UR Medicine's Golisano Children's Hospital - Strong Kids magazine 2019 Volume 3

UR MEDICINE’S GOLISANO CHILDREN’S HOSPITAL NEWS NEWS UR MEDICINE’S GOLISANO CHILDREN’S HOSPITAL

Complex Care Center Helps Transition Kids to Adult Care

Photos from the 2019 Gala

2018 VOL. VOL. III 2019 III

Behavioral Health and Wellness Building Update Golisano Children’s Hospital | 2019– V3

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In pediatrics, we tend to focus on specific challenges that children face as they enter different phases of their life. During the prenatal period, we emphasize maternal health.

As children grow and become toddlers and preschoolers, we concentrate on creating safe and stimulating environments for them. And when they become pre-teens and teens, behavioral and mental health takes center stage.

For some of our patients, however, there is no beginning, end, or middle. They enter this world with complex medical conditions that present unpredictable challenges at every turn. Thanks to advances in care and resources, these patients live longer than ever, but this positive change requires new strategies to manage their health care into adulthood. That’s where the Complex Care Center — led by Tiffany Pulcino, M.D., M.P.H. — comes in.

At their core, the Complex Care Center team are advocates — advocates for children and their parents as they begin to navigate the unknown world of adult medicine. As we enter the year-end funding drive, we hope that the following profiles on Complex Care Center patients, their families, and our team that treats them inspire you to lend support to this often-underlooked, but vital part of our mission.

This mission — improving children’s lives — spans all age groups and health conditions, and is a core part of several initiatives — both new and existing — that we are excited to share with you. Stay tuned for our next issue in the New Year for a major announcement!

Sincerely,

Patrick Brophy, MD, MHCDS Physician-in-Chief, Golisano Children’s Hospital William H. Eilinger Chair of Pediatrics

Golisano Children’s Hospital Board of Directors

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Mike Goonan, Chair* Mike Buckley Al Chesonis Jeffery Davis Roger Friedlander Jay W. Gelb John Halleran James E. Hammer Howard Jacobson Jennifer Johnson Todd Levine Scott Marshall Gary Mauro

Kim McCluski* Kathy Parrinello, R.N., Ph.D. Brian Pasley Dante Pennacchia Ann Pettinella Jenni Ralph* Mark Siewert* Mike Smith* Steven Terrigino Donald Tomeny James G. Vazzana Alan Wood Bruce B. Zicari II

Faculty

Ex-Officio

Kate Ackerman, M.D. Susan Bezek, M.S., R.N., P.N.P. - B.C. Mitchell Chess, M.D. Richard E. Kreipe, M.D. Karen Powers, M.D.

Kellie Anderson* Patrick Brophy., Ph.D.* Steven I. Goldstein Douglas W. Phillips R. Scott Rasmussen* Kelly McCormick-Sullivan Mark Taubman, M.D.

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Honorary Members Michael Amalfi Bradford C. Berk, M.D., Ph.D. Joseph L. Carbone, D.P.M David F. Christa Judy Columbus John L. DiMarco II Wanda B. Edgcomb Harvey B. Erdle Timothy D. Fournier Jack Goodrich Deborah Haen Nick Juskiw Elizabeth R. McAnarney, M.D.* Thomas McInerny, M.D. Gail Riggs, Ph.D. Nancy Robbins Jeffrey Rubenstein, M.D., M.P.H.

*Executive Committee

Above, Golisano Children’s Hospital patient Jacob Noyes gets a graduation party from his care team; the celebration helps teens make the transition from pediatric to adult health care.

From Childhood to Adulthood: Helping Patients Make Their Way

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ife is full of exciting milestones — and graduating to adulthood is a big one!

For children born with lifelong, complex health conditions at Golisano Children’s Hospital, the newly formed Transitional Care Medicine team guides them through the sometimes-tricky path from “kid” to “grown-up.” Turn the page to meet four of its extraordinary young patients, and see how Transitional Care Medicine is helping them go forward to live their best lives.

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Paths of Transition: BIG SURGERY

COMPLEX DIAGNOSIS

TROUBLE WITH SCHOOL

LIFELONG DISEASE

Children born with complex medical conditions face lifelong challenges; Rochester’s Complex Care Center offers specialized health care to guide their transition to adult care. Every patient’s story is unique, and so is their life’s path, as shown here.

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JACOB: Jacob Noyes was born with Down syndrome and a heart defect; he has had more than 40 surgeries and procedures.

Well known and loved by the GCH team, he has graduated to adult care with help from the Complex Care Center.

As Varied as the Landscape

ADULT SIZED ISSUES

CHRONIC PAIN

CANCER DIAGNOSIS

ADAM: Adam Szczesny may be nonverbal, but he’s a passionate communicator.

After a long struggle finding the right doctor, the Complex Care Center and Heather Busick, M.D., M.S., were the first to connect with him.

NICK: When Nick Fioravanti was diagnosed with cerebral palsy before his first birthday, his parents dedicated themselves to providing him with a high quality of life. With the Complex Care Center’s help, he has thrived.

NADIA: Nadia Fulford has struggled with painful sickle cell disease. With help from her Complex Care Center team, she has learned how to manage the condition so she can focus on the future with her 4-year-old son.

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smooth transition,” she said. “But too often it can feel like stepping off a cliff and into the unknown.”

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hanks to medical advances and the support of their families and communities, babies born with Down syndrome, sickle cell, cystic fibrosis and other childhood-onset conditions are going farther and doing more with their lives than ever before: school, careers, even starting families of their own.

But to reach their full potential, these young adults will need appropriate health care and ongoing support to manage lifelong medical challenges. That kind of care isn’t widely available yet, but UR Medicine’s Division of Transitional Care Medicine is one of the first in the nation to offer it.

Its efforts are just beginning, but already yielding important gains: its patients are seeing significant reduction in health complications that require emergency room visits and preventable hospital stays.

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FROM CHILDHOOD TO ADULTHOOD: AN OFTENROCKY PASSAGE

Tiffany Pulcino, M.D., M.P.H., is UR Medicine’s chief of the division of Transitional Care Medicine and founder of the Complex Care Center, a primary care practice designed for adult patients living with childhood health issues. She and her colleagues have been working to build a way forward for patients as they age out of pediatrics.

“It is a natural process for children to grow into adulthood, so the shift from pediatric to adult medical care should be a

In most cases, patients “graduate” from pediatrics to adult care when they are 19. That shift can be difficult even when patients are generally healthy: Young adults living on their own, with no primary care physician and no experience in self-care, may not know what to do when they get sick.

“They often delay seeking treatment and develop acute medical problems,” Pulcino said. “That’s why healthy young adults aged 18 to 24 are the second-highest users of emergency departments in this country — right after people who are 75 and older.”

The situation is even tougher for patients with chronic, childhood-onset conditions. Their health requires careful management, but most young patients haven’t built those skills because their parents have supported their needs from birth. Their medical conditions might cause physical impairment and difficulty communicating, and make it difficult to live independently or find steady employment. Patients may have trouble accessing reliable transportation to health appointments, and the numerous specialists they need to see may be scattered all over town.

And perhaps the biggest challenge of all: Traditional primary care practices aren’t designed to offer the kind of care and support they need. Many young people with complex conditions end up staying with their pediatric practice longer than usual because they have no place to go. But the growing numbers of patients heading toward adulthood means new solutions are essential. continued on page 9

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CLINICAL SERVICES

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LOCATION MEDICAL PRESCRIPTIONS

DENTAL CARE

PRIMARY CARE AND CONSULTATION SOCIAL WORK MEDICAL LAB CARE MANAGEMENT PHYSICAL & OCCUPATIONAL THERAPY

NURSING

BEHAVIORAL HEALTH

RESPIRATORY THERAPY

PHARMACIST CONSULTATION

NUTRITION CONSULTATION

INPATIENT CARE

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JACOB NOYES

MANAGING TRANSITION WITH CARE

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Wearing a graduation cap and a beaming smile, Jacob Noyes embraced a dozen nurses and doctors — who all knew him by name — in the teen lounge of Golisano Children’s Hospital.

“Jake, you’re here!” said Amber Cook, a child life specialist, as she gave him a hug.

“We are going to miss you so much!”

The team had gathered to celebrate Jake’s last stay at the hospital by holding a special graduation ceremony for him, complete with a cake and a special song prepared by music therapist Rosie Obi. The celebration was bittersweet — over the years, the hospital had become Jake’s second home.

Jake, now 21, was born with Down syndrome and a rare heart defect. He has faced countless health challenges, including more than 40 surgeries and procedures, and has been admitted to the hospital dozens of times. But after he turned 18, his team knew that the time was coming for Jake to move on from pediatrics and into the adult world. His mom, Kerri, was apprehensive.

“It was nerve-wracking. At the children’s hospital, he knows everyone, and everyone knows him,” said Kerri. “We felt comfortable there because of everything they have done for him over the years.”

Her concerns were compounded by another health crisis in the spring of 2018.

Every time Jake tried to swallow food, liquids, or saliva, he’d absorb it into his lungs, putting him at risk for life-threatening complications. To determine why this was happening, Jake’s care team consulted with Christian Peyre, M.D., an adult thoracic surgeon at UR Medicine, who was able to identify the problem and put Jake on an appropriate treatment plan.

“Jake’s care team did a great job of slowly involving adult physicians, and that really eased the transition for us,” said Kerri. “Dr. Peyre was incredible, and getting to know him and some of the other adult providers calmed my nerves.”

The next step in Jake’s “graduation” was a visit to the Complex Care Center,

which serves adults with complex childhood onset conditions. Francis Coyne, M.D., a medicine/pediatric specialist, became Jake’s primary physician and managed his transition into adult services.

As part of that process, Coyne — with help from the teams at the children’s and adult hospitals — created a comprehensive care plan for Jake and began to manage all the communication between Jake’s specialists, from his cardiologist to his pulmonologist and his surgeons. Jake and his family were also able to go on a tour of the adult unit of Strong Memorial Hospital, thanks to the efforts of Megan Train, D.O. “It’s a team effort to care for patients like Jake and help make their transition to the next phase of their medical lives as smooth as possible,” said Coyne. “Years ago, many children with chronic diseases weren’t living into adulthood. Now, thanks to medical advances, they are, and as a result, we’ve had to create a new system for how to best give patients the care they need as they ‘move up’ to the adult world.”

Earlier this year, Jake faced another serious complication, and Coyne was on

the phone with Kerri every night, monitoring the situation and communicating with other specialists to get their input.

Luckily, Jake was able to stay out of the hospital.

But if he does have to be admitted, the team will aim to have Jake admitted on the sixth floor at Strong Memorial Hospital, where doctors receive training in caring for both children and adults. The team there also makes an effort to give Jake a private room, since Kerri stays overnight with him when he’s in the hospital.

For now, Jake is healthy and he’s ecstatic to be back at school. As for Kerri, the transition has gone much smoother than she initially expected.

“I’ve gone to bat for Jake for a really long time, but to have a doctor like Dr. Coyne really advocating for him — it’s huge,” said Kerri. “The Complex Care Center is working hard to ease the transition between pediatrics and the adult world, and because of them, I feel confident that Jake will get the best care possible.”

The multi-disciplinary, multi-talented Complex Care Center team works closely to address every aspect of their patients’ health care needs.

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BUILDING A PATH FORWARD Over the past several years, Pulcino has led UR Medicine’s efforts to create medical systems that meet their unique needs, including:

The Complex Care Center for comprehensive outpatient care.

The center opened in 2016 to integrate primary care with many other clinical services under one roof and provide team-based care management to help patients stay as healthy as possible.

Integrated dental care provided by the Eastman Institute for Oral Health incorporates a critical but often overlooked component of patients’ overall health. Behavioral health, physical therapy, occupational therapy — these and other specialty services are integrated with primary care so patients have many needs handled in one visit.

Offering behavioral health “allows us to care for the whole person,” said Kristen H. Davidson, Ph.D., director of Integrated Behavioral Health. “Our approach acknowledges the effect that childhood-acquired medical and developmental conditions have on an individual’s emotional well-being and quality of life. Our mission is to help our

patients live meaningful lives despite the daily challenges of their particular illness or disability. We work to help individuals acknowledge and accept things that are out of their control and utilize coping tools so they can engage in their lives outside the clinic to the fullest extent possible.”

The center takes a team-based, proactive approach to patient care — with everyone contributing to care plans for patients who are at the clinic and in the hospital. The team also meets frequently to plan support for those facing big challenges such as organ transplants. Its partnerships with national organizations are an important resource, said Donna Germuga, RRT, respiratory therapist.

“We recently participated in a Cystic Fibrosis Foundation program to help patients and families deal with life changes related to lung transplants.

That not only benefits our community, but gives us a voice to define standards for transplant referral, which helps the national community.”

Access to the right care, and a caring team of people who help patients navigate health challenges, has yielded big dividends. The center’s approach has helped patients avoid preventable, stressful health emergencies. Since

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ADAM SZCZESNY

MEETING THE PATIENT WHERE THEY ARE

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Like many patients who receive treatment through the Complex Care Center, Adam Szczesny has fought through a rough and unpredictable journey.

He was born with a condition called Deletion of Upper Arm Number Seven Chromosome. It’s caused by a missing copy of genetic material, and the severity of the condition varies. For Adam and his mother, Norann Shiner, the symptoms have been ever-evolving: aphasia, leukemia, severe osteoporosis, diabetes, bone deformities, and seizure disorders are a few of the issues he has faced and survived.

“It’s hard to describe his condition because it’s just so much,” said Norann.

For years, Adam and Norann shuffled through primary care doctors. Although Adam is non-verbal, he uses a device that verbalizes words for him and knows limited sign language. Yet many doctors “didn’t know what to do with a nonverbal kid with so many medical conditions,” according to Norann. In one initial meeting with a primary care specialist, the doctor said hello to his staff but not to Adam and

Norann. “Adam rocked his wheelchair as if to say ‘talk to me,’” said Norann.

Eventually in 2017, Norann set up an appointment at the Complex Care Center. During their first appointment, the difference was immediate: “They talked to Adam first, and if he couldn’t help answer a question, then they would talk to me,” she said.

This approach is by design, according to Heather Busick, M.D., assistant professor of clinical pediatrics and internal medicine and practitioner in the Complex Care Center.

“This kind of care requires both time and the mindset to meet the patient where they are,” she said, “We make a conscious effort to move them to an adult model where they are more at the center of care; and the individual is empowered to participate to the best of their abilities.”

Also critical is having a supportive caregiver who can help translate when communications do break down. “Norann is a spectacular interpreter for Adam,” said Busick. “She is a key aspect in his care.”

This connection has helped Complex Care Center doctors serve as lifelong advocates for Norann and Adam — they help with everything, from managing hospital visits to coordinating medication prescriptions at Adam’s group home in Greece. “When you’re admitted to the hospital you typically don’t see your primary doctor,” said Norann, “but the Complex Center handles your admissions, follows you to the hospital, and is with you every day.”

Norann visits Adam, 33, daily at his group home. Adam needs consistent attention: a recent surgery heightened his seizure risk, and the next seizure could fracture his spine in multiple places. Communication between caregivers and group home staff is critical for his safety. While Norann previously worked all weekend to coordinate his treatment with the group home, the Complex Care Center has taken up this task.

Norann credits Busick, Tiffany Pulcino, M.D., M.P.H., and the dedicated staff for their proactive work in coordinating care for Adam across all facets of his treatment plan. “Dr. Busick doesn’t just look at one thing, she looks at the whole.”

For Norann, the experience with her son inspired her to become an advocate for all people with disabilities. She now works as an advocate and trainer for Starbridge, a Rochester nonprofit that helps raise the quality of life for people with disabilities and their families.

Given her decades of experience working with people with disabilities — personally and professionally — Norann sees the Complex Care Center as a prime example of the progress society has made. “Parents are speaking out more,” she said, “Over the past 20 years, the research and support has improved. Parents still struggle, but at least there are different advocacy groups out there and parts of the medical field supports them.”

continued from page 9 the center opened, it has achieved a 28 percent drop in ED visits for this patient population and an 18 percent drop in hospital readmissions.

Close teamwork — and trust in each other — help the team deliver efficient high-quality care, said Andrea Barry, R.N., B.S.N., a member of the center’s nursing team. “Our physicians trust our assessments and clinical judgments, giving us autonomy to identify patient needs quickly and recommend the right course of action.”

A formal policy to help patients navigate the shift from pediatric to adult care.

UR Medicine is the first health system in the country to create a Transitional Care Medicine division dedicated to helping young patients successfully move from pediatric to adult health care. For patients with complex needs, a good transition plan includes both outpatient and inpatient hospital settings, and is years in the making.

Francis Coyne, MD, is a physician with the Complex Care Center who focuses on planning patients’ transition from Golisano Children’s Hospital to the adult settings of Highland and Strong Memorial hospitals.

The prospect of shifting from pediatric to adult worlds is emotionally and physically challenging for patients.

“We’ve seen, for example, that patients with Type 1 diabetes have worse blood sugar control around the time of transition. Sickle cell patients can have flare-ups in their condition as well,” Coyne said.

“When patients are about age 12, we start introducing this idea of transitioning to adult care to give them and their parents time to process this change,” Coyne said.

KIDS WITH COMPLEX CONDITIONS TURNING 18 IN THE U.S. EACH YEAR

125,000 For outpatient care, pediatric providers also begin talking with patients in early adolescence. Patients with complex needs, who will require the level of care the Complex Care Center provides, get an in-person consultation with Coyne or one of his colleagues at about age 16.

The center collaborates with the child’s primary care pediatric and specialty providers on the path forward.

Prior to age 19, when patients will begin going to Highland or Strong Memorial for their hospital care, they get a tour of the adult facilities and meet care teams there. And during patients’ first adult hospital admission, both pediatrics and adult providers follow the patient to ensure a comfortable handoff.

Transition planning involves good communication between outpatient and inpatient providers. Health care providers in EDs and adult hospital units may be unfamiliar with patients’ special needs and challenges. To give them quick insight, the Complex Care Center creates a care plan document that lives in patient electronic charts. It includes: • Recommended treatments and medications, as well as precautions on what not to do • An overview of the patient’s outpatient regimen, including pain management, and special considerations such as sensory issues or communication challenges the patient may have

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NICK FIORAVANTI

EMBRACING THE BEAUTY OF LIFE — CHALLENGES AND ALL

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When Nick Fioravanti was diagnosed with cerebral palsy before his first birthday, his parents, Julie and Alex, decided he would live as full and joyful a life as possible.

To reach that goal, they have knocked down one roadblock after another.

Nick is 28 now, and he has been living “an amazing life” even though he has limited mobility in his arms and legs and requires daily help with dressing and bathing. He communicated non-verbally until he was almost 14, but with coaching from his family — especially his sister, Stephanie, and brother, Matthew — he began speaking in short sentences.

While outsiders might have seen insurmountable challenges, Nick and his family have always focused on what he can do, not what he can’t. And it turns out, he can do a lot.

“If the other two kids went sledding, Nick would go,” Julie said. “I figured out ways to make things adaptable: ice skating, rock climbing, swimming, kayaking.”

While at Penfield High School, Nick had a job delivering mail to faculty, and he now attends a daytime rehabilitation facility, which he calls “going to work.”

Every turn of Nick’s life has involved seeing a challenge and meeting it head-on.

So when it came time for Nick to transition out of pediatric care, Julie was ready for another roadblock. And at first, that’s what she found. Many traditional medical practices aren’t designed for her son’s physical or medical needs.

“Nick is in a wheelchair, and just getting into some of the medical practices we visited proved to be a daunting task. At one place, they asked Nick to get on a traditional scale so they could get his weight — not taking into account that Nick can’t even stand up on his own.”

Their journey brought them to the Complex Care Center. It immediately felt like a turn for the better.

“When we walked in for the first time, we saw the wide doors and halls, a wheelchair scale for patients, the lab right there.

This was the place for us.”

Their first meeting with Tiffany Pulcino, M.D., M.P.H., was also reassuring.

“Dr. Pulcino told us, ‘I know a lot of special needs parents have been fighting a hard fight for their child for so many years.

I want to let parents be parents, so we will fight for you — you can take off your boxing gloves now.”

With the Complex Care Center in their corner, things initially went smoothly for Nick and his family, but soon they would meet another roadblock. The biggest yet: a diagnosis of stage 3 testicular cancer.

The Complex Care Center team was ready to help Nick and his family.

Throughout Nick’s chemotherapy, team members at the hospital would check on him and update his family.

The treatment took a toll; Nick is 6’ 1” and his weight dropped from 135 to 99 pounds. All the verbal ability he had gained was lost.

“He had an amazing life before the cancer came and stole all that away,” Julie said. “The journey back from cancer has been really difficult.”

Fortunately, Nick’s health is back on track; at his last check-up in September

2019, he was 12 pounds heavier than his pre-cancer weight and was feeling well.

He’s regained his speech ”and it’s now coming back with a vengeance,” Julie joked. “He’s getting quite bossy!” While Nick had been going to work three days a week, lately he’s been asking to go every day.

Julie believes access to outpatient care that diagnosed the cancer quickly made all the difference. “If we hadn’t found Dr. Pulcino as his physician, I don’t think the testicular cancer would have been caught when it was or taken as seriously as it was. I think he is alive today because she listens to us so carefully and gets on things right away.”

For families that face challenges like hers, Julie has advice for navigating tough times.

“Remember that we are all disabled in some way, shape or form. Everyone has something different from other people. Parents like us are 28 years into this journey; for the ones who are just starting out and thinking, ‘This is the end of my life as I know it’ — I say, yes, but it’s the beginning of a journey you don’t even know yet. Allow yourself to grieve the life you thought you were going to have, but also be open to embracing the beautiful and wonderful experiences that come along with parenting a child with special needs.

At the end of the day, the benefits far outweigh the alternative, and that would be them not being with you at all.”

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Instructions for caring for the patient in an ED setting The information helps providers make the best choices for patients when time is critical. And it gives patients a voice in their hospital care, since Complex Care Center providers work with them to document their needs in the outpatient setting, before they need hospital care.

“It’s a way for patients to own their care and helps manage their anxiety,” said Ariadne Lie, M.D., medical director of the Complex Care Center. “For sickle cell and cystic fibrosis patients, who need frequent hospitalizations and may see a different care team each time, it has been very helpful. Emergency room providers love it because they don’t have to look through a medical chart that might have 30 years of medical history.”

“When we have a plan in place to help patients move from pediatric to adult care,

we see their comfort with the transition improve. And we see their overall health and safety improve,” Coyne said.

A GOODBYE CELEBRATION For patients who have had frequent stays at Golisano Children’s Hospital throughout their childhood, moving to an adult hospital isn’t just scary; it can be sad to leave people they’ve come to know and trust. To help them with the change, Golisano Children’s Hospital gives them a formal graduation ceremony hosted by the care team. Patients don a paper graduation cap handmade by a child life team member. Cake, balloons, and music make it a celebration, and a congratulatory poster signed by staff is a keepsake.

Graduation is a bittersweet moment for patients, parents, and staff. But it helps patients recognize and celebrate their new status as adults, and eases their anxiety about future hospital visits in a new place.

Comprehensive Care for People with IDD Transitional Care Medicine is an important component in the University of Rochester’s ongoing efforts to improve the health and quality of life for people with Intellectual and Developmental Disabilities (IDD). Ensuring access to health care is one of several initiatives underway. UR’s Del Monte Institute for Neuroscience is conducting research to better understand IDD and find new, innovative therapeutic approaches. UR is working to develop population health strategies to improve the level of health care people with IDD receive, and expand the network of community partnerships that can connect people with IDD with resources for employment, housing, and social services so they can live life to the fullest.

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NADIA FULFORD

FINDING STRENGTH FOR MOTHERHOOD

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Nadia Fulford was diagnosed with sickle cell disease very early in life, and she has spent all of her young life learning to live with it.

She had no choice, because there is no cure.

Even though she’s only 24, Nadia’s sickle cell disease makes her red blood cells stiff, twists them into a pointy sickle shape, and causes them to clump together to impede normal blood flow. The cells die early, leaving her short of healthy red blood cells.

Patients like Nadia suffer with infections, fatigue, and pain. They have a higher risk of stroke.

Treatments can help, but this is a disease that needs constant attention. When Nadia was a child, her mother would remind her to take the medications she needed, get her to the doctor for checkups, and bring her to Golisano Children’s Hospital for frequent stays.

Now Nadia is a mother to 4-year-old son, August. She’s taken charge of her life and her health.

It took her time to grow into this much responsibility. And it took courage: during her pregnancy, the illness caused blood clots to form around her lungs, putting her and her baby in danger. There were many trips in and out of the hospital.

Not long after, when she was 21, Nadia’s pediatric hematologist, Craig A. Mullen, M.D., Ph.D., told her she would need to find an adult primary care practice. He recommended Tiffany Pulcino, M.D., M.P.H. at the Complex Care Center.

“It was hard because I had been going to him since I was little,” Nadia said. “He knew me; he knew my illness. Now I have to go to this new place, this new doctor… what if she wasn’t as nice as Dr. Mullen?”

“It was scary going to see her for that first appointment. But she was there with open arms, and smiling, and she took time to get to know me before the ‘medical appointment’ part of it got started.”

Pulcino also noticed that Nadia was feeling discouraged and depressed, and put her in touch with a therapist for

support. She also gave Nadia her phone number and invited her to call if she needed anything. She’s been Nadia’s doctor ever since.

One of their first goals: helping Nadia build skills to manage her own care — including the more than two dozen pills she must take every day. Nadia learned to set alarms on her phone to remind her to take medicines.

At first, Nadia would miss some doses.

“When I got hospitalized more and more because I was dehydrated or not eating, I realized I needed the antibiotics and other medicines to keep me healthy.”

Now that she’s in a good place with preventive care, she’s also learned how to be her own advocate so she can continue to work part-time and raise her son.

“When people are sick, I have to be extra careful around them. I have to make sure that wherever I go, I have enough meds, water, ibuprofen, Tylenol. I keep a thermometer with me at all times. It’s a lot to deal with and live with.”

She likes that Pulcino doesn’t tell her what to do — instead, she asks Nadia

what her life goals are, and together they come up with a plan to help her get there.

It’s clear that Nadia has learned to speak up for herself when dealing with doctors and the people in her life.

“I’m the one living with this sickness; I’m not a little kid anymore. I have a child of my own. This is my body, my health. I know what’s best for me.”

She’s also found confidence and has her eye on the future. She’s working in a restaurant, and making plans to go to cooking school.

“I’m really proud of myself. I have a son now, and I have to take care of myself if I want to watch August grow up.

I still have this sickness — it’s my first ‘baby’ and it needs constant care. That’s how I look at it — I have to take care of the sickle cell ‘baby’ so I can be there for my real baby.”

The road from childhood to adulthood is not a fast or easy path for anyone, and especially not for someone with a lifelong illness. But Nadia has found her footing, and she’s on her way.

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THE ROAD AHEAD Pulcino and her colleagues have made great progress in just a few years. Here’s what’s ahead for the Complex Care Center and Transitional Care Medicine: Expanding the ability to care.

Like its patients, the Complex Care Center needs space and support to grow.

It provides care to approximately 1,000 adults and is still open to new patients.

But within the next year it expects to reach the capacity it can manage and still provide the level of care patients need.

The team has added additional primary care providers, but needs more space to see more patients and expand its roster of services.

“We could do so much more clinically if we had more space,” Pulcino said. “We could help patients by adding infusion services and more specialty services, in addition to training the next generation of clinicians.”

Right now, collaboration with local agencies is extending the center’s reach.

“By teaming up with local care coordination agencies from the Office of People With Developmental Disabilities, we are working to close non-health care barriers to patients’ well-being, such as transportation, employment, and housing challenges,” said Regina Dennis, the center’s manager of Community Care Management. A new transportation program the center offers helps patients make essential visits to pharmacies, community resources, and their benefits appointments.

Developing a more comprehensive

transition plan for all pediatric patients.

Every pediatric patient can benefit from a solid roadmap to take them from pediatrics to adult care. Transitional Care Medicine aims to develop consistent policies throughout the URMC system for hospital, inpatient and outpatient settings to help every child manage adult health care.

Access to outpatient care helps patients avoid illnesses that could require emergency treatment or hospitalization.

Another goal: strengthening the region’s network of caregivers via training and collaboration, said Amy Schwab Jerum, the Director of Workforce Development. “We can make a bigger impact by supporting the people who care for individuals with complex medical needs throughout our region,” she said.

“Our goal is to create an environment where healthcare providers can access our resources to build their knowledge base and access best-practice approaches to care.”

Exploring the best ways to care for

adult patients with complex needs, and sharing those discoveries. “This is

a new area for health care,” Pulcino said.

“It’s only been in the last five years in our region that the number of adult patients with childhood illnesses outnumbers children. We don’t have well-established plans for medications and treatments for adults. We are conducting research to advance our understanding of how these diseases progress in adulthood. In a sense we’re in unchartered territory, and we need to build the road as we go.”

“Our goal is to ensure that all our patients live their best life possible.

We want to make Rochester a model for community and health system collaboration to close the gaps in care, and help children find a fulfilling and healthy path from childhood to adulthood.”

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Adela Planerova, M.U.Dr., M.S., director of Dental Services at the Complex Care Center, with a patient.

Integrated dental care is an important offering for patients who often lack access to this service.

LUKE EASTBURG, M.D. RESIDENT, INTERNAL MEDICINE PEDIATRIC PROGRAM

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Spend just a few minutes with Luke Eastburg, M.D. and it won’t take long to see his passion for the field of medicine and helping patients, especially the sickest.

The fourth year resident in the internal medicine pediatrics program rotates through the Complex Care Center, a center he says is quite unique in his experience and unlike anything he has seen anywhere else.

“What stands out is the relationships that patients have with their doctors. Dr. Pulcino knows her patients completely. A lot of them have reasons to mistrust medical staff based on their previous experiences elsewhere, but they have complete trust in her. It’s hard to imagine what patients would do without Dr. Pulcino and the rest of their doctors,” said Eastburg.

Nadia Fulford discusses treatment with Dr. Tiffany Pulcino. Fulford has learned to manage sickle cell disease while caring for her 4-year-old son.

Come 2020, the native of Grand Rapids, Michigan will be the chief resident in his field and will work regularly at the Complex Care Center. He will also be responsible for taking care of patients from the Center who are taken to Highland Hospital for treatment. Eastburg is already quite familiar with the Center, not just through his rotations but also because of its location right next door to the residency clinic.

“It’s such a vital part of the health care system here. The patients at the Complex Care Center have numerous medical and psychosocial needs. The Center applies a multi-disciplinary approach to provide the best possible care for these patients.”

Over their four years of residency, every internal medicine-pediatrics resident (18 total) will spend time rotating

through the Complex Care Center. Upon completion of his residency, Eastburg plans to pursue a fellowship in Hematology/Oncology, areas he holds close to his heart for personal reasons.

“My father-in-law had acute myeloid leukemia. He passed away before my residency match. Going through that experience and seeing the relationship that he had with his oncologist and how much it meant to the family was an inspiration and prompted me to choose this field.”

But his love for medicine actually began as a child, and he let his parents know back then that he planned to become a doctor. Although some days in residency are harder than others, he still cannot imagine doing anything else. Eastburg appreciates the daily opportunity to help and support families during difficult times.

He is also drawn to the intellectual challenge of medicine and its requirement for life-long learning. In choosing the MedsPeds program, Eastburg values the training he’s getting with both adults and children.

“Med-Peds is really two residencies in one. All residents will be fully trained as pediatricians and internists after four years. The breadth and depth of our training prepares us to care for patients of all ages regardless of medical complexity. In particular, our program prepares us to take care patients with childhood-onset conditions such as sickle cell disease or cystic fibrosis as they age into adults.”

Rated as the best Meds-Peds residency program in the country, Eastburg feels honored to be a part of the UR Medicine team.

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Supporters Make Gala an Overwhelming Success Guests at this year’s Golisano Children’s Hospital gala experienced the tastes and cultures of different countries — from Italy to India to France — all while supporting the work that’s done right here in our backyard.

The event — including a generous matching donation from this year’s honorary co-chairs, Mark and Maureen Davitt — raised an incredible $1.3 million.

“We were very humbled to be asked to serve as this year’s honorary chairs,” said Mark and Maureen, who previously

donated $2 million to support the new hospital building in 2018. “We feel lucky that we are able to be part of such a giving community, and we believe that it’s vital that we keep supporting the hospital.”

The funds raised by the event will allow the hospital to purchase two dedicated pediatric ambulances. The state-of-theart ambulances, designed specifically for children, will allow staff to transfer children from other facilities faster and with better, high-tech equipment.

“Our team is often called upon to transport critically ill children from

Special thanks to the Cabot Group, which has been the gala’s presenting sponsor since 2008, as well as our other major sponsors:

Platinum sponsors: Drs. David & Kate Ackerman DGA Builders, LLC LeChase Construction Services Sage Rutty & Co. Team FSI & Imburgia Brothers Holding URMC Department of Orthopaedics & Rehabilitation Vision Automotive Group

Diamond Sponsors: Mark and Maureen Davitt Tops Friendly Markets Platinum Plus sponsors: EPIC Systems Hammer Packaging Rainaldi Brothers, Inc. William & Mildred Levine Foundation

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Tom Golisano’s granddaughter, Amy, gives thanks for the care her daughter, Marley, received at GCH

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Gold Sponsors: Howard Hanna The Pike Company Rochester Davis Fetch Corp.

Wisteria Flowers & Gifts

throughout our region to our hospital so that we can provide them with the intensive care that they need,” said Patrick Brophy, M.D., physician-inchief of Golisano Children’s Hospital.

“But ambulances aren’t necessarily set up for children, and don’t always have the equipment that our team requires, especially the blended oxygen that our neonates need. Having our own ambulance will drastically improve the care that we are able to provide to these children and their families.”

Silver Sponsors: Dermatology Associates of Rochester & Dermaspa G&W Railroad Ide Family of Dealerships J.T. Mauro Co. Kim and Steve McCluski/Michael Leone & Gillian Hargrave MVP Healthcare Paychex, Inc. Rochester Management

Thanks to matching donations from honorary co-chairs Mark and Maureen Davitt — GCH raised $1.3 million at the Gala

University of Rochester president Sarah Mangelsdorf with Gala presenting sponsor Mike Smith

Chair of the Gala, Jenni Ralph, owner of Wisteria, along with Mike Catalana, emcee for the evening

Rochester native and 2018 America’s Got Talent Finalist Daniel Emmet gave a standout performance

Department of Pediatrics chair Patrick Brophy, MD, and wife Jodi

“ To a Child You Are the World,” was the global theme this year

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S

tRo L L

Community unites to support children at annual Stroll for Strong Kids

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A special shoutout to this year’s top 10 teams: 1. Team Jordyn 2. Lauren’s Legacy 3. Mia’s Marchers 4. Craig’s Cookie Monsters 5. Osborne’s Friends of Strong Kids 6. Peter’s Posse 7. Team Addy 8. NICU Strollers 9. Amazing Grace Esposito 10. Growing Strong

M

SAVE THE DATE! Stroll for Strong Kids May 30, 2020

2020

ore than 12,000 people came out to support Golisano Children’s Hospital at the 23rd annual Stroll for Strong Kids on June 1. This year’s event raised $350,000.

“Every year at the Stroll, we are amazed by the generosity of our community. To see families come out in such large numbers to support the children in their lives is so heartwarming,” said Meghan Barnhardt, associate director of community affairs. “We are extremely grateful to our participants, volunteers, our committee, and everyone who makes this event possible.”

This year’s theme was First Responders, and Abbott’s Frozen Custard was the event’s presenting sponsor for the eighth consecutive year. Subway and Zweigle’s provided lunch for participants.

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Fundraisers Support New Facility Focused on Children’s Mental Health Two longstanding community fundraisers — the B&L Wholesale Charity Golf Tournament and Ali-Gaiters Clambake — have supported numerous initiatives at Golisano Children’s Hospital over the years, from the construction of the hospital to the creation of new operating rooms.

Ali-Gaiters Clambake

We need your help!

We are actively fundraising to support the new Golisano Pediatric Behavioral Health and Wellness Building. Funds raised will benefit the creation of the new building as well as new programs that will help provide better access to mental health care.

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To set up a fundraiser to support this project, contact Meghan Barnhardt at mbarnhardt@admin.rochester.edu, or make a donation at: giveto.urmc.edu/gpbh

B+L Wholesale Charity Golf Tournament But this year, the organizers of both events — along with many other supporters — are turning their attention to a problem that often doesn’t get the attention it deserves: the mental health needs of children.

In the past decade, the demand for mental health services among children and teens has risen dramatically. But a shortage of resources often means that patients have to wait to receive care, and for children at risk, that wait can be life-threatening.

The new Golisano Pediatric Behavioral Health and Wellness Building, set to open in 2020, will significantly expand the space and programs that are available for children suffering from depression, anxiety, psychosis, substance abuse disorders, and other behavioral conditions.

The building will help give kids the care that they need, but, the hospital still needs to raise $2.3 million for the project to be completed. That’s where the hospital’s supporters are stepping in.

“After we toured the current facility and saw how busy it was, we knew that we

wanted to help,” said Don Tomeny, B&L president. “With more and more teens suffering from mental health conditions, we saw how much this new building is needed.”

Tomeny and his team chose to direct the proceeds from this year’s 25th anniversary B&L tournament to the creation of the new facility. Thanks to help from more than 440 golfers and numerous sponsors, the 2019 event was able to raise $189,000 for the building.

In total, the company has pledged $500,000 to the project.

“The generosity of our supporters never ceases to amaze us,” said Scott Rasmussen, assistant vice president for Advancement at Golisano Children’s Hospital. “Now, as we turn to our community to help with this project, we are so grateful to these organizations and many others for giving back when we need them.”

Jackie Klube, the organizer of the Ali-Gaiters Clambake, said she, too, was passionate about the initiative.

“This project really hit home for me,” said Klube. “On a professional level, I’m a social worker, and I work with a lot of youth in our community who benefit from these types of services.”

Klube and her family started the clambake in honor of her daughter, Ali, who underwent open heart surgery at Golisano Children’s Hospital as a newborn. Five years into the family’s fundraising efforts, Ali’s cousin, Nathan, was also born with a rare heart defect.

In total, the clambake has raised more than $300,000 for the hospital, and this past summer, nearly 1,200 people attended the 16th annual event. In addition to food and family activities, the fundraiser also includes a parade, led by five “guests of honor” — children from the community who have benefited from the services at Golisano Children’s Hospital.

“It is the children and their stories that inspire us to keep fundraising,” said Klube.

“This year, we are grateful for the chance to branch out and to support another vital need at the hospital.”

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Tops Friendly Markets Tops employees and management have truly embraced fundraising for Golisano Children’s Hospital. This year’s fundraising campaign began with the Monte Carlo Night which was held on March 2nd. This event was organized by grateful parent, Eric Czekanski, along with fellow Tops employee and friend, Cheryl Colbert. This marked the 11th year for this event which raised over $11,000, bringing the total since inception to $148,626.

Their support continued on May 29th, with the annual Tops Golf Tournament to benefit Golisano Children’s Hospital.

The event was held at Victor Hills Golf Club and was organized by Tops District Manager, Dan VanAuker. The tournament raised $38,000. Thanks to Dan and all of the sponsors and participants who helped make this happen.

In June, all of the Rochester area Tops got involved through the in-store CMNH balloon campaign. An astounding $29,583 was raised through their two-week promotion, and in October, they held another fundraiser in which more than $21,000 was raised.

We thank all of the staff at Tops for their amazing commitment to helping the children in our region!

Kiwanis The Finger Lakes and Genesee Division Kiwanis have been tremendous supporters of the Children’s Hospital for more than three decades! Throughout the year, they hold several fundraisers to support the Hospital including a Miracle Mile of Donations that both divisions support. They also enlist the support of the Kiwanis members as well as groups from various schools in our community that bring students together to help collect donations at the area malls.

The two fundraising dates brought in almost $7,000, which supports social work. Special thanks to our incredibly supportive Kiwanis groups for their commitment!

Speedway The local Speedways have really gotten behind the fundraising in the Rochester area. Throughout the year, the employees participate in various fundraisers in each location with emphasis on special weekends where they enhance their fundraising efforts. Last year, more than $36,000 was raised through their efforts. This year, Golisano Children’s Hospital was honored to be part of the annual Speedway golf tournament held in Dayton, Ohio. It was a spectacular event, and our miracle child, Iris Helfner and her family were celebrated.

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For the children with autism spectrum disorder and their families, early and accurate detection is key to improving quality of life. University of Rochester neuroscience researchers work tirelessly to better understand the complexities of ASD in the quest to expand and improve interventions and therapies. This relentless Rochester optimism drove the breakthrough discovery of using auditory stimulus to detect signs of ASD in kids as young as age two. And the earlier the detection, the earlier the treatments, the greater the outcomes —for generations to come.

The Rochester Effect.

For treatment ever better.

EverBetter.Rochester.edu

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Tha n k y o u!

We ar e extre m e ly grate ful to o ur co m mu n ity fu ndra is ers. #BestFriendsWedding

Kong Music Therapy Recital

Ali-Gaiters Clam Bake

Lynn’s Crush Cancer - SUNY Brockport

B&L Wholesale Golf Tournament

Martha Brown Kid 2 Kid

Battle of the Bands

Mended Little Hearts

Battle of the Beaks

Military order of the Devil Dogs

Cobbles Cares Basketball Game

Ogden Memorial Presbyterian Church

Cosgrove Cares

Cool as Ice 2019

Craig Demmin 3vs3 Soccer Tournament

Pittsford Crew for Community

Crazy Dog T-Shirts

Roberts Wesleyan College

Crosby’s Fund

Ruby Gordon Holiday Sale

Dans Crafts and Things 45th Anniversary

SUNY Brockport Stick it to Cancer

Fish Fry Family Supper - Mill Landing

Sodus Central School District

Greece Arcadia Junior Honor Society

The Distillery

Girls Got This - Victor Primary School

Wingfest 2019

Goals for Golisano - Webster Thomas

WNY Optics Golf Tournament

Jenny Shaw Friends and Family Kenna’s Fight Gavin Ray Landon Ray Allana Ray Brenna Ray Nora Kubrich Izzy Howlett

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Upcoming Community Events Zoey’s Lovely Heart Club Fourth Annual Tree Farm Fundraiser December 7 and 8, 11 a.m.-8 p.m.

3614 Rush Mendon Road (rt. 251) Mendon, NY Trees: $65-75 Wreaths: $30-50 Come celebrate, sit by the fire and have fun! All profits help preemies and newborns in the NICU. There will be a petting zoo on Saturday from 1-3 p.m. and Santa will be joining in on the fun from 1-3 p.m. on Sunday.

Rainbow Classic December 20 The Palestra at the University of Rochester The heated rivalry between Pittsford Mendon and Pittsford Sutherland makes for great entertainment in support of a great cause! Every penny from admission and commemorative program sales will support the pediatric Palliative Care Program at GCH. Tipoff for the girls’ game is at 6 p.m. followed by the boys’ game at 8 p.m. Ticket sales are $10. For more information and for tickets, call the Pittsford Athletics Office at (585) 267-1062.

Wingfest to Benefit Golisano Children’s Hospital January 25, 1 p.m.-5 p.m.

Nashvilles, 4853 W Henrietta Rd, Henrietta, NY 14467 Get your team ready for a wing eating contest to benefit Golisano Children’s Hospital! Teams must consist of three players each.

There will be an adult wing bar and drink specials, kids’ pizza and ice cream bar, raffles, games and our famous wing eating competition! For more information or to register and submit your team roster, please visit www.golisanowingfest.com/ or email Shane at golisanowingfest@yahoo.com. Individual tickets are also available at the door for food and drink packages.

Golisano Children’s Hospital Advancement Office

585.273.5948 | www.givetokids.urmc.edu

Scott Rasmussen Sr. Assistant Vice President for Advancement Betsy Findlay Director of Advancement, Special Events and Children’s Miracle Network John Belt Advancement Assistant Meghan Barnhardt Associate Director, Community Affairs Adam Giglia Associate Director, Major Gifts Katie Keating Program Assistant Jennifer Paolucci Program Manager, Special Events and Children’s Miracle Network

Public Relations and Communications 585.273.2840

Barbara Ficarra Associate Director, Public Relations and Communications

Scott Hesel Senior Public Relations Associate Jessica O’Leary Public Relations Associate Patricia Cruz-Irving Public Relations Associate Kathleen Mannix Art Direction & Design

Save the Date 2020 Feb. 13-14 February 23 March 28 May 30 August 29 August 31

Golisano Children’s Hospital Radiothon Roberts Wesleyan Basketball Benefit Game Ugly Disco Stroll for Strong Kids Fairport Music Festival Golisano Children’s Hospital Golf Classic

Find us on social media: facebook.com/GolisanoChildrensHospital twitter.com/urmed_gch instagram.com/urmed_gch Golisano Children’s Hospital

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University of Rochester Office of Advancement and Community Affairs 300 East River Road PO Box 278996 Rochester, NY 14627-8996

The Season of Giving Gifts of all sizes, from thousands of people throughout our community and beyond, have helped support Golisano Children’s Hospital. Now, with the construction of the Pediatric Behavioral Health and Wellness Building, the acquisition of new ambulances to help transport patients between hospitals, and other innovative community partnerships, we’re working to ensure that we are proactive in providing the best and most comprehensive care in the region.

So in this season of giving, we ask you to consider a gift to Golisano Children’s Hospital. You will be investing in a brighter future for thousands of children and families.

Golisano Children’s Hospital Office of Advancement 300 East River Road, PO Box 278996 Rochester, NY 14627 Your gift to Golisano Children’s Hospital is tax deductible; make your gift by Dec. 31 in order to claim on your 2019 taxes. If you’re a donor or potential donor and would like to speak with us directly, please feel free to call (585) 273-5948.

To make a donation online go to givetokids.urmc.edu 28

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