby sleeps? You got it!

You use your phone for everything, from keeping in touch with loved ones to updating your grocery list. Why not use it for navigating parenthood? With helpful apps like these, the tools you need to be an amazing parent are always right inside your pocket.

Kristin Louis is a former advertising copywriter. She’s a loving mom to two boys: oldest is 10 and youngest is 7. She recently created parentingwithkris.com, where she puts her skills to work writing about the trials and tribulations of parenting.

connexions

45

special feature

L

Little Ennsley was born in Phoenix, AZ in July 2018 and was welcomed by her mom, dad and 9 other brothers and sisters.

Although Kiera, Ennsley’s mom, had gone through 9 other pregnancies, including 6 cesarean sections, her pregnancy and delivery with Ennsley was different.

During a routine prenatal visit, doctors in Phoenix alerted Kiera of an abnormality in Ennsley’s lungs. They couldn’t confirm if it was an underlying genetic condition, but they told Kiera and her husband an ultrasound indicated that Ennsley had fetal pleural effusion, a condition where there is abnormal accumulation of fluid in the chest. The condition is relatively rare (occurring in anywhere from 1/10,000 to 1/15,000 pregnancies), and sometimes even resolves on its own. Following careful imaging and with ongoing monitoring, the family navigated the diagnosis and Ennsley was born full term and soon discharged from the hospital.

phoenix family travels to denver's world leader in minimally invasive approach for cpam special editorial submitted by friends partner rocky mountain hospital for children 46

connexions

THE PATH TO TREATMENT At Ennsley’s two week check-up, Kiera was insistent that the pediatrician watch video she recorded on her phone of Ennsley’s breathing. Although not always present, Kiera had seen many instances where her daughter’s chest appeared to sink in with a series of breaths, indicating that her daughter was experiencing respiratory distress. Following the visit, they were sent to the ER. A chest-xray was performed and medical teams found that the plural effusion (seen in pregnancy) was cleared, but Ennsley had a mass inRoute around the same lung.

When Ennsley was 3 weeks old, doctors suggested that the mass be taken out when Ennsley turned 6 months, so she would have a bit more time to grow and strengthen before the invasive surgery.

Over the next few months, the doctors were also working to rule out other diagnoses. At 6 months, following an MRI and CT scan, the doctors noted that the mass looked like a solid tumor and began working to rule out neuroblastoma, a cancer that develops in embryo or

fetal nerve cells. Two other diagnoses the Phoenix physicians considered were that the mass was a Congenital Pulmonary Airway Malformation (CPAM), whereby a benign cystic mass grows in the chest, or Pulmonary Sequestration, a piece of lung tissue that develops in utero but does not attach to the pulmonary arterial supply and fails to support breathing.

Early tests showed that the mass was most likely not a neuroblastoma.

Ennsley’s Phoenix area medical teams biopsied the mass, during which Ennsley ended up with internal bleeding. This meant she needed time to heal before surgery to remove the mass.

When Ennsley was about 9 months old, she returned to the Phoenix area hospital and doctors did all they could to remove the mass.

However, 3 months later, a chest

x-ray revealed a significant portion of the mass was still present.

FINDING THE RIGHT TREATMENT Kiera turned to other moms who had children with a CPAM diagnosis. She flew out to Philadelphia with Ennsley when Ennsley was 8 months old. They met with experts in Philadelphia, but eventually learned about Dr. Steve Rothenberg, pediatric and fetal surgeon at Rocky Mountain Hospital for Children.

Dr. Rothenberg is a world leader in minimally invasive surgery for complex congenital conditions like Congenital Diaphragmatic Hernia (CDH), Esophageal Atresia (TEF) and Congenital Pulmonary Airway Malformation (CPAM) – the condition Ennsley had.

“The difference between Dr. Rothenberg and other doctors is the confidence I had that he knew what he was doing," said Kiera.

“Dr. Rothenberg really knows what he is doing. I knew he understood her diagnosis and with him, Ennsley was in the best hands.”

Ennsley and her parents flew from Phoenix to Denver in January and she had surgery the day of arrival.

Because Dr. Rothenberg performed the surgery using a minimally invasive approach, and even though the CPAM was complex in nature due to the previous removal attempt, Ennsley was released from the hospital day one post-op and flew home 4 days later.

Today, Ennsley is back home with her parents and siblings. The mass in her chest is gone, but her family is amazed that at only 18 months old, she has already been to four hospitals in three states.

Ennsley playing and with her family

Kiera adds, “The teams at Rocky Mountain Hospital for Children were definitely the friendliest of them all.”

a hospital like no other Although Ennsley came to Rocky Mountain Hospital for Children in Denver, CO after an initial diagnosis, in the last 5 years alone, more than 124,000 patients have been referred to our Center for Maternal Fetal Health for evaluation when there is concern that a pregnancy is high risk.

Our Center for Maternal Fetal Health teams understand that being diagnosed with a high-risk pregnancy can be emotionally and physically difficult. From the moment you meet our physicians and experience our personalized care coordination, you’ll know why patients travel from across the Rocky Mountain Region and beyond for care by our specialists.

Located in Denver, CO, RMHC is home to the only hospital in the Rocky Mountain region with both a Level IV NICU and a Level IV Maternal Program – so both high risk moms and babies can be cared for under one roof.

Whether you are looking for a Maternal Fetal expert or to learn more about Neonatal Minimally Invasive Surgery options, visit: CenterforMaternalFetal Health.com or call: 720-754RMHC (7642).

connexions

47

tiny but mighty:

a closer look at iugr

by erin zinkhan, md

photo courtesy of Nathan Dumlao on Unsplash

48

connexions

Even though intrauterine growth restriction (IUGR) is relatively common, most parents have never heard of it until their pregnancy is complicated by it. In IUGR, a baby does not grow as much as he or she was supposed to before birth. Currently, there is no weight cutoff to define whether a baby has growth restriction, which can make it difficult for doctors to diagnose, except in the more severe cases.

B

Because of the difficulty in diagnosing growth restriction, we do not know exactly how many babies are impacted by it. We estimate that growth restriction affects 3-14% of pregnancies in developed countries, or between 100,000 and 400,000 pregnancies per year in the United States.

Known Causes

There are many causes of growth restriction. Doctors think that most common causes of growth restriction are due to the same underlying issue, which is that the fetus does not get enough nutrition and oxygen in the womb. In developed countries, the most common cause of growth restriction is preeclampsia. Preeclampsia is a condition unique to pregnant women. A pregnant woman with preeclampsia often has high blood pressure, headaches, abdominal pain, and protein in her urine. Other common causes of growth restriction are the use of substances such as tobacco, abnormal development of the placenta, and chronic health conditions in the mother, such as high blood pressure, kidney disease, and lung disease. Twins

and other multiples have a unique risk for growth restriction. Sharing a womb can cause crowding, which can limit growth. When twins share a placenta, sometimes unequal blood flow can develop.

This unequal blood flow can lead to one fetus getting less nutrition than the other and one twin becoming growth restricted.

Less common causes of growth restriction are infections and genetic conditions. Infections such as cytomegalovirus and rubella can cause growth restriction.

Genetic conditions that cause growth restriction can be part of other syndromes. One syndrome that causes growth restriction is Edwards syndrome, which is also known as Trisomy 18. Uncommon problems with how the fetus develops can also cause growth restriction, such as when the fetus’s heart does not develop normally.

These less common causes of growth restriction generally do not limit the nutrition and oxygen that gets to the fetus, but rather directly limit the ability of the fetus to grow.

Growth restriction can affect the growth of the fetus’s whole body equally, or can affect the brain less than the rest of the body. When

the brain is less affected than the rest of the body, the baby’s head size is normal to slightly small, and the baby’s length and body weight are small. This pattern is called ‘brain-sparing’ or asymmetric growth restriction. Asymmetric growth restriction often results from many of the same common causes of growth restriction, such as preeclampsia and chronic maternal health conditions. When the baby’s whole body is equally affected, the head size, length, and weight of the baby are all smaller than expected. This is called symmetric growth restriction.

Symmetric growth restriction is more often caused by infections and genetic conditions.

Gauging Growth Restriction

Before birth, obstetricians diagnose growth restriction when ultrasound measurements show that the fetus’s growth is slowing down or stopping altogether.

Obstetricians measure the baby’s head circumference and length of the bones. They use these measurements to estimate how much the fetus weighs.

Obstetricians also measure the blood flow in the umbilical cord and in the fetus to see if the fetus is doing well despite being small. Two common tests that obstetricians use to see how the fetus is doing are the non-stress test and the biophysical profile.

Non-stress tests measure the fetus’s heart rate. A non-stress test result can be either reactive or nonreactive, depending on whether or not the fetus’s heart rate increases normally. A biophysical profile measures the fetus’s heart rate, breathing, movement, and amniotic fluid levels. Because growth restricted fetuses often do not get enough oxygen before birth, they are less likely to tolerate contractions from labor.

connexions

49

The biophysical profile and nonstress test results help obstetricians determine if the baby needs to be monitored more closely or if the fetus needs to be delivered, even if the fetus is not yet full term.

Post-birth Challenges

While many growth restricted babies do well after birth when they are born near their due date, they are more likely to have several health challenges. These babies are more likely to have a low blood sugar, jaundice, and thicker blood. They are also more likely to need oxygen to help them breathe and heat to help them stay warm.

These tiny babies do not have much reserve to keep their blood sugar normal. While many of these babies can successfully breastfeed or bottle feed without needing help with their blood sugar, some need a special formula with extra calories, a temporary feeding tube, or intravenous (IV) sugar. Babies who have a low blood sugar are often shaky and do not eat well.

Tiny babies are also more likely to have jaundice, which is caused by a buildup of bilirubin that causes a yellow color to the skin. Jaundice is common after a baby is born, and most babies do not need treatment. However, sometimes the level of jaundice is too high and needs to be treated with

50

connexions

special lights or other therapies.

Thick blood is caused by having too many red blood cells, which carry oxygen around the body.

The low level of oxygen before birth makes the fetus’s body increase the number of red blood cells in order to increase the amount of oxygen in the fetus’s body. However, these extra red blood cells can cause difficulty breathing and worsening jaundice.

Sometimes the thick blood needs to be treated with IV fluids and removal of the extra cells.

Babies with growth restriction are more likely to have a hard time breathing and need oxygen, not just due to having thicker blood, but also due to high blood pressure in their lungs. High blood pressure in the lungs is called pulmonary hypertension and often can be treated with oxygen and other therapies.

Because tiny babies do not have as much body fat, they have a harder time staying warm. Many of these babies may require extra heat and will need to stay in the newborn intensive care unit (NICU) until they can maintain their body temperature and grow without any extra heat.

Obstacles of Prematurity

Growth restricted babies are more likely to be born prematurely, before 37 weeks of pregnancy. In addition to the health risks that full-term growth restricted babies face, premature babies are more at risk for health challenges unique to premature babies. The earlier that these babies are born, the greater the risk of these health challenges.

These health challenges may include an infection called necrotizing enterocolitis, an eye disease called retinopathy of prematurity, and chronic lung disease of prematurity.

Necrotizing enterocolitis is an infection of the bowels. Most of the time, the infection is treated with antibiotics and bowel rest.

Bowel rest involves not feeding babies by mouth and using IV fluids or nutrition through an IV. Sometimes the infection is severe enough to require surgery and, in a few cases, can be life-threatening.

Retinopathy of prematurity is an eye disease that can cause blindness. Advances in how doctors take care of premature babies has decreased the number of babies with retinopathy of prematurity, and the babies who

have it are less likely to need treatment for it. Treatment usually involves either laser surgery or an injection of a medication into the eyes. Usually treatment can save the baby’s eyesight.

Chronic lung disease of prematurity is injury and inflammation of the baby’s lungs. It is caused by the immaturity of the lungs and the treatments that doctors conduct to help the lungs get oxygen into the body. Most babies with chronic lung disease do quite well, but sometimes these babies need oxygen for months or even may need a long-term breathing tube.

Sometimes premature babies who are growth restricted are so small that doctors cannot save their lives. Life-saving measures like putting in a breathing tube and IV lines become very difficult or impossible. There is no weight cutoff under which doctors definitely will not try these life-saving measures, though often babies who weigh less than about 400 grams, or about 14 ounces, will not survive even if the initial lifesaving measures are successful.

Affects into Adulthood

Later in life, children who were growth restricted may have challenges with their development.

This often translates to learning difficulties. However, sometimes the challenges with development can be as severe as having difficulty with eating, talking, walking, and taking care of themselves. Adults who were growth restricted as babies are more likely to have obesity, diabetes, and high blood pressure.

In adults and children who were growth restricted at birth, the brain is less likely to get the normal signals that the stomach is full after eating. This change leads to eating more than needed. In these adults, the body also tends to hold on to all the calories it can get.

This combination increases the risk of developing obesity.

To understand why adults who were growth restricted as babies are more likely to develop these health conditions, it is important to understand how genes work.

Genes are the genetic information passed down from parent to child.

This genetic information does not change over time. Genes make us look different from one another.

Genes are the reason that one person has brown hair and another person has blonde hair.

Genes do not make changes by themselves. They need to be translated from genetic information stored in cells into information to tell our body how to function.

Information from genes is translated into proteins, which are the workhorses of the body.

A singular way to understand how our genes work is to think of a dimmer switch. We do not need all the lights in our house to be on fully bright all the time. We may want fully bright light in the kitchen for cooking and dimmer light in the dining room for eating.

Similarly, our body decides when we need to spend energy to make more muscle after a workout or when we need to spend energy to digest food. Our body can make a little bit of one protein and a lot of another, depending on our needs at the time.

Growth restriction can reprogram when genes are on and off and how much protein they make.

This is like having the lights on fully bright in the dining room all the time, even when not necessary. This reprogramming of the genes is a survival mechanism to help a growth restricted fetus survive in an environment in which he or she is not getting enough nutrition during pregnancy. The genes of the growth restricted fetus are reprogrammed to hold on to all the calories that he or she gets.

As mentioned before, some of these reprogrammed signals can persist throughout life and can lead to health conditions such as diabetes and obesity.

Treatments + Care

There are currently no specific treatments for most causes of growth restriction, but researchers are still looking. While we understand how reprogramming happens, we do not yet have any treatments to restore the reprogrammed signals to normal.

In general, it is important for pregnant women to eat a healthy diet, stay hydrated, and follow up with their obstetrical providers.

For children and adults who were growth restricted at birth, it is important to maintain a healthy diet and exercise.

The good news is that most babies with growth restriction do well and lead full and happy lives. Being aware of the risks to the pregnant mother and baby can help parents prepare for a bright future with their tiny, but mighty baby.

Erin K. Zinkhan, MD, is a Neonatologist in Salt Lake City, Utah. She has published multiple peer-reviewed research articles about intrauterine growth restriction. Dr. Zinkhan runs the www.tinybutmightybaby.com website, a resource for parents to learn more about IUGR, and is writing a book about intrauterine growth restriction for parents (coming soon!).

connexions

51

A

photo courtesy of Vladislav Muslakov on Unsplash

Affecting 1 in 10 women of childbearing age, Polycystic Ovary Syndrome (PCOS) (also known as Stein-Leventhal syndrome), is a hormonal disorder that affects the reproductive and metabolic systems. The hormonal imbalance causes problems in the ovaries, the organ responsible for making the egg that is released during a healthy, monthly cycle. When PCOS is present, the egg may not develop correctly before release or may not be released at all. This often leads to enlarged ovaries, rimmed with small cysts.

How does all of this affect a woman's reproductive cycle? Improperly developed eggs or eggs that are not released during ovulation lead to problems such as infertility, and PCOS is in fact known to be a leading cause. The condition can occur at any point after puberty, but most women do not discover they have it until their 20s and 30s, when having trouble getting pregnant.

pcos + pregnancy: understanding the obstacles ahead by talitha a. mcguinness

52

connexions

Causes + Other Health Issues The exact cause of PCOS is currently unknown. Most doctors believe that several factors play a role, including genetics. Two other possibilities include higher than normal levels of androgens or "male hormones", which prevent ovulation from occuring, and higher than normal levels of insulin, which could lead to other health problems like obesity and type 2 diabetes. Other health issues that could follow include anxiety and depression, cardiovascular disease and even endometrial cancer. PCOS also does not discriminate against age or across races or ethnicities, and your chances are even higher of receiving a diagnosis if you have a female relative who has it, whether or not they have been previously diagnosed.

Research shows that 50% of women who have PCOS go undiagnosed.

Signs of PCOS There are a number of symptoms for PCOS, and the condition can be confirmed by blood test, ultrasound, a pelvic exam, and simply reading the clues of your body.

A few of the more common symptoms of PCOS include:

*irregular or missed menstrual cycles *cysts on ovaries (as seen via ultrasound) *acne (on the face, chest and back) *excessive hair (on the face or chin, and other body parts where men typically have more hair) *thinning hair or male-pattern baldness *weight gain *pelvic pain, such as severe cramps *excessive fatigue If you have experienced any or several of these symptoms, including trying but failing to get pregnant for more than one year, it may be time to discuss these symptoms with your doctor. Your medical care team can work with you on a plan for trying to manage your symptoms, while also setting you up to successfully reproduce.

While there is currently no known cure, there are several lifestyle changes to help manage symptoms.

Taking birth control pills will help restore hormone imbalances and regulate the cycle, losing weight, lowering insulin resistance levels, and taking androgen blockers to deal with the excess hair and acne are three of the most common possibilities. The overall goal is to get your symptoms under control and take it a few steps further should you choose to induce ovulation in attempts to get pregnant. However, it is important to know that should you get pregnant, you may need to stop taking some of the prescribed medications. Talk to your doctor to better manage your situation.

Pregnancy: Beyond a Diagnosis So what does all of this mean if you wish to get pregnant and have received a PCOS diagnosis? You might be wondering if the odds are stacked against you and is it even possible? While it may not be easy, there are options to help you on

your way. Here are a few places to start in helping your chances of getting pregnant with PCOS: *lose weight (consider a dietician for nutrition therapy) *get physical --- exercise is key *try medication to help induce ovulation and release eggs *engage in timed intercourse *attempt intrauterine insemination *be open to In Vitro Fertilization *consider minor ovarian surgery A few things to consider if you are successful at getting pregnant with PCOS is that there are risks to you and your baby during pregnancy. There are known higher than normal rates of: *Miscarriage *Gestational diabetes (which can lead to larger than normal babies) *Preeclampsia *Preterm birth *Longer labors *Delivery by C-section It is important to also understand due to a number of factors, including larger babies and higher morbidity rate at the time of delivery, that your baby has a higher risk of spending more time in a neonatal intensive care unit (NICU) after labor and delivery.

Whether you've been dealing with PCOS for years or have recently received a diagnosis, it is important to know that pregnancy is a possibility with the condition. Many women with PCOS have children, though it may have taken a little more time to get there. Begin talking with a reproductive endocrinologist in order to best understand how to increase your chances of getting pregnant, and focus on getting proper medical care before, during, and after pregnancy. This will ensure a healthy pregnancy and a healthy baby at delivery.

PCOS affects

1 in 10

women and is a leading cause for infertility.

Symptoms can be managed, but there is currently no known cure.

PCOS can last for years and impact overall health spanning a lifetime.

PCOS and pregnancy complications are very real.

Delivering a girl increases her chances of being diagnosed with PCOS by 50%. connexions

53

You're not just a pregnancy or a scared patient looking for answers.

We see milestones, moments and memory making, what every family hopes for and deserves.

The Fetal Health Foundation is the leader in patient family education and advocacy when it comes to fetal syndromes.

www.fetalhealthfoundation.org 54 connexions