Strong Kids | 2021 | Volume 1

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Around this time last year, I expressed hope that someday in the near future, there would be an end to the pandemic and we could gather safely again. Thankfully, it looks like we are potentially at this point with mass vaccination and falling cases in the United States.

While I encourage all of us to raise an in-person toast to our (hopefully) vaccinated family and friends, let’s not celebrate for too long as there is much work to be done. Rochester is still a city of vast inequities and divisions, often only making national news lately for the wrong reasons.

For now, however, we can step back and appreciate the 2021 Miracle Kids. These kids and their families are survivors in multiple ways, and the challenges they faced probably won’t be replicated any time soon. Not only did these children come back from a variety of life-threatening conditions – including cancer, kidney failure, and blunt force trauma – but they also had to navigate these terrifying scenarios during the height of the pandemic, with both restrictions on visitation and the threat of contracting COVID throwing unprecedented obstacles their way. I give a huge thank you to our caregiving teams for helping bring these children to health and as well as keeping families safe from COVID by following the protocols we’ve had in place.

I also want to give thanks to our partners in our one system of children’s health care: namely Rochester General Hospital (RGH). In two of these stories, their early interventions – and collaborations with GCH - were vital for helping to save lives. If we as a health community truly want to bridge long-standing inequities in the Rochester community, this teamwork between the two major health organizations is a necessary and vital step. Now that the virus might be in the rear-view mirror, I hope we can take the lessons we’ve learned to build a brighter future for all and to help every child reach their fullest potential.

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

Golisano Children’s Hospital Board of Directors Mike Goonan, Chair* Daan Braveman Mike Buckley Steve Carl Al Chesonis Jeffery Davis Roger Friedlander Jay Gelb Deborah Haen John Halleran James Hammer Howard Jacobson Todd Levine Scott Marshall Gary Mauro Kim McCluski* Kathy Parrinello, R.N., Ph.D.

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Brian Pasley Dante Pennacchia Ann Pettinella Jenni Ralph* Mark Siewert* Mike Smith* Steven Terrigino Truman Tolefree Donald Tomeny James Vazzana Alan Wood Bruce B. Zicari II

Faculty

Kate Ackerman, M.D. Marjorie Arca, M.D.

Susan Bezek, M.S., R.N., P.N.P. - B.C. Jill Cholette, M.D. Clinton Morrison, M.D. Michael Scharf, M.D.

Honorary Members.

Michael Amalfi Bradford C. Berk, M.D., Ph.D. Mitchell Chess, M.D. Judy Columbus John L. DiMarco II Wanda Edgcomb Harvey Erdle Nick Juskiw Richard E. Kreipe, M.D. Elizabeth R. McAnarney, M.D.*

Thomas McInerny, M.D. Karen Powers, M.D. Gail Riggs, Ph.D. Nancy Robbins Jeffrey Rubenstein, M.D., M.P.H.

Ex-Officio

Kellie Anderson* Patrick Brophy, M.D., MHCDS Steven Goldstein Jennifer Johnson Douglas Phillips R. Scott Rasmussen* JoAnne Ryan Mark Taubman, M.D.

*Executive Committee

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Jacob Cole p. 5 Marquan Henderson p. 9 Jorie Pucillo p. 13 Wyatt Robson p. 17 Oksana Zakharchyshyn p. 21 photos by John Schlia

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Jacob Cole From Failure to Flourish: A Kidney Transplant Brings Hope Jacob Cole is 15. The high school freshman likes Harry Potter, the Buffalo Bills, concerts, fast food and fancy cars, as in Ferraris and Lamborghinis. Though functionally blind from birth and small for his age, Jacob, at one time, was a middle school wrestler.

A local TV station in the Southern Tier - where Jake lives - profiled him in 7th grade. Jake had made a name for himself when he won his first wrestling match despite his blindness, while actively participating in middle school using his braille typewriter and sharp wit. The reporter called him an inspiration.

But by the end of the following summer, Jake started feeling sick. “I just kept getting weaker and weaker. I didn’t want to eat anything, and I started throwing up a lot,” he says.

Jake’s mom, Kathleen Teeter, noticed his diminished energy and the flu-like symptoms and took him to the doctor. A few days later, she noticed his legs wobbled as he was getting in to the car. He didn’t seem to get better. She took Jake to the Emergency Room at a local hospital. As he was attached to IVs and blood drawn from his arm for tests, Kathleen noticed that Jake was turning blue.

It was hard for Kathleen to understand what was happening. She is deaf and communicating in a crisis can challenging. Her father, Robert Cole, M.D., joined her at the hospital. A retired surgeon, Dr. Cole explained to Kathleen that blood tests showed Jake’s kidneys were shutting down and he would be transferred to Rochester for treatment.

A Desperate Condition When they arrived at Strong Hospital’s Emergency Department, a team of physicians, nurses and sign language interpreters met the family at the door. It was then that Kathleen learned just how serious Jake’s situation was. “He was dying in the ambulance,” Kathleen says now, “The doctors told me he had Stage 5 kidney failure.”

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“Jake’s creatinine level was about 20 times what it should have been,” says Maggie Doody, the Pediatric Nephrology Nurse Practitioner at Golisano Children’s Hospital who was part of the team treating Jake in GCH’s Pediatric Intensive Care Unit from the start. “Kidneys are a vital organ, and when things go south, they can go south quickly. He needed immediate hemodialysis treatment.”

“Jake basically had no kidney function when we first saw him,” explains Jake’s doctor, William Varade, MD, pediatric nephrologist at GCH. Doctors inserted a catheter to begin hemodialysis, replacing the natural functioning of his kidneys in filtering waste products from his blood stream. “At first, hemodialysis has to be done slowly to avoid possible seizures,” says Dr. Varade, “It took a couple of days for Jake’s condition to stabilize.”

“I was out of it, but started getting the idea that it was pretty bad,” Jake recalls.

As Jake started to feel better, his family began to understand that Jake would need ongoing dialysis. But to get him out of the hospital and back home, Kathleen needed to learn how to do Jake’s dialysis at home.

For weeks, Kathleen and Jake stayed at the Ronald McDonald House in Rochester.

Kathleen went to school, and, with the help of an interpreter and online courses, she learned how to hook Jake up to a peritoneal dialysis machine, keep his port sterile, and administer his many medications. Jake, meanwhile, went to the hospital for regular dialysis treatment and consistent monitoring.

Finally, Jake and Kathleen could return home. With Kathleen’s help, Jake got his dialysis treatment overnight as he slept. Special monitoring equipment was installed so Kathleen would be alerted to a problem not by the usual audible alarm, but by her bed shaking.

“Dialysis is a life-saving treatment,” says Doody, “but the goal for any patient with end stage kidney disease is a transplant. Transplants are a treatment, not a cure, but provide a much better quality of life, particularly with someone so young.”

“I felt like ‘Robot Jacob.’ I didn’t want to live life attached to a machine,” says Jake. In July 2020, he was put on a transplant list.

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Brotherly Love Young, healthy kidneys from deceased donors are rare. Rather than wait, Kathleen and Jake began looking for a potential living donor.

They didn’t have to look far.

Jake’s older half-brother, Shawan Teeter, 23, offered to get tested to see if he was a match for Jake. He was. The transplant team at Strong put Shawan through a variety of additional tests to make sure he himself was healthy enough to donate one of his kidneys.

All systems were go, but the pandemic made scheduling surgery difficult. Finally, on January 12, 2021, a year and four months after Jake’s kidneys failed, he and Shawan came back to Rochester for the transplant surgeries.

Transplant surgeon Randeep Kashyap, M.D., M.P.H., and his team worked in adjoining operating rooms to remove the kidney from Shawan, and immediately transplant it into Jake.

“It happens so quickly that the kidney, once it’s attached, it begins working almost immediately,” says Dr. Varade.

“I don’t remember much,” says Jake, “I hurt afterwards for a week. Shawan said he hurt for two weeks.”

After the transplant, “It was amazing to watch Jake’s lab results normalize, and his creatinine level continues to decrease,” says pediatric nephrologist Hannah Brummer, M.D. As Jake’s health improves, the pediatric nephrology team tried to figure out why Jake got so sick. Genetic tests revealed that Jake has Senior-Loken Syndrome, a congenital disorder that mainly affects the eyes and kidneys beginning in early childhood, and gets progressively worse into adolescence.

“Jake’s kidney disease may have been progressing silently for a while, but the symptoms wouldn’t necessarily be obvious,” explains Brummer. “Unfortunately, kids in Jake’s situation present at the hospital in an advanced stage.”

drug companies and pharmacies to provide his medications with instructions in braille.

“Jake’s condition is very stable now,” says Doody, “He feels well and looks good. And he is growing!”

He is meeting soon with Alex Levin, M.D., M.H.Sc., chief of UR Medicine’s Flaum Eye Institute and an optho-geneticist, to see if there is any way to improve his eyesight.

Like so many kids his age this year, COVID has kept Jake home, where he logs in to his online classes and tries to keep up with his homework.

As a transplant recipient, he takes medication to suppress immune responses to his new kidney, complicating a return to in-person school.

This time next year, Jake hopes to be back in school or maybe on a beach vacation with his family, to cheer on the Bills in person or dance at a concert.

“Shawan knows he saved his brother’s life and they have become so close,” says Kathleen, “It’s all a miracle.”

“ I felt like ‘robot Jacob.’ I didn’t want to live life attached to a machine”

A teenager again Jake comes back to GCH regularly for check-ups and additional testing. He is working toward managing his many medications on his own.

There are still challenges: GCH’s nephrology social work team are helping with everything from transportation to appointments to badgering

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Marquan Henderson How a Multidisciplinary Team, Quick Thinking, and a Little Bit of Faith Encouraged a Miraculous and Complete Recovery.

In the Intensive Care Unit (ICU), Lucille stood at the bedside of her son, Marquan. She was looking at a shell of what she knew him to be...a gregarious, loving young boy. At 13 years old, the second-youngest of his five siblings, he holds the household together, and lights up every room he walks into.

The boy in the ICU bed was a far stretch from that description. “The whole time we were there, he just kept saying, ‘don’t worry mommy, God has me,’ said Lucille, “That’s all he would say.”

A Negative COVID Test with Severe Symptoms The COVID-19 pandemic flipped everyone’s life upside down, and the Henderson family was no exception. Living at home with his siblings and mother, Marquan isolated as Lucille did everything she could to ensure her family’s safety. “We saw no one. He didn’t go to school, school was virtual for all of his siblings.”

On January 17, 2021, Marquan complained that his head hurt. Then the back of his neck. Over the next two days, his temperature rose. With the fear of COVID on her mind, Lucille decided it was time to take him to the hospital. On January 20, he was admitted to Rochester General Hospital where he tested negative for COVID. Doctors ran a multitude of tests, including a CAT scan. Marquan showed some swelling around his lymph nodes, which led to concerns of infection. Doctors began to think Marquan was suffering from Kawasaki disease. Kawasaki disease is the most common cause of acquired heart disease in children in developed countries, and has been, in some cases, tied to previous COVID-19 infections in children.

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When Marquan’s condition didn’t improve and his fever spiked to 105 degrees, he was transferred to Golisano Children’s Hospital (GCH) on January 23. Doctors at GCH entertained the idea of a Kawasaki disease diagnosis, but felt that he was a little too old to have developed the condition. Pretty quickly after being admitted, however, he developed signs of shock: high heart rate and low blood pressure. “The Pediatric Hospitalists team jumped on this and we immediately involved our Cardiac ICU team to monitor him. He stabilized after that,” said Marquan’s doctor, Joseph Kuebler, M.D., M.B.A., assistant professor in the Department of Pediatrics, Critical Care.

Kuebler gathered a multidisciplinary team who administered steroids, antibiotics, blood pressure medication and intravenous immunoglobulin (IVIG). IVIG is used to treat various autoimmune and inflammatory diseases. Obtained by pooling antibodies from the plasma of healthy donors, IVIG stops the body’s immune system from attacking itself and decreases inflammation.

Despite their efforts, Marquan was still showing persistent signs of shock. Doctors, along with the infectious disease team, diagnosed him with post-COVID Multisystem Inflammatory Syndrome (MIS-C).

MIS-C typically occurs 2-6 weeks after COVID symptom onset.

While Marquan tested negative for COVID via a viral PCR test, he did test

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positive for COVID antibodies, which is a common trend with a MIS-C diagnosis. Approximately 60 percent of patients test positive for antibodies while testing negative for COVID, while only 30-35 percent of these patients are positive for both.

Meanwhile, Marquan’s condition continued to worsen. He began experiencing heart failure, and on January 24, he was intubated and placed on life support.

Faith Over Fear “I panicked,” said Lucille. “When the doctors told me that my son could die and that I needed to be with my family so that they could comfort me, I just panicked.”

Due to COVID restrictions, no one else was allowed in Marquan’s room. Lucille sat alone, fearing the worst for her son. “As a mother, sitting by yourself seeing your child in pain is very, very hard.”

Marquan’s doctors reassured his mother that they were doing everything they could. “His doctors were so incredibly open and honest with me.” Lucille reminisces of a moment she holds dear, when one of his nurses locked eyes with her and said, “look at all of these doctors with Marquan,” gesturing to his team at his bedside. “We are doing everything we can, you just need to continue to be strong.”

That one moment gave Lucille faith.

With the infectious disease team involved, doctors continued to use steroids until the next day. When the morning arrived, and Marquan had yet to improve, they decided—in an attempt to think outside the box—to consult with the rheumatology team for additional therapies.

Turning the Corner, Full Speed Ahead On January 26, the rheumatologists recommended they start using Anakinra to treat the MIS-C diagnosis. Anakinra is an FDA-approved biologic drug that helps decrease inflammation. Man-made through genetic engineering, Anakinra mimics a protein that already occurs naturally in the body.

Within the day, Marquan drastically improved. Both his blood work and vitals stabilized. On January 27, he was taken off of sedation and intubation.

“Quickly after treatment from Anakinra, he was back to his happy-go-lucky self,” said Kuebler.

“I’m sure it was a combination of his therapies, but we believe that the Anakinra treatment pushed him over the edge in the best way possible.”

When Marquan woke up on January 27, the first thing he said was, “See, Mommy? I told you God has me,” immediately followed by his need to get on his Zoom classes. Then, he requested to go golfing with his uncle.

The doctors couldn’t believe just how quickly he turned the corner.

“They would come in and cheer with him.

Every day they would ask him how he felt and every day he would say he felt great,” said Lucille.

rare, which is great. Less than 25 children over the course of the pandemic have been diagnosed with MIS-C at GCH,” stated Kuebler.

A MIS-C working group was formed at GCH during the Summer of 2019. Led

by Lauren Solan, M.D., M.Ed. in pediatric hospital medicine, the group includes representatives from cardiology, critical care, emergency medicine, infectious disease, hematology and rheumatology. It has been instrumental in establishing the clinical practice recommendations for these patients.

“This group is vital for raising awareness of this rare condition,” Kuebler said. “For Marquan’s case, we put in hours and hours of preparation.

Again, it’s all about teamwork; being sure we choose the right therapies, the appropriate follow up, etc.”

Marquan made a miraculous and complete recovery. If you were to look at his echocardiogram, or an ultrasound of his heart, there would be no signs of his body ever being under such stress.

“Strong Memorial Hospital and Golisano Children’s Hospital saved my son’s life,” said Lucille.

“ God made it so that I had to go through this to be able to help other families.”

Finally on the Mend With each day, Marquan continued to get better.

While his experience wasn’t pleasant, he told his doctors that he wanted them to use everything they learned from him to help care for other children. “God made it so that I had to go through this to be able to help other families,” he said.

Marquan remained on blood pressure medicine until January 30. He was discharged on February 5, and he finished his last round of steroids on February 14.

“MIS-C is a very scary diagnosis, but it does respond to therapy. This diagnosis is relatively

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Jorie Pucillo Toddler with Down Syndrome Smiles through Heart Surgery, Chemotherapy It started as a small, red blotch on her cheek.

What would normally be a minor nuisance for most kids was a foreboding sign for young Jorie Pucillo.

It was the first indication that her blood platelet levels weren’t normal.

Doctors had been monitoring Jorie’s platelet levels from birth. As a newborn with Down syndrome, higher levels could mean that she’d become one of the many babies who develop acute lymphocytic leukemia. Babies with Down syndrome are 200 times more likely than other children to develop symptoms of leukemia, typically within the first five years of life.

But the blotch came as a birthday surprise no one wanted for the two-year-old.

Within the span of two days, the red mark grew down her cheek and to the back of her neck. Her face swelled, and she could barely open her eye. When her parents brought her to a hospital in Buffalo, doctors routed her to Golisano Children’s Hospital (GCH) right away. Anxious father Jerry Pucillo followed directly behind the ambulance.

The verdict? A bad case of cellulitis. With some antibiotics and a 10-day hospital stay, Jorie and her father were able to go home. But the red blotch signaled something both parents and doctors had known from the start: the threat of cancer was becoming real.

Start with the Heart The potential cancer wasn’t the first challenge Jorie had faced in her life thus far, and the first hurdle had come shortly after her mother, Shauna, and father had learned they were expecting twins. While the twins were a welcome surprise, it also meant more testing than the average pregnancy. While her twin brother, Julian, was developing fine, during one of several ultrasounds, doctors discovered an atrioventricular canal defect in the baby that would inevitably grow to become Jorie. If the defect grew bigger, the surgery was likely unavoidable.

Doctors also explained to Shauna and Jerry that many babies with this type of heart condition are born with Down syndrome.

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“Ninety percent of kids with Down syndrome have this heart defect,” Jerry said.

“Me and my wife are special education teachers so that didn’t even matter to us – we were so worried about the heart. We knew about Golisano, since I was born at Strong, and we knew it was a good hospital.”

Jorie was born on March 21, 2018, in Buffalo, serendipitously on World Down Syndrome Day. She was a little blue compared to her brother, since her heart was working so much harder to pump blood throughout her system. After a stay in the NICU, they supplemented Jorie’s formula with extra calories to make up for the ones her body was burning through due to her heart problem.

At six months old, Jorie had open heart surgery at Strong with George Alfieris, M.D. Her parents were understandably worried, but were put at ease by Alfieris’s calming words.

“He came in and he was like, ‘I’m going to treat her like my own daughter. I’ve done this surgery as many times as you’ve brushed your teeth,’” Jerry said. “It made us feel a lot better.”

The surgery went off without a hitch and,

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while Jorie still has a slight heart murmur, there’s little concern over that becoming an issue in the future.

However, during her recovery, she experienced a cold and pulmonary hypertension.

Although the cold went away, the hypertension persisted. Jorie’s care team, which included oncologist Craig Mullen, M.D., Ph.D., monitored her blood counts, which had been atypical since the day she was born. And then came the red blotch on her face. Together, these signs suggested the early stages of myelodysplasia (MDS), a condition that could eventually grow into acute lymphocytic leukemia.

“We knew she might develop leukemia this whole time,” Jerry said. “We said, ‘it’s a year and a half later, let’s go talk to Mullen about the cancer.’”

Treating the Cancer As Jorie’s oncologist, Mullen was well acquainted with her case. He had been monitoring her blood counts and bone marrow biopsies since she was around a year old.

“Leukemia typically appears in the first five years out of the blue, but it can also occur at birth when abnormal blood counts suggest something is going on,” Mullen said. “This is what happened in Jorie’s case.”

Jorie was put on a chemotherapy regimen to help stop MDS in its tracks. In conjunction with the Children’s Oncology Group – the largest North American childhood cancer organization – Mullen enrolled Jorie in a study that focused on leukemia and Down syndrome.

Children with Down syndrome either have a good experience or a bad experience with chemotherapy, Mullen explained. When the right dose is struck, they respond very well to treatment. When the right dose isn’t found quickly, however, it can be especially difficult for the child to handle.

“Toxicity pushes down healthy blood counts. While we’re whacking the bad blood, we’re also whacking the healthy blood,” Mullen said. “There’s a big risk of severe, overwhelming infection. We can’t infuse infection-fighting cells.

We can’t give another cycle of chemo until the

red blood cell count returns to healthy levels.”

In Jorie’s case, the first cycle of her chemotherapy regimen stuck. This meant they could continue with less-intense chemotherapy options instead of upping the dose. Mullen decided on a standard regimen: administering six cycles of chemo over an eight-month period.

These cycles consisted of five to seven days of chemotherapy followed by a stay in the hospital. This ensured that the doctors were able to monitor Jorie for complications. But it wasn’t only medically demanding; it was also socially demanding.

Jorie was brought to GCH for her cancer treatment at the start of the COVID pandemic.

That meant her parents would have to stay with her in the hospital for weeks at a time out of fear of catching or spreading the virus.

“It was crazy because that’s when things started locking down for COVID,” Jerry said.

“I was in there for 30 days straight – I couldn’t leave her.”

COVID posed an enormous challenge to the family, but it was also difficult being away from each other for so long.

“I barely saw my wife, but we had to do what we had to do,” Jerry said. “Being separated for so long was the hard part. I missed the boys (Julian, and Jorie’s older brother, Anthony) so much. It was rough.”

Luckily, Jerry’s parents live in Rochester, making it easier to navigate home and family life.

Jerry and Shauna took turns with Jorie so that he was able to see the boys on the weekends. When he stayed with Jorie throughout the week, he was able to work remotely from the hospital room.

Their efforts were rewarded: overall, Jorie did well on chemotherapy. Besides a couple of skin reactions, Jorie stayed cheerful and smiling more often than not, even through the many platelet transfusions she needed to support her health.

Recovery and Remission On March 29, 2021, Jorie came back to GCH for a bone marrow biopsy. The test would reveal if her cancer was reacting to the treatment and whether or not they would need to continue chemo in the future. The result?

Jorie’s cancer is officially in remission.

“Since completing chemo, things are going well,” Mullen explained. “She’s remaining

in remission. We’re keeping our eyes open for relapse, where the greatest risk is in the first couple of years. Now, she’s doing all the things she does as a three-year-old. Interacts with family, schooling […] she’s a delightful little kid, and I’m hoping for the best in the future.”

It’s the hard work of her loving parents, the outstanding compassion of the doctors, nurses and staff at GCH and Jorie’s own optimism that has enabled her to come this far. Even when she was struggling in the hospital, Jorie still greeted each day with a smile. Whenever the care team came into the room to assess her health, Jorie adopted the habit of giving every single on of them a fist bump.

“Jorie was always cheerful and playful and interactive,” Mullen said. “There’s something special about people with Down syndrome.

They have a sunny disposition and live in the here and now. Kids with Down syndrome are God’s reminder that the day is good.”

Looking back on the experience, Jerry admits it was hard to go through, but he realizes how lucky they are.

“Other families have it so much worse,” he said. “I ran into someone I knew and her daughter is going through a different type of leukemia.

When you see other families and put things into perspective? There are kids who don’t make it. It’s hard to wrap your head around.”

Jerry is thankful for all the hard work performed by the hospital, so much so that he wanted to give back.

“The whole experience has shined light on how people care,” Jerry said. “The nurses and staff – everyone involved loved my daughter. You don’t expect that. Even the residents, the music therapy team, the people that came to clean my rooms – they were all amazing.”

During Jorie’s treatment, Jerry started a fundraising campaign selling t-shirts in Jorie’s honor. He designed a logo infusing the various aspects of Jorie’s health journey: there’s a golden ribbon for her childhood leukemia, a heart for her heart surgery, and three arrows for her Down syndrome. The campaign was wildly successful and the family has raised more than $12,000 for GCH to date.

“It was awesome to have that support,” he said. “It kind of gave a sense of belonging when you’re living out of a suitcase and sleeping on a

cot. That’s why I wanted to raise that money and do what I could to help them.”

Jorie will continue to get routine biopsies to ensure that her cancer remains in remission.

While the journey seemed long at the time, Jerry recognizes how far they’ve come.

“There were bad days,” Jerry said. “But most of the time? She was happy. I got inspiration from my daughter who’s two and who’s so strong and resilient that nothing brought her down.”

“ The whole experience has shined light on how people care,” Jerry said. “The nurses and staff – everyone involved loved my daughter.”

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Wyatt Robson A Last Ditch Treatment Saves Newborn with Rare Disease

For Sarah Robson, the hardest and best moments of her son Wyatt’s 422-day hospitalization came within minutes of each other as the fourweek-old’s health failed one night in 2018.

First, the hardest. Wyatt’s care team was gentle but clear: If anyone hadn’t met Wyatt yet, now was the time. He might not survive the night.

Then, the best. Derek Wakeman, M.D., assistant professor of Surgery and Pediatrics, had one more idea—a long shot, but a chance. The hope that had sustained the family surged again. With the support of Wyatt’s care team, they decided to try.

“The level of expertise in that hospital is incredible,” Robson said. “You hear about Golisano, but the experience of actually being there is something entirely different. The nurses, the doctors and everyone working on the floors are second to none. Every medical decision they made, they made as a team, and they included the family.”

Choosing Hope Today, Wyatt is a ball of energy who recently took his first trip to the zoo. Major health challenges remain, but by simply living he defied the odds. He was born with a condition called CDH, and his case was so severe that he had less than a one in four chance of survival.

Robson, her significant other Jeff, her teenage son Noah, and her mother first heard the term CDH after Wyatt’s 20-week ultrasound. It stands for Congenital Diaphragmatic Hernia, and it occurs when the diaphragm doesn’t close properly. As a result, organs like the intestines and liver move into the chest, putting pressure on the heart and lungs, which no longer have room to develop well, explained Kristin Scheible, M.D., associate professor of Pediatrics, who helped care for Wyatt.

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“These babies can get into dire straits very quickly at birth,” she said.

Noah had come to the ultrasound so he could plan a gender reveal party for the family back home in Geneva. But instead of celebrating, they found themselves with emotional decisions to make.

“We said ‘we have two choices: We can feel sorry for ourselves, or we can have hope that everything is going to work out as it’s supposed to,’” Robson said. “We chose to have hope.”

After touring the NICU at Golisano, she and her family decided to remain in Rochester rather than seek treatment elsewhere.

“I knew this was exactly where I needed to be,” Robson said. “They were going to give us that hope we needed. They were going to do everything they could do for Wyatt.”

No one went into that process with any illusions.

Along with CDH, Wyatt had several chromosomal abnormalities. The road ahead would be hard.

“I can’t overemphasize the intensity of the treatment that Wyatt required,” Scheible said. “He and his family were pioneers in saying ‘yes, let’s try it.’ Some families might push for treatment without a realistic sense of the odds, but this family had their eyes wide open.”

Robson was in an out of the hospital several times. The team at Golisano encouraged her to focus only on the next week, and making it through that. With their support, she made it to 39 weeks gestation.

The Mayor of the NICU Wyatt arrived on June 4, 2018, and his first days were as challenging as expected. Like many CDH babies, he initially did well on a ventilator but then needed the additional support provided

by ECMO, which is essentially a heart/lung bypass machine.

By day 19, Wyatt had stabilized enough for surgeons to repair his hernia and move his organs back into their correct locations in his abdomen.

Wyatt wasn’t yet big enough for surgeons to close the incision over them, so he was left with what’s called a silo—effectively, a patch over the still-open surgical site—and taken off of ECMO. Wyatt did well for about a week. And then came what Robson remembers as the hardest and best night as Wyatt slipped into heart and 18

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respiratory failure. Wakeman’s last-ditch solution was a type of ECMO not typically done at Golisano. Standard ECMO uses a vein and an artery. Wakeman proposed a type of ECMO that uses only veins. To make it work, he had to re-access a tied-off vein from the earlier ECMO much closer to the heart.

“Dr. Wakeman said he wasn’t ready to give up,” Robson recalled. “If someone was willing to give us any hope, we were ready to jump on it.

But he was very clear that he couldn’t promise anything—he said he had done the procedure three times, and two patients had ended up surviving.”

Happily, Wyatt became patient number three. Although he coded several times, he gradually improved and was able to go off ECMO and back to standard ventilation after three weeks. On Aug. 31, doctors were at last able to close his abdominal wall.

Wyatt’s care team next focused on other issues caused by his condition—pulmonary hypertension, unstable stress hormones, problems with his digestive system and more.

Many times, Scheible and other members of the team would try something new and commit to remaining at his bedside for the following 24-36 hours to see if it worked.

“We approached it all with an open mind,” Scheible said. “We knew we were trying everything we could: We weren’t going to leave anything on the table.”

His care involved nutritionists, respiratory therapists, occupational therapists, musical therapists, hematologists, cardiologists, the palliative care team, anesthesiologists and more.

Scheible credits that team approach—the kind of collaborative care that can only happen at a place like Golisano—for the successful outcome.

Wyatt ultimately spent six months in NICU, long enough for him to be nicknamed the mayor and to don an appropriate costume for Halloween. When he moved to PICU, they joked they’d have to upgrade his title to governor.

His family decorated his rooms and at times practically moved into the hospital.

“His family was so amazing and patient and optimistic,” Scheible said. “When he was finally able to go home, we all felt like his family was our family. I have rarely been so confident that a baby this medically fragile was going to thrive at home.”

Going Home, Growing Strong Scheible’s intuition was correct.

“He loves being home,” Robson said. “He’s the happiest baby I’ve ever seen. He loves being outside, loves riding in his Daddy’s tractors—he just really enjoys life. He’s a little spitfire—that’s what got him through.”

It has been a year since the family had to take an unplanned trip to the hospital. Wyatt has started eating—something no one was sure he’d be able to do. Robson still texts his care team at Golisano with regular updates.

“He has a long way to grow and has challenges ahead, but he has an amazing medical team and amazing parents behind him,” Scheible said. “He has the best chance possible for any baby in his situation. When you see how far he has come, it just gives me hope that he is going to progress and achieve his full potential.”

Robson believes that, too. And she and her family would do it all over again.

“Good things come from bad situations, and Wyatt is proof of that,” she said. “CDH is now just part of who Wyatt is. It’s part of our family.”

“ We approached it all with an open mind,” Scheible said. “We knew we were trying severything we could: We weren’t going to leave anything on the table.”

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Miracle Kid 20

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Oksana Zakharchyshyn Persevering through Loss: Family Support and Skilled Care helps Teen Fully Recover from Tragedy

On June 20, shortly after 8 p.m, Nelya Leskiv got the kind of news no one ever wants to get: several members of her extended family had been walking on the shoulder of Empire Boulevard toward to the Abbotts’ Custard shop in Webster, NY, when a distracted driver collided into them.

“It wasn’t clear who was in the hospital or how bad the injuries were,” said Nelya.

On the date of the Summer Solstice, Nelya was faced with a long, chaotic night.

She found out four of her family members had been injured, and transported to both University of Rochester Medical Center and Rochester General Hospital. But since her extended family spoke limited English (they had emigrated from Western Ukraine just five months earlier), it was difficult for caregivers to identify them immediately. In addition, COVID visiting restrictions meant that she couldn’t freely enter either hospital.

Nelya scrambled from hospital to hospital until - slowly - details began to emerge. Nelya’s cousin, Mariana Zakharchyshyn – who had been admitted at Strong Memorial Hospital along with her threeyear-old son Maksym Tsybrii – had not suffered serious injuries. Mariana had been able to write down her name.

Tragically, however, Oksana Zakharchyshyn, Mariana’s mother and Nelya’s aunt, had died from her injuries.

Nelya also found out that Mariana’s 16-year old sister, Oleksandra Zakcharchyshyn, was fighting for her life at Rochester General Hospital (RGH).

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Getting Through the Worst Nelya’s young cousin, Oleksandra, had been admitted to RGH without identification, credit cards, or a phone. She was entered in the system as “unknown.” Caregivers didn’t have time to figure who she was, however, as she needed immediate surgery. The artery behind one of her knees was completely ruptured, and she was at risk of either losing her leg or bleeding to death. It took surgeons six hours to reconstruct the artery and create a graft to repair the vein.

During surgery, RGH caregivers were able to confirm Oleksandra’s identify her through her type 1 diabetes condition.

“They saved her life over there,” said Jake Deines, M.D. associate professor in the Division of Pediatric Critical Care at GCH. Once she had figured out what happened, Nelya picked up Oleksandra’s dad, Ihor – in shock from the loss of his wife, Oksana – and brought him to visit his daughter.

They arrived to find her in rough shape even with the successful surgery. “I wasn’t expecting her to see her in such a bad condition. For the first 3 or 4 days, she wasn’t able to move anything at all,” said Nelya.

Oleksandra was transferred to GCH Pediatric Intensive Care Unit (PICU) for her recovery. Deines, along with team of colleagues, worked to coordinate her care.

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“She had a lot of broken bones, from hip to ribs to neck, and she needed anti-coagulation drugs and constant administration of pain medicine and sedatives,” said Deines.

To make matters worse, on the second night at GCH, Oleksandra began bleeding internally from an unknown source. Imaging revealed that she had a hematoma spinal area that had to be drained to avoid neurological damage.

The totality of her conditions - broken bones, internal bleeding, and neurological damage - required multi-disciplinary collaboration for her recovery. Orthopedic surgery was needed to repair her broken bones.

Vascular surgery was required to graft veins that were injured, and the neuro-surgery team worked to stabilize her spine.

While teams were maneuvering to facilitate Oleksandra’s long road to recovery, Nelya remained a constant presence – along with Ihor – to help advocate for her cousin’s care. Through those initial weeks in the PICU, however, they had made the decision not to tell Oleksandra about her mother’s death because she was not in a physical condition to even understand the news, much less process it psychologically.

About two-and-a-half weeks later, following several successful surgeries, Oleksandra was able to be transferred out of the PICU and onto the 8th floor general ward for further healing

and pain control. At this point, Nelya and Ihor decided to break the news about her mother.

“There was basically no emotions. She listened, but didn’t respond,” said Nelya, “the psychologist said that she was in so much physical pain, she had to shut the emotional pain off to fight for her life.”

Moving Forward – Physically and Psychologically After getting through the worst of her injuries, Oleksandra still face a difficult path to full recovery.

Douglas Fetkenhour, M.D. associate professor of clinical medicine & rehabilitation, lead Oleksandra’s rehabilitation and physical therapy efforts after she was transferred out of the PICU. The most critical challenge was determining if she could walk again. Due to the spinal injury, her legs were weak, and she would have to start from square one.

Fortunately, Fetkenhour knew from experience that her type of spinal injury would allow for some recovery of motor skills. “There isn’t much that can be done from a medication, procedure or rehab perspective that accelerates true neurologic recovery,” he said. “We expect people to get stronger, but it’s a slow, long road, and that’s why we make sure to help patients learn the basic things that they can do on a given day,” he said.

Oleksandra began her recovery literally one-inch-at-a-time, starting by working on rolling over in bed or getting to the edge of the bed. The process took its mental toll; the first time the rehab team tried to move her out of the bed, she had a panic attack, and the physical pain from her injuries made each movement extremely difficult.

As the days progressed, however, Oleksandra - strengthened by the support of Nelya and her father– started to gain her strength back.

“She found a way through the tears and the pain,” said Nelya, “She realized that she had to do it because if you lose time you cannot recover.

When she made progress she was so happy and encouraged.”

Fetkenhour credits Oleksandra’s support system for facilitating a faster-then-expected recovery, as well as her inner-strength in recovering from the immediate tragedy. “We

were anticipating a timeframe from weeks to months, but she was showing a recovery from days to weeks. Over time, we were able to find new things to work on. A big part of her progress was due to the support of her family and the disciplinary team. She showed an incredible amount of resilience from an emotional perspective” After six weeks, Oleksandra was able to walk with assistance. While she would need to utilize a wheelchair and walker for a while, she reached the point where could perform basic daily tasks with a minimum of help. She was discharged from the hospital soon afterward.

“Her father and cousin were huge advocates for her, and when it became time for her to be discharged, they called the nurses together to gauge what progress had been made and what the next steps were and how they could help,” said Amy Keller, a nurse manager on the 8th floor.

Recovery – and a Model for the Future Bolstered by the support of her family, Oleksandra has now recovered to the point where she can walk on her own. She spends her current days getting remote instruction from Webster High School with additional assistance from an ESL tutor to work on her English.

Nearly a year afterward, she is settling into the kind of American life she imagined when her family emigrated from America.

Considering the scope of her case, her recovery is remarkable, according to Deines.

“There were so many services and specialties involved in treating her that we’re developing an innovative new communications tool in the ICU for complex trauma patients,” he said.

Through all of it: the chaos in the immediate aftermath, the surgeries, the pain, and duel challenges of overcoming the death of

her mother and physically recovering from her injuries, Oleksandra pulled through.

“Physically, it was very hard, I was scared,” said Oleksandra, “but it helped a lot that I had support my family.”

“ She found a way through the tears and the pain”

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GCH Welcomes four new board members” Daan Braveman When Elizabeth R McAnerney, M.D., professor and much-beloved chair emerita of the Department of Pediatrics at URMC, asked Daan Braveman to join the GCH board, there was only response Braveman could give: “You can’t say no Lissa.”

While Braveman had not been previously involved with the hospital, his decades of his experience in both academia and serving as an advocate for inclusion and community service will help bolster GCH’s progress toward its strategic goals. In addition, he brings leadership expertise gathered from serving 15 years as President of Nazareth College – the longest standing tenure of any president of the school’s history.

A graduate of the University of Rochester in 1969, and the University of Pennsylvania School of Law in 1972, Braveman carved a distinguished career path focused on civil rights law. He worked as a law clerk to Justice Samuel J. Roberts of the Pennsylvania Supreme Court and then worked as an attorney for the Greater Upstate Law Project in Rochester. During his tenure at Project, he was engage in civil rights litigation throughout New York State. Braveman joined the faculty at Syracuse University College of

Law in 1977, and served as Dean from 1994-2002.

Under Braveman’s leadership of Nazareth, the institution achieved major growth in academic reputation, enrollment, academic programs, campus size, and endowment under an eight-year strategic plan that was implemented from 2012-2020. The institution also raised $49 million during a record-breaking capital campaign.

Once the pandemic subsides, Braveman hopes to tour GCH for the first time. In the meantime, he’s been learning about the hospital’s operations and strategic direction through virtual monthly board meetings.

“There’s always a presentation by doctors and staff members, I’ve been impressed by the quality, and the people I’ve met thus far are extraordinary.”

Steve Carl For new GCH board member Steve Carl, the connection with the hospital is personal. Two of his four sons, Jack (now 19), and Teddy (now 10), received post-natal pediatric care at the hospital after they were born.

“I remember walking into the NICU when Jack was born and seeing the care all the incredibly small babies were receiving from the doctors and nurses. It left an indelible impression,” he said.

Since those early days, Carl has been heavily involved with GCH. He’s supported the GCH Miracle Network through Dairy Queen Miracle Treat Day (Carl co-owns franchises in Rochester, Buffalo, Syracuse and Albany) - in which Dairy Queen donates 1 dollar to GCH for every Blizzard sold.

Thus far, Miracle Treat Day has raised more than $142,000 for the hospital.

In addition, he’s played a key role for two major capital campaigns for the hospital – the construction of the GCH facility in 2015 and the opening of the Golisano Behavioral Health and Wellness Center in 2020.

In 2016, Carl and his Dairy Queen business partner, Mark Goldberg, received the annual Miracle Maker award from the hospital, and the 8th floor waiting room in GCH is named after both of them due to their contributions.

In addition to his ownership of Dairy Queen franchises, Carl is the Co-Founder and Chief Executive Officer of High Probability Advisors, a federally registered investment advisory firm. Previously, he was a practicing attorney for several years, before becoming the chief operating officer 24

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and president at Clover Capital Management from 2000-2014.

Carl is also active in several not-for-profit organizations and serves on several boards of for-profit companies. He is a member of the Rochester Philanthropy Council for the University of Rochester, active member of Young Presidents’ Organization (YPO) and Board Member of YPO Northeast U.S. Region Executive Board.

Carl credits GCH board member Mike Goonan for recruiting him, and he looks forward to helping execute the vision that both Goonan and Dr. Brophy have laid out for the hospital.

“Dr. Brophy and Mike Goonan are the experts on what the hospital needs, they set the initiative, and we’ll work toward advancing the institution, not just in Rochester, but in the region and beyond.”

Carl continues, “I’m amazed on how galvanized the whole Board is to accomplish ambitious goals.”

Mike Buckley Mike Buckley is no stranger to Golisano Children’s Hospital and the University of Rochester Medical Center. A 30-year member and former board chair at Highland Hospital, he is past chair of the Highland Hospital Foundation and a long-time member of the URMC Board. In the process of serving in these positions and learning about the various components of URMC, he became interested in GCH. In addition, the combined leadership of Scott Rasmussen, director of advancement, and Patrick Brophy, M.D., chair of the Department of Pediatrics, spurred him to join the board.

“With their vision and energy, it was a no brainer.”

Buckley has more than five decades of experience as a lawyer concentrating his practice on complex estate planning, business succession and estate and trust administration. He currently works for Boylan Code in the firm’s Trusts & Estates group, and prior to joining Boylan, Mike was a partner at Harter Secrest & Emery LLP. Buckley’s long record of success in estate planning has culminated in several awards, including the Albert Nelson Marquis Lifetime Achievement Award as a leader in the legal profession, and he was named Rochester’s Lawyer of the Year in 2014 by The Best Lawyers in America in Trusts and Estates.

Buckley has also been recognized through his service to URMC as a whole. In 2014 he received the John N. Wilder Award, which honors an individual, family, association, corporation or foundation whose commitment to build a greater University of Rochester inspires others in the tradition of philanthropist John N. Wilder, a University founder and first president of its Board of Trustees.

Buckley hopes to leverage his time as a board member at GCH to expand the reach of the hospital into the community, and help disseminate the knowledge of the hospital through relevant community partnerships.

“We as a society make it a point to give people a second chance. The more important factor is to give people a first chance, and that’s what makes the hospital a motivating force.

Truman Tolefree Truman Tolefree and his wife, Erin, are longtime supporters of the Ronald McDonald Charities of Rochester, an organization that provides lodging and emotional support for families receiving heath care in the city.

So when Truman was approached by GCH board member Michael Smith about joining the board for the hospital, it was an easy decision.

“Becoming more directly involved with GCH feels like a natural extension of the charitable causes that we support - early childhood education, youth education, and health,” said Tolefree.

Tolefree brings years of business expertise to the board. He is the Founder and Managing Principal of Intersection Realty Group (“IRG”), a private commercial real estate investment firm focused on the acquisition and management of value-add industrial and multifamily assets located in liquid secondary and tertiary markets across the US. Prior to IRG, Truman was a Principal and the Director of Acquisitions & Dispositions for Morgan Communities, a national owner and operator of institutional quality multifamily apartment communities, headquartered in Pittsford, NY. During his tenure at Morgan, Truman was directly responsible for the acquisition of over 10,200 apartment units totaling more than $1.2 billion in market value and the disposition of approximately 23,600 units valued more than $2.4 billion in market value.

Tolefree envisions leveraging this track record to help the GCH advancement department meet its goals: “I would like to work with the board and advancement team to increase the philanthropic support for the hospital by being an ambassador within the business community.”

In addition, Tolefree plans to focus on promoting the hospital’s community outreach efforts and initiatives to improve equity.

“I would like to be an advocate for underrepresented minority communities in the Rochester area to ensure that the hospital’s full range of services are both visible and fully accessible to all demographic segments of the community in which the hospital operates.”

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A SPECIAL

TO O U R CH I L D R EN ’ S M I R ACL E N E T W O R K PA R T N ER S FOR THEIR SUPPORT

Monte Carlo Night

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to benefit Golisano Children’s Hospital Special thanks to everyone who made this year’s Radiothon a great success — Over $295,000 was raised in 2021!!! This year marked the 20th anniversary of the Cares for Kids Radiothon during which an incredible $3.8 million was raised to support Golisano Children’s Hospital!!! We are extremely grateful to our radio partners – Mix 100.5 and WHAM 1180 along with our television partner, 13WHAM, and also to our sponsors and our incredibly generous community for supporting our efforts and helping us raise much needed funds for the children’s hospital.

Special Thanks to our Radiothon Sponsors Top Friendly Markets AAC Contracting Inc. Bergman Associates Inc. Billitier Electric Corp.

Boulter Industrial Contractors Inc. BSG Building Services Group Cannan Alexander & Scott LLC Day Automation Elmer W. Davis, Inc. Erdman Anthony & Associates HBT Architects Holdsworth Klimowski Construction, LLC HOLT Architects LeChase Construction Services

Logical Control Solutions Molina Healthcare Pettis Pools Postler & Jaeckle Corp.

R.F. Peck Co., Inc. R.L. Kistler, Inc. R.P. Fedder Industrial, LLC Schuler-Haas Electric Corp.

Sedgwick Business Interiors Spartan Environmental Wisteria Flower & Gifts

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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.

Awareness challenge B&L Wholesale Corey Brown Childhood Cancer Cycle for Hope Daniel’s Race Andrew Divita Fairport Music Festival Howard Hanna Hear Me Now

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Josh Landscaping Music for Mom Roberts Wesleyan College Rossi “heartaversary” fundraiser Seyrek Sealers, LLC Smash Therapy fundraiser Stroll for Strong Kids Virtual walk and 5K participants Western New York Optics

Upcoming Community Events

Golisano Children’s Hospital Advancement Office

585.273.5948 | www.givetokids.urmc.edu

August 30 Golf Classic Oak Hill East and West courses and Monroe Golf Club A great day of golf on three separate courses! For more information on sponsorships, contact bfindlay@admin. rochester.edu

October 23 Golisano Children’s Hospital Gala Floreano Riverside Convention Center Details to-be-determined based on COVID restrictions.

For more information, contact bfindlay@admin. rochester.edu

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

Public Relations and Communications 585.273.2840

Scott Hesel Sr. Public Relations Associate Correna Dolce Public Relations Associate Karen Ver Steeg Art Direction & Design

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

Save the Date Join us for the

2021 Golisano Children’s Hospital Gala “Together Again”

Saturday, October 23, 2021 Floreano Riverside Convention Center

More specific details on the event will be forthcoming. We hope you will join us and help make more miracles happen for the children in our region.

For more information, contact Betsy Findlay at 585-208-3546 or bfindlay@admin.rochester.edu

To make a donation online go to givetokids.urmc.edu 30

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