Nationwide Children's Foundation - Winter 2023 Newsletter

Nationwide Children’s Hospital

A Letter from the Foundation

Ihope you are settling into the new year and that your 2023 is off to a good start. This will be a year of excitement for Nationwide Children’s Hospital.

Our newest research building will open in 2023. At seven stories tall, this new facility encompasses 285,000 square feet and will dramatically expand the research capabilities at the Abigail Wexner Research Institute. These new capabilities are vital for our extensive efforts to identify novel breakthroughs in the prevention and treatment of childhood disease. Research becomes medicine as it grows, evolves, and transforms.

Steve Testa President, Nationwide Children’s Hospital Foundation

For example, February is American Heart Month and congenital heart defects remain the most common birth defect in the United States. Innovative research has enabled us to discover new strategies for treating these birth defects that allow infants to live healthy lives well into adulthood.

In this issue, you will meet Paul – a patient born with a Congenital Heart Defect who is a thriving boy - as well as learn how CHD patients treated as infants and children progress to maintaining their changing health needs as adults. You will also learn more about children and families finding care closer to home as we approach the one-year anniversary of the transition from Mercy Health Toledo Children’s to Nationwide Children’s Hospital – Toledo. And as mental health continues to be at the forefront of a national health crisis – we share access to resources that you might find helpful in your own community.

I thank you for your incredible support and commitment. You make our breakthroughs possible with your generosity and advocacy. Thank you for everything,

Steve Testa

Nationwide Children’s Hospital – Toledo. One year later.

To create best outcomes for children, we have strategically built partnerships with collaborative pediatric healthcare systems.

Children and families from all over the country rely on Nationwide Children’s Hospital for care they cannot receive anywhere else. In order to serve more and more families, a key component of our new strategic plan is judicious expansion via important partnerships. Our mission is best served when we work together with other organizations to help the future of our children and our communities.

On March 1, 2022 Nationwide Children’s Hospital – Toledo opened. This strategic partnership enhanced pediatric healthcare services for children and their families in northwest Ohio and southeast Michigan.

This expansion enabled Toledo staff to improve urology services, onboard pediatric Ear, Nose, and Throat (ENT) providers, and build additional access to pediatric endocrinology.

The ENT providers have already proven to be busy. This new service line launched last May and provides the only pediatric fellowship-trained ENT surgeons in the region, seeing over 1,200 patients locally in Toledo through the clinic. This is a comprehensive program offering clinic services, outpatient procedures, and surgical intervention when necessary.

Also, a colorectal surgery clinic was launched in July 2022. By the end of October 2022, 12 patients had been seen with a total of 25 anticipated by the end of 2022. At the time of writing, one surgical procedure had been performed and another anticipated by the end of December.

In the Urology department, cutting edge robotic technology has been employed 11 times. These families would have previously had to drive to Columbus since we are the only organization providing robotic options for urology patients in the area.

By expanding to Toledo, the world-class care of Nationwide Children’s Hospital can be brought to more families. Reducing the need for travel while providing answers – right there at home – helps children get the help they need more quickly, and in a more comfortable way.

Adolescent & Adult Congenital Heart Disease Transition Program

TRANSITIONING ADOLESCENTS AND YOUNG ADULTS TO ADULT CONGENITAL HEART DISEASE CARE

The Adolescent & Adult Congenital Heart Disease program encompasses a heightened level of expertise, innovation, and advancements allowing us to provide our patients with life-long cardiac care within a caring, family-centered environment.

This shift for adolescents from child-centered to adult-centered care is a gradual process that The Heart Center at Nationwide Children’s Hospital calls the Transition Program.

While congenital heart disease (CHD) remains the most common birth defect in this country, major advances in medical and surgical care over the past 40 years means more than 90% of patients are living into adulthood. The result of this is a large rise in the adult congenital heart disease population.

Adolescents and adults with congenital heart disease have different things to think about compared to children. As they become adults, they may develop

new problems and should continue to be followed by a congenital heart specialist to keep their heart healthy. Most adult cardiologists are not trained in congenital heart disease, so special centers have been developed across the country to care for adolescents and adults with CHD. Nationwide Children’s Hospital is fortunate to have one such specialized program, allowing adolescents and adults to continue their cardiac care with practitioners and facilities they are familiar with. This shift for adolescents from child-centered to adult-centered care is a gradual process that The Heart Center at Nationwide Children’s Hospital calls the Transition Program.

As children become adults, they may believe that they are ‘fixed’ or ‘cured’ due to a perceived lack of cardiac symptoms or are not well educated about their heart defect. Goals of transitioning from child to adult heart care emphasize the importance of the patient learning about their heart defect and the need for ongoing specialized heart care throughout adulthood so that they can assume responsibility for their health care.

5%

In 2005, it was estimated that for the first time in history, there are more adults living with CHD than children

Currently, there are estimated to be over 1 million adults with congenital heart disease in the United States and this number continues to grow about 5% each year.

Across the United States, less than 10% of ACHD patients are receiving the recommended cardiac care.

Where Are They Now?

Paul’s mom and dad call him a miracle and are certain he is meant for great things in his very bright future! Last fall, Paul entered first grade and loves school and his teachers. He is very active - riding horses weekly with his mom, swimming twice a week, and is a Tiger rank in Cub Scouts with his dad as Scout Leader. Paul loves Jurassic Park/World, dinosaurs, Legos, racing games, and his favorite dinosaur T. rex.

At one point however, Paul’s parents, Jaclyn and Bryan, were told that he may not survive to be a teenager.

After 5 years of attempting to have a child, Jaclyn and Bryan were ecstatic to discover they were pregnant while in the process of filing for adoption. Jaclyn describes her pregnancy with Paul as amazing –despite ‘a lot of morning sickness,’ she was grateful to be carrying the baby they had always wanted and loved every moment.

Following his debut, Paul seemed to be a healthy and thriving newborn and Mom and Dad were feeling blissful that everything was absolutely perfect. Until it wasn’t.

During his 36-hour checkup, after hearing a heart murmur, Paul was taken to the Neonatal Intensive Care Unit for an echocardiogram. Tests revealed that Paul had a Congenital Heart Defect (CHD) called Tetralogy of Fallot.

Tetralogy of Fallot is a CHD that is made up of four problems and results in not enough blood flow to the lungs. They were told without open heart surgery Paul would not survive to be a teenager.

Congenital heart defects are structural problems arising from abnormal formation of the heart or major blood vessels and are the most common type of birth defect. CHDs affect 1 in every

120 births each year in the United States. And nearly 1 in 4 babies born with CHD has a critical CHD – meaning they require surgery or other procedures before their first birthday.

Bryan and Jaclyn wondered how this could possibly be happening, especially when looking at him, one wouldn’t even know Paul was sick. Babies born with Tetralogy of Fallot are often called ‘blue babies’ because their skin seems to have a blue tinge, due to poor oxygenation. Paul was considered a pink ‘tet’ baby, because his oxygen saturation remained near 100. Typically, with Tetralogy of Fallot, the heart shunts blood from the right side to the left side, sending oxygen poor blood to the body. Instead, Paul’s blood shunted from the left to right sides of the heart, keeping his oxygen levels very high, but causing constriction of the pulmonary blood vessels and risking permanent lung damage due to this increased blood flow.

At just 4-½ months old, Paul had open

heart surgery. Dr. Toshiharu Shinoka was able to completely repair Paul’s heart. Paul continues to be followed closely by Nationwide Children’s Hospital, requiring yearly echocardiograms and checkups – and continues to have zero restrictions on his activities and takes no medication.

While there is no cure for CHD, ongoing progress in diagnosis and treatment – through surgery and heart catheterization - make it possible to treat most defects, even those once thought to be hopeless.

18 Distinct CHDs

At least 18 distinct types of congenital heart defects are recognized, with many additional anatomic variations.

CHDs affect nearly 1 in every 120 births - or about 40,000 - per year in the United States.

1 in 4

1 in every 120 babies with a CHD have a critical CHD.

Infants with critical CHDs generally need surgery or other procedures in their first year of life.

COMMON OF HEART

TYPES DEFECTS

American Heart Association

VSD

The most common type of heart defect is a ventricular septal defect - VSD.

Congenital heart defects CHDs

are structural problems arising from abnormal formation of the heart or major blood vessels.

The prevalence of some mild types of CHD is increasing, while the prevalence of other types has remained stable.

Children’s mental health was a national concern pre-COVID-19. Now, with the added stressors of the ongoing pandemic and issues of racial justice, climate concerns and violent events, children’s mental health is more important than ever.

Recognizing that children’s mental health has been one of the least talked about issues in pediatrics, Nationwide Children’s Hospital has stepped up to respond with the creation of On Our Sleeves, the movement for children’s mental health. Since its inception in 2018, On Our Sleeves has grown nationally to reach more than 3 million people in all 50 states with educational content.

On Our Sleeves is based on the idea that kids don’t wear their thoughts on their sleeves, so we don’t know what they are going through. Its mission is to provide families in the United States access to evidence-informed educational resources, powered by the experts from Nationwide Children’s. On Our Sleeves works to make sure everyone has an understanding of what mental health is – and that all children have mental health – by providing easy to use, accessible resources informed by research. Those resources help kids build mental wellness skills; increase understanding of children managing a behavioral health diagnosis; and help adults understand the warning signs and how to seek help when a child is approaching a crisis.

EDUCATIONAL RESOURCES FOR HOME, SCHOOL, AND WORKPLACE

An example of resources made available is On Our Sleeves conversation starters. Allowing children to have a regular, open space to share their thoughts, feelings and emotions can increase the likelihood that parents and caregivers will notice when their children need support with mental health concerns. Conversations at the dinner table, in the classroom, with our co-workers—heart-to-hearts so we learn about problems, get solutions, and build confidence along the way.

To help parents, caregivers and educators take the first step, On Our Sleeves launched Operation: Conversation, a program to encourage adults to sit down with the children in their lives to start — and most importantly continue — conversation to support mental health. This program offers helpful resources on starting general conversations as well as difficult conversations and topics for specific times of year, such as back to school.

Operation: Conversation features free conversation starters, tip sheets, and educational resources to open the lines of communication between caregivers and children. It also shows caregivers how to react to conversations in a positive way that helps build a healthy relationship and that won’t lead children to shut down, feel worse or not be open to talking in the future.

Make it a little easier to start the habit of communication— and keep it going (the most important part!) with our expert-developed resources and support materials. Scan the QR code to download this packet full of conversation starters, worksheets, helpful tips, and more for you and your family.

For School

FOR SCHOOLS

On Our Sleeves also supports another audience integral to children: educators.

Classroom conversations are key—mental health challenges are a barrier to children’s education, after all. Educators are encouraged to join us, using grade-specific resources as a guide. the curricula and resources are designed to help educators explore topics such as self-care, emotions, and stress.

Scan the QR code to access educator resources.

A recent classroom resource includes a collaboration with GoNoodle on a video series called The Mooderators. Clara and Skylar, two pre-teens, talk through their emotions and how to cope in this six-part video series aimed at children in grades first through fourth. Teacher and parent guides with activities complement the video series so educators can watch the videos and further explore the concepts learned.

FOR THE WORKPLACE

Children’s mental health also affects the workforce.

In 2021, On Our Sleeves set out to research how children’s mental health affects the workforce and how employers could support children’s mental health. Research was conducted with 5,406 working parents and caregivers across the country in partnership with the Nationwide Foundation to understand the current state of concern about children’s mental health, parents’ confidence in caring for their children’s mental health and the impact children’s mental health has on employers.

The results showed that children’s mental health has a large and direct impact on corporate success. Working parents noted that they are under increased stress because of concerns over their children’s mental health, and it is affecting their work. Further, the data showed that parents want to reach a state of confidence in their ability to help their children meet mental health challenges. View results of the workplace research by scanning the QR code above.

The result of this research was the creation of an online curriculum, “Bloom: Growing Kids’ Mental Well-being,” designed to help parents confidently support their kids’ mental health. Short courses and clear resources focus on the topics parents are asking for, including:

• Building mental wellness habits

• Starting mental health conversations

• Recognizing when kids need help

Early pilots show that parents see an increase in confidence around parenting and find the content helpful and relevant to their families’ situations. Learn more about Bloom by visiting: OnOurSleeves.org/Workplace.

On Our Sleeves is continuing to listen to parents, educators and employers about their concerns about mental health and work to create more resources to start these integral conversations and boost mental health and wellness.

FOLLOW US :

https://www.facebook.com/OnOurSleeves

https://www.instagram.com/OnOurSleevesOfficial/

https://twitter.com/OnOurSleeves

https://www.youtube.com/c/OnOurSleeves

LEARN MORE BY SIGNING UP FOR THE WEEKLY EMAIL AT: OnOurSleeves.org/Sign-Up

To purchase a 52-card deck of On Our Sleeves Conversation starters, visit: OnOurSleeves.org/Take-Action/Shop-Merchandise

SCAN QR CODE

SCAN QR CODE

The Impact is Felt

While the final tally is still pending – you helped our Children’s Miracle Network partners raise more than $3.8 million to support Nationwide Children’s Hospital in 2022! That is extremely impressive – even more so when you consider that amount is raised primarily with ‘spare change.’

Coupled with your generosity, we are extremely grateful for our corporate partners and their dedicated associates for making these giving opportunities available. They actively share our mission to help children locally with our excellent care, no matter the family’s ability to pay, and to benefit children around the world with groundbreaking research.

Throughout the year, while you are shopping, consider visiting these Children’s Miracle Network Hospitals partners to support Nationwide Children’s through campaigns they run throughout the entire year.

Year Round Campaigns:

You helped our Children’s Miracle Network partners raise more than $3.8 million to support Nationwide Children’s Hospital in 2022!

Are You a Secret Admirer?

Every year, Nationwide Children’s Hospital receives gifts from supporters who, unbeknownst to us, have included the hospital in their estate plans. These surprises are encouraging and inspiring but leave us wishing we could have honored the donor by thanking them during their lifetime.

Making a planned gift to Nationwide Children’s is a significant decision. You are providing for future generations of children and creating a legacy that makes a lasting statement about what mattered to you most.

When you make us aware of your intention to leave a gift to Nationwide Children’s in your will or trust, we will welcome you as a member of the Kilbourne Society. Named for Colonel James Kilbourne and Mrs. Anna Kilbourne, founding members and lifetime supporters of Nationwide Children’s, the Kilbourne Society is designed to provide personal recognition to these donors. As a member, you will be invited to special events, be included on our donor recognition wall (or remain anonymous if you prefer) and have a oneon-one relationship with our planned giving staff who can offer assistance customized to your needs and goals.

OUR COMMITMENT TO YOU

Nationwide Children’s is committed to maintaining the highest standards of ethics and continuing to be worthy of your legacy support. When you notify us of your plans, we promise that:

YOUR PRIVACY WILL BE RESPECTED.

YOU HAVE THE RIGHT TO CHANGE YOUR PLANS.

YOUR GIFT WILL BE USED THE WAY YOU INTENDED. 1. 2. 3.

If you have included Nationwide Children’s in your will or trust, or by beneficiary designation, we hope you will let us know and not remain a secret admirer. It is a privilege to get the chance to thank donors who have included us in their plans.

If you have questions or would like more information, contact:

Lori Caldwell Aiello, JD, CAP ® Director, Planned Giving, Nationwide Children’s Hospital Foundation 700 Children’s Dr., Columbus, OH 43205

Tax

Across the nation, golf events that raise crucial funds to support a cause are par for the course. Thanks to our friends at the Memorial Tournament presented by Workday and the Nationwide Children’s Hospital Championship, 2022 was a hole-in-one!

The 47th playing of the Memorial Tournament presented by Workday was held in May 2022, with Billy Horschel the winner by four strokes. But the real winners of the tournament were the Memorial’s collaborating charitable partners, Nationwide Children’s Hospital, Stephen and Ayesha Curry’s Eat.Learn.Play Foundation, and the Nicklaus Children’s Health Care Foundation. The 2022 tournament raised $4.151 million for Nationwide Children's and the collaborative programs of the three partners, the first time the Tournament’s charitable giving total topped $4 million. Since it began in 1976, the Memorial has raised nearly $46 million in donations to charity, with nearly $32 million going to Nationwide Children’s.

A short drive to the south, the Korn Ferry Tour hosted the 16th edition of the Nationwide Children’s Hospital Championship in August at The Ohio State University Golf Club – Scarlet Course, with 120 golfers from around the world. The Championship also brought in more than $3.3 million for Nationwide Children’s Hospital, the second year in a row it’s raised more than $3 million!

As Tim Robinson, CEO of Nationwide Children’s, said, “the tournament not only supports our patients; it also supports our research and discoveries, ultimately benefiting children with cancer all over the world. The Championship and its sponsors, volunteers and spectators make a real difference in the lives of families. Nationwide Children’s is so grateful to be part of this tremendous event.”

We’re extremely grateful for all that the Memorial Tournament presented by Workday, the Nationwide Children’s Hospital Championship, and the thousands of fans who attended this year’s tournaments have done for our patients and their families.

OUR THANKS FOR A RECORD-BREAKING YEAR!

They certainly raised the ‘par.’

Become a Patient Champion

At Nationwide Children’s Hospital, we believe that every child that walks through our doors is a champion. Whether they are faced with an ear infection or a bone marrow transplant - every patient has a unique story. A story that can make a difference.

Our Patient Champions program is dedicated to recognizing our patients and providing opportunities for them to share their stories. These opportunities range from being featured in written publications to appearing at our annual events, including the Nationwide Children’s Hospital Columbus Marathon & ½ Marathon and the Memorial Tournament presented by Workday.

By sharing your experience, you could put another parent or patient at ease, spread awareness about the different programs here at the hospital, or show your gratitude to your child’s care team.

REGISTER FOR THE 2023 On Our Sleeves ® 5K PRESENTED BY THE BIG LOTS FOUNDATION

The On Our Sleeves 5K presented by The Big Lots Foundation is a community run and walk to grow awareness, break stigmas, and raise funds for the On Our Sleeves movement for children’s mental health.

It’s $1 to register with a commitment to raise or donate a minimum of $50 by May 6, 2023. All participants (virtual or in-person) will receive a t-shirt and medal. Use your personalized fundraising portal, and as you reach fundraising milestones, you will become eligible for exclusive On Our Sleeves gear and more!