Strong Kids | 2019 | Volume 2

UR MEDICINE’S GOLISANO CHILDREN’S HOSPITAL NEWS

2019 VOL. II

Dear Friends

Golisano Children’s Hospital

Board of Directors

Welcome to our special “Miracle Kids” issue, where we share stories about children who have overcome incredible medical challenges.

In this issue you’ll find five Miracle Kids, and though each child is unique, all of their stories have some essential things in common: the courage of these children and their families, the power of love to provide healing and hope — and the importance of a medical team that can come together at just the right time, to provide just the right kind of life-saving help.

These children — along with thousands more that we see throughout the year — need the support of a wide array of specialists from Golisano Children’s Hospital, as well as the extended team of medical providers throughout UR Medicine and in children’s hometowns throughout the region we serve.

The work we do at Golisano Children’s Hospital caring for children is intricately linked with the care mothers receive before, during, and after children are born. For example, many of our Miracle Kids spend time in Golisano Children’s Hospital’s Neonatal Intensive Care Unit — but before many of them are born, we often know about the challenges they’ll face thanks to specialists in Maternal-Fetal Medicine, who care for mother and baby during pregnancy, through childbirth, and beyond.

Every Miracle Kid deserves to be the cover story!

We printed five different front pages for the 2019 Miracle Kids issue; you can see all five here.

Read their stories inside.

Diagnosing children’s risks early enables the entire team to plan for the challenges ahead.

In the case of Miracle Kid Bentley Beardslee, there were caregivers from more than a dozen medical specialties in the operating room for his birth — from Maternal-Fetal Medicine, Anesthesia, Pediatric Neurology and so many more. But for a patient and their family, they see one team. And that’s how it should be.

Wherever our patients come from, whatever they need, and however long they need us, we will be here. Just as families come together in a crisis to care for each other, our extended team of medical experts from all over UR Medicine come together in families’ hour of need. It’s our mission, and it’s our privilege to deliver that care to every family. We are honored to be part of these families’ teams, and to see our patients recover, and regain the joy of being kids again.

Sincerely,

Mike Goonan, Chair* Mike Buckley Al Chesonis Jeffery Davis Roger B. 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 Angela Pichichero Jennifer Ralph* Mark Siewert Mike Smith* Steven M. Terrigino* James G. Vazzana Alan Wood Bruce B. Zicari II

Faculty

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.

Ex-Officio

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

Honorary Members

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

Michael Amalfi Bradford C. Berk, M.D., Ph.D. Joseph 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 Jeffery Rubenstein, M.D., M.P.H. *Executive Committee

23RD ANNUAL UR MEDICINE GOLISANO CHILDREN’S HOSPITAL

STROLL FOR STRONG KIDS & 5K RUN SATURDAY, JUNE 1, 2019 GENESEE VALLEY PARK 1000 EAST RIVER ROAD ROCHESTER, NY 14623

Calling all units! Join Sandy and her friends for the 23rd annual Stroll for Strong Kids to benefit Golisano Children’s Hospital.

The Stroll for Strong Kids is a fun-filled event that benefits thousands of children in our community by directly supporting Golisano Children’s Hospital at the University of Rochester Medical Center.

In addition to costumed characters greeting families during the walk, there will be bounce houses, carnival games and other entertainment for the kids.

Lunch is provided for all participants following the Stroll.

$30 MINIMUM REQUIRED TO PARTICIPATE IN THE 5K RUN OR STROLL ($40 the day of the event for 5K Run only) Pre-registration is required for both events.

7:30– 8:15am

5K Run packet pick-up & registration near the park’s Elmwood entrance

8:30am

5K Run begins near the park’s Elmwood entrance

8am– Noon

Stroll registration near the Round House Pavillion

10:30am

The Stroll Walk begins near the Round House Pavillion

For more information about the Stroll and to pre-register, visit

givetokids.urmc.edu/stroll Presented by:

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Gabriella Trobia Newborn struggles to breathe from rare condition, beats the odds after 47 days in the NICU

Alexandria and Emily Trobia could see the doors to the delivery room at Highland Hospital as they eagerly awaited the arrival of their baby sister, Gabriella. But what began as a quick and normal delivery would soon turn into an unexpected and dreadful waiting period for the family.

Something must have gone wrong, but with whom? Was it their mom? Was it their baby sister?

As they waited for answers, their mother, Kim, was overcome with fear in the delivery room as she realized her youngest daughter wouldn’t be heading home any time soon. In fact, Kim didn’t know if Gabriella would survive the grave complications that arose after her birth.

When doctors cut the umbilical cord, Gabriella was unable to breathe on her own and her heart rate began to drop. Four years later, Kim still remembers overhearing the phone call staff made to the Golisano Children’s Hospital (GCH) transport team, asking for immediate help.

“I heard them say ‘Get the crash cart ready.’ I had no idea if she was going to make it,” said Kim. The neonatal medical transport team arrived within minutes after delivery and worked with the Highland medical team to continue the resuscitation and CPR on Gabriella. It took two hours to stabilize the newborn before she was able to be transported to GCH for continued care. Kim will never forget the comfort she received from her obstetrician, Rita Clement, M.D., who stayed with her for more than two hours after delivering Gabriella.

“That was an experience that is difficult to put into words. Kim and her family showed incredible strength during an extremely difficult time,” said Clement. Kim was transferred shortly after, where Kim would find herself by Gabriella’s side in the NICU for the next 47 days.

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Upon arrival to GCH, Gabriella required significant breathing support from a ventilator and was still very unstable. After several chest X-rays, the medical team determined that the space around Gabriella’s lungs was filled with fluid and an emergent procedure was needed to help drain the fluid so she could get the vital oxygen she needed.

“Gabriella was diagnosed with a rare neonatal condition called congenital chylothorax,” according to Christina Sollinger, M.D., a neonatologist at GCH who was involved in Gabriella’s care.

“Lymphatic fluid circulates throughout the body; however, in newborns with this diagnosis, the circulation of that fluid is abnormal and fluid can build up in spaces around the lungs. This makes it very difficult for these infants to open their lungs and breathe,” said Sollinger.

Additionally, because of the challenges that Gabriella had getting oxygen after birth, there was significant concern about potential brain injury.

Gabriella was also diagnosed with hypoxic ischemic encephalopathy (HIE) and was placed on a cooling blanket for 72 hours to help her brain recover.

When Kim learned that her newborn had not only one, but two potentially life-threatening diagnoses, she blamed herself: “What did I do? How did I cause

this?” Kim didn’t experience any medical issues with her two older daughters, so she had a hard time making sense of Gabriella’s diagnosis and how it happened. The medical team reassured Kim that she was not to blame.

Congenital chylothorax is a rare and complicated condition that affects approximately 1 in 10,000 newborns with a mortality rate that ranges between 20 to 60 percent. With the additional diagnosis of HIE, Gabriella’s prognosis was uncertain. “This was a challenging situation because we were dealing with two serious medical conditions that required hourby- hour assessment and treatments. The first few days were tenuous for Gabriella,” said Sollinger.

Kim remained by Gabriella’s side day in and day out as the newborn remained under sedation. “She seemed to be getting better, but every time she had a setback, it was a really big setback and I wondered if she was going to survive,” said Kim. The medical team was cautiously optimistic. With two serious diagnoses and multiple tubes running through Gabriella, Kim says there were many highs and lows. The mom of three recalls doctors sharing several concerns with her. “They weren’t really sure what her level of function would be if she survived.

Gabriella with her parents Kim and Steve, and siblings Alexandria and Emily.

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They were also preparing for Gabriella to experience seizures once she came out of sedation. All we could do was wait and see.”

After Gabriella was taken off the cooling blanket, she started to quickly show promising signs of brain recovery. “She opened her eyes, would look right at us, responded to touch, and although still dependent on a breathing tube and ventilator, was trying to breathe on her own. We were very hopeful for a full neurological recovery for Gabriella,” shared Sollinger.

After weeks of medical treatment, and with the support of a ventilator, the fluid accumulation in Gabriella’s chest for the congenital chylothorax slowed down. Her chest tubes were removed and, eventually, Gabriella no longer needed the ventilator to breathe.

While overjoyed, Kim was also nervous when Gabriella was cleared to go home. “She had so many breathing issues … I was afraid I wouldn’t know what to do if she went into distress,” said Kim. She also had to reduce Gabriella’s fat intake by skimming her breast milk and combining it with a special formula available only at Strong. “She was on eight different medications. It was a lot to handle, especially because she also had pulmonary, cardiology, and gastroenterology appointments she had to go to,” said Kim. Kim credits the medical staff for giving her the strength to get through such a grim experience.

“They were the most amazing doctors and nurses in my life.” What the doctors and nurses may have not realized during Gabriella’s care is how Kim was watching them, for reassurance. “They may have been nervous, but they always remained calm. It was amazing.”

Today, Gabriella is a happy and energetic 4-yearold. While there are some issues she still has to deal with, such as chronic lung disease and having to use a nebulizer for the common cold, which changes medication from a liquid to a mist so it can be more easily inhaled into the lungs, Gabriella is full of life and scores above average in everything she does.

“It’s hard to look at Gabriella today and imagine how incredibly sick she was when our neonatal transport team met her at Highland Hospital that night four years ago,” said Sollinger. “Her story is an excellent example of how multiple hospitals and medical teams work together to provide the best possible care for newborns in our community.

Gabriella also had an incredible family who sat by her side every single day and participated in her daily care — something I am certain helped her recovery.”

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Bentley Beardslee Team comes together to save newborn facing rare, life-threatening condition

The night before her scheduled C-section, Courtney Swetman stood over her sink at 2 a.m., alternating scrubbing dishes and rubbing her back. At 37 weeks pregnant, she was physically and mentally exhausted, but she couldn’t sleep, and the activity took her mind off of what was to come.

“It didn’t really hit me until then,” said Courtney. “I had been trying to hold it together for everybody else.”

Like all expectant mothers, Courtney had been anxiously waiting for this day. But she had an especially good reason to be restless: Her baby boy had a rare condition that would make his birth the next morning extremely complex. It was so problematic that doctors had been preparing and planning his birth for months — even rehearsing it, multiple times.

“This was one of the most complicated births I have ever been a part of,” said neonatologist Kristin Scheible, M.D. “We knew things could go south, really fast. So we had to be prepared.”

Maternal-Fetal Medicine specialists from UR Medicine Perinatology first discovered that something was wrong at Courtney’s 20-week ultrasound. Her baby, who she planned to name Bentley, had a mass on one of his lungs.

“They said that it could get bigger and be really bad, or it could get smaller, and go away,” said Courtney. “It was scary, but we just tried to be optimistic.”

But the mass grew.

And grew.

And grew.

For the rest of her pregnancy, Courtney visited the Perinatology team — the largest in the region — frequently. Using Level II ultrasound capabilities and fetal MRI imaging, doctors followed the mass closely, monitoring its growth and watching for complications.

Eventually, the mass took up a large portion of Bentley’s chest, pushing his heart and organs out of the way and making it difficult for them to function. Doctors warned Courtney and Rob that their baby might pass away before he was born, and if he survived, his prognosis might be bleak.

The team offered Courtney and Rob the option to deliver their baby at another facility out of state, where doctors can treat conditions like Bentley’s during pregnancy. But Courtney had a 2-year-old son, and she and Rob couldn’t move their family away from their home in Lima for months while they waited for Bentley to arrive.

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Bentley with his parents, Courtney and Rob, and big brother Kayden.

“We looked at our options, and what was going to be the best outcome for our family,” said Courtney.

“In the end, I had to trust the people that were here.”

Laura Price, M.D., who was a trainee in the neonatology fellowship at the time, and Kathryn Drennan, M.D., an obstetrician and Maternal-Fetal Medicine specialist from UR Medicine Perinatology, brought together a team of doctors from a dozen different services to meticulously plan every detail of Bentley’s birth and treatment.

First, doctors decided that Courtney would be the first mother to deliver a baby in the children’s hospital, instead of the obstetrics floor at Strong Memorial Hospital, where women usually give birth.

The team wanted to be able to transport Bentley — emergently if necessary — to a pediatric operating room, where surgeons would attempt to remove the mass on his lung.

Next, the team consulted with colleagues around the country to get their input on how to manage the delivery. Then, they decided who needed to be in the operating room — including specialists in everything from radiology to otolaryngology — and exactly where they were going to stand.

“Because we needed so many different providers to care for Courtney and Bentley, we even planned how we were going to communicate and what we were going to say,” said Scheible. “It was extremely wellchoreographed.”

Doctors then simulated the birth in the operating room with a mannequin, rehearsing it six times before they felt confident that they knew exactly what to do once Bentley was born.

“It was the most planning I have ever seen,” said pediatric surgeon Derek Wakeman, M.D. “The team considered every outcome possible.”

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Doctors had a separate — but just as detailed — backup plan that they aimed to use if Courtney went into labor prematurely. But, luckily, she didn’t, and on March 13, 2018, she gave birth to her baby boy.

Because of the size and location of Bentley’s mass, his team expected he wouldn’t be able to breathe sufficiently on his own. So Price and Drennan led doctors in performing an “EXIT” procedure that had not been used at the children’s hospital in more than 10 years.

After the Maternal-Fetal Medicine team used a special device to open the womb, they partially delivered Bentley to his shoulders. Then, before the delivery was completed — while Bentley was still receiving oxygen from his mother through the placenta — otolaryngologist Margo Benoit, M.D., inserted a breathing tube. After his oxygen support was secured, the team cut his umbilical cord, completed the delivery, and safely finished Courtney’s surgery.

“Delivering him in this way was critical for a good outcome,” said Drennan. “We knew that Bentley’s heart and lungs were going to have a hard time functioning after he was born, and this procedure helped to stabilize him for delivery as much as possible.”

Courtney and Rob got one good look at him before he was whisked away.

“I heard him crying, and that gave me some hope,” said Rob. Next door, his surgical team, Wakeman and Walter Pegoli, M.D., were ready. They hoped to delay the surgery so that his heart and lungs would get a chance to adjust to life in the outside world.

But they couldn’t wait too long, either. Every time Bentley’s lungs expanded, the mass trapped more air, making it increasingly difficult for his heart and

lungs to do their jobs. Suddenly, his oxygen levels dropped, and the team knew he needed to go to surgery — fast.

“Without that operation, he would have died in that room,” said Wakeman.

Surgeons successfully removed Bentley’s mass, and he was transported to the Neonatal Intensive Care Unit (NICU). Even though the surgery had gone well, Bentley’s doctors expected that he would still face a lot of challenges.

“His respiratory function still wasn’t normal — so it was very touch and go,” said Rita Dadiz, D.O., a neonatologist who cared for Bentley. “Usually, one nurse in the NICU cares for two or three babies at a time. But Bentley had two nurses, all to himself.”

He made it through that first night, but the next day, his condition started to deteriorate. Doctors knew they were going to have to place him on a special type of life support system — called extracorporeal membrane oxygenation (ECMO) — that would do the work of Bentley’s heart and lungs for him.

Children who need ECMO usually have about a 50 percent chance of survival, and the treatment is often a last resort. But considering what Bentley had already been through, his odds were even longer.

“They told us multiple times to prepare ourselves for the worst,” said Courtney. “It was so difficult. I kept thinking about losing him, and if we did, how we were going to explain what had happened to his big brother, who just wanted Bentley to come home.”

ECMO treatment often leads to complications, and the next few days were a rollercoaster. After nearly three weeks, doctors decided it was time to see if Bentley was strong enough to survive without

ECMO. “We really weren’t sure how it was going to go,” said Scheible. “I was biting my nails, and thinking: Is this going to work?”

But once again, Bentley impressed his care team, and pulled through.

Coming off ECMO marked a turning point for Bentley. He wasn’t quite out of the woods yet, but he was stable, and his family was finally able to breathe a sigh of relief.

After five months in the NICU, Bentley went home. He’s now breathing all on his own, and doctors hope to remove his feeding tube soon. In March, he celebrated his first birthday.

During a recent visit to Golisano Children’s Hospital, Bentley sat on the floor, taking in the toys around him before reaching for a toy truck. He turned to get a glimpse of his big brother, Kayden, and hearing his dad’s voice behind him, broke out into a smile.

“Looking at him now, it tears me up to know where he came from,” said Rob. “Every day, we’re amazed by what he’s able to do.”

And there’s no question why he’s here.

“Had that planning not taken place, and had he not been born in the children’s hospital, I’m not sure he would be with us,” said Wakeman. “That’s what saved him.”

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Halani Rolle Infant beats rare cancer with help from her big sister

By the time 4-month-old Halani Rolle arrived at Golisano Children’s Hospital, she was pale, seemed to be in pain, wasn’t eating, and had bruising on her left cheek and stomach.

She’d been transferred from a Buffalo hospital for a bone marrow transplant — her best chance of a cure for what had been diagnosed four months earlier as acute myeloid leukemia, a type of blood cancer that starts in the bone marrow.

Halani’s prognosis was poor. AML in infants is extremely rare and generally aggressive, with modest cure rates. Infant bodies are fragile and prone to toxic side effects. In Halani’s case, a specific genetic mutation made the disease even more rare, more aggressive and more difficult to treat.

Her chance of survival: about 20 percent.

Doctors at Golisano Children’s Hospital see cases like hers once or twice in a decade, according to Jeffrey R. Andolina, M.D., a pediatric hematologist-oncologist and director of Pediatric Bone Marrow Transplantation at Golisano Children’s Hospital.

“When your child gets diagnosed with cancer, the first thing that hits you is fear, then anger,” said her father, Jason Rolle. “You see commercials on television for places that treat kids with cancer, but you take them for granted. Then you’re faced with, ‘Why my child?’”

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Halani with her parents, Crytal and Jason, and siblings Julian and Harlem.

At first, Halani’s pediatrician thought she had an upper respiratory infection. But after Jason and Crystal Andreassen, Halani’s mother, brought her back to his office, tests showed she had a white blood cell count of 583,000. It should have been between 4,000 and 10,000.

Halani spent the next three days in the neonatal intensive care unit in Buffalo, while her parents attended one meeting after another with doctors to learn about, and try to process, what was happening with their daughter.

“She was hooked up to a bunch of machines,” said Crystal. “There were a lot of doctors and nurses running about. I was just scared and numb.”

Considered a high-risk patient, Halani had three rounds of strong chemotherapy and bone marrow biopsies over the next several months. Her hair began to fall out and she mostly slept.

Despite the intensity of her treatment, it wasn’t strong enough. Halani needed a bone marrow transplant, also known as a stem cell transplant.

A matched sibling is the most optimal donor, so Halani’s 8-year-old brother, Julian, and 5-year-old sister, Harlem, had what’s called HLA typing — HLA stands for human leukocyte antigen — to find out whether either of them had a similar tissue type.

The blood test, a way to tell how closely the tissues of one person match the tissues of another person, discovered that Harlem was a perfect match. A perfect match happens only in one out of every four cases in full siblings.

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this was, and what it would do for Halani,” Crystal recalled. “The day they took her into the operating room and put the mask on her face, we both cried together.

“But when she woke up,” she added, “we went to the park and she went swinging.”

As part of the bone marrow transplant process, Halani received chemotherapy for seven days straight. The high doses required for her treatment plan led to an uncommon complication called veno-occlusive disease of the liver, which happens when small vessels that transport blood through the liver become blocked. The condition caused her to develop an enlarged liver, known as hepatomegaly.

Her liver then caused her abdomen to become distended, making her very uncomfortable.

Thankfully, her liver problems improved with good, supportive care, including potent diuretics to reduce the extra fluid in her body.

Over time, as Halani healed from the transplant and adapted to her sister’s stem cells, every one of her liver tests — and the size of her liver — improved and ultimately recovered completely.

“There were no surprises, no last-minute decisions,” said Crystal. “Dr. Andolina and the nurses were so respectful. We knew everything as they knew everything.”

There would be more to learn.

Radiation often is used in AML cases, but because exposure in infants has been linked with learning disabilities, her medical team decided to do spinal

taps with chemotherapy—every two weeks for six months — to address the leukemia in her spinal fluid.

“It’s unusual to do any spinal taps after a bone marrow transplant, and even more unusual to do 12,” said Andolina.

That number may have been arbitrary, but Halani’s treatment was so successful that her oncology team used her exact care plan six months later on a second infant with AML — another unusual situation — to similarly successful results so far.

There was, in fact, one last hurdle to face before going home. Halani was put on an immunosuppressive medicine for nearly six months to make her body less likely to reject her new bone marrow. Even so, she developed a mild case of graft-versus-host disease, a common complication.

Harlem’s immune cells started attacking Halani’s healthy cells, which they saw as foreign, resulting in an itchy rash.

After being treated with Prednisone, Halani — after spending five weeks at Golisano Children’s Hospital — was able to go home.

At that point she had spent half of her life in a hospital room.

Even now at 18 months past her transplant date, Halani has retained the same sleeping schedule she kept at Golisano Children’s Hospital: in bed between 11 p.m. and midnight, sleeping late into the morning.

“The nurses treated her like she was their own, and I think them spoiling her contributed to her terrible twos,” joked Crystal. “Harlem tells her all the time, ‘Halani, I saved your life. You have to listen to me.’”

Now 2 years old, Halani returns to Golisano Children’s Hospital every three months for bloodwork and vaccinations. She needs her vaccinations repeated because after the transplant, her immune system reverted back to that of a newborn baby. It takes between six months to one year after a bone marrow transplant for a patient’s immune system to slowly start forming again.

With a personality as bouncy as her dark curls, Halani tends to be all smiles.

“She comes in and runs around, screaming,” said Andolina. “She’s happy and active and wild. It’s so nice to see she didn’t have any side effects from the treatments.”

In fact, Andolina considers her cured.

Halani loves to swing at the playground, read My Little Pony books, and sing along to animated penguin shows on YouTube.

“She’s like a normal child now,” Crystal said.

Said Jason: “This just makes you appreciate everything you have. Even if you don’t have a lot, it makes you feel like you have a lot.”

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Zach Losee Teen brought back to life after sudden heart failure

Sirens blaring in the background, Zach Losee gasped for air as paramedics rushed him into the hospital. He looked up at his mom’s panicked face and used all his energy to take one more breath.

Within seconds, dozens of nurses and doctors surrounded him and began working in a fury. Zach could hear them talking, but their words were jumbled, and soon, their faces began to blur.

“He’s turning blue,” one doctor said. “Does anybody have a pulse?”

Zach’s mother held his hand and desperately tried to keep his attention.

“We are where we need to be. It’s going to be OK,” she told him.

But in the next moment, she saw Zach’s eyes close. His hand went limp in hers.

Just nine days earlier, Zach, a freshman at Brockport High School, was playing in a JV volleyball match. He was healthy — a completely normal 15-year-old.

So when he started to feel under the weather, Zach and his mom assumed it was a cold, or, at worst, the flu.

“We thought it was a little viral thing that had been going around,” said his mom, Julie Prest. “He stayed home from school, and I made him chicken noodle soup.”

But within hours, Zach’s health took a drastic turn for the worse, and he felt weaker than he ever had before. Julie brought him to the emergency room at Strong West, and on their way through the door, Zach collapsed. Doctors knew he had to be transported to Golisano Children’s Hospital.

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Zach with his mom, Julie.

“The ambulance ride is a total blur,” said Julie. “I remember them asking us questions and talking to Zach, trying to get him to stay with us.”

Later, Julie found out that Zach’s heart had stopped on the ambulance ride — twice — and paramedics had to give him epinephrine to restart it.

By the time he made it to the hospital, Zach was barely alive.

“When he came into the emergency room, Zach’s heart function was so poor that it couldn’t maintain adequate blood flow to his organs,” said Jill Cholette, M.D., medical director of the Pediatric Cardiac Intensive Care Unit (PCICU). “His heart was failing, and so were his kidneys and his liver.”

The emergency department team inserted a breathing tube and whisked him upstairs to the PCICU. There, the team was able to stabilize him as much as they could, but his heart couldn’t continue to work on its own and it was clear that he was going to need additional support.

Zach was taken to the cardiac catheterization lab, where pediatric cardiac surgeon George Alfieris, M.D., cardiologist Rajiv Devanagondi, M.D., and the pediatric interventional cardiology team placed him on an advanced life support system.

The machine, called extracorporeal membrane oxygenation (ECMO), acted as Zach’s heart and lungs, delivering oxygen to his blood and pumping it throughout his body.

Without ECMO, Zach would have died within an hour. But he was still facing long odds: Children who are ill enough to need ECMO have about a 50

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percent chance of survival.

“At this point, Zach was alive, and that was a miracle,” said Cholette. “But we didn’t know why Zach’s heart was failing, so it was unclear if it was going to recover and be able to work on its own again.”

After days on ECMO, it became clear that Zach’s kidneys weren’t bouncing back on their own. So the nephrology team placed him on continuous renal replacement therapy, a form of dialysis for critically ill patients that works 24 hours a day.

Zach was now hooked up to two high-tech machines in the bay of the PCICU, where the hospital’s most critically ill patients reside.

“All I kept thinking was: ‘This is from a cold? Is this a dream?’” said Julie. “I couldn’t wrap my head around the fact that this was happening so fast.”

Throughout Zach’s hospital stay and ongoing journey, Julie kept a detailed journal, documenting every visit from his doctors and each test he underwent.

“When the unthinkable happens, it’s easy to shy away, or curl up in the corner, crying,” said Julie.

“But I found I had to throw myself into it and learn as much as I could.”

Her notes show detailed discussions with the doctors about what could have caused Zach — a previously healthy teenager — to go into sudden heart failure.

To get some answers, Devanagondi’s team took samples of his heart muscle and sent them to the lab for analysis. The results suggested that antibodies in

Zach’s blood — which had been produced to fight an unidentified virus — had also attacked his heart, causing it to become weak and fail.

“It was the first I’ve ever seen this condition.

It’s very, very rare, and it’s scary, because his initial symptoms could have never predicted what was to come,” said Cholette. “This is something that could happen to anyone.”

Zach’s care team started him on high-dose steroids and a treatment called plasmapheresis, which filtered his blood and removed the harmful antibodies. The treatments allowed his heart to get stronger, and after 19 days, he was able to come off ECMO. “We had to explain to Zach what had happened to him, and it was difficult. He struggled with it — last thing he knew, he was out on the volleyball court,” said Julie. “But we were just grateful he was alive.”

As Zach got stronger, he moved from the bay of the PCICU to a room on the unit. He started physical and occupational therapy, and his kidneys rebounded, too.

“The fact that Zach’s kidneys did recover significantly improved the chances that his outcome would be OK,” said nephrologist Marc Lande, M.D. “It was truly a collaborative effort to get him to this point.”

Despite Zach’s progress, doctors determined that the ordeal had caused too much damage to his heart, and it wouldn’t be able to support Zach for much longer on its own.

The night before Thanksgiving, Zach was

transported to a hospital in New York City. There, the team surgically implanted a heart pump, called a ventricular assist device, to support his heart while he waited for a transplant.

With a rare blood type and a shortage of donated organs for transplant statewide, Zach and Julie steeled themselves for a long wait. But to their surprise, a heart became available quickly, and he underwent a successful transplant in early December.

By mid-February, he was home.

Now, Zach is back at school. He’s catching up with his friends, and he’s looking forward to playing volleyball again in the fall. Life isn’t exactly back to “normal” yet, but it’s getting there.

Inspired by his journey, Zach hopes to be an advocate for organ donations, and he’d like to be a driving force in increasing services here at Golisano Children’s Hospital — so that someday, children like him will be able to have a heart transplant right here in Rochester.

“I am overwhelmed to know that I got a second chance at life,” said Zach. “I hope others will make the same decision that my donor did.”

Zach and his mom have been back to the hospital to visit a few times. They have a lot of people to see, including caregivers from a dozen different divisions who took part in his care. But the person Zach wanted to visit the most was Helen Witherspoon: a patient care technician who was by Zach’s side through his most challenging days.

“Everybody that we have met on this journey has impacted Zach, his recovery, and myself in such a way that we are so grateful to each and every one of them,” said Julie. “They saved his life.”

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Adrianna Disalvo 11-year-old recovers from rare, life-threatening brain hemorrhage

It was 7:30 a.m. on Monday, April 30, 2018 when Barb Disalvo drove her daughter to school. Adrianna was an 11-year-old in the sixth grade. The morning trip had become routine, and this one began just like any other day. That would change within a few hours, when Barb received a phone call from the school nurse.

Adrianna was in her office with nausea and complaining of a severe headache. Barb rushed back to the school immediately.

Adrianna had a history of headaches and migraine headaches. She would develop a headache at least four to six times per month. But when Barb walked into the school nurse’s office that morning, she realized this was more than a headache. “Adrianna wasn’t responding. At first, we thought it was a food reaction, so we checked her locker and her book bag for any signs. We also talked to her friends. But Adrianna hadn’t done anything differently that day, and she was becoming less and less responsive,” said Barb. Eventually, Adrianna wasn’t responding at all, so they immediately called an ambulance.

Barb was still convinced Adrianna was suffering from a migraine, until Howard Silberstein, M.D., a pediatric neurosurgeon at Golisano Children’s Hospital, showed her the CT scan. Adrianna had a blood clot in her brain.

“They called me into the room and told me I needed to look at the scan, and while they had an idea as to what it was, they would have to do an angiogram in the morning to know for sure.”

Adrianna was placed in intensive care. The next morning, the angiogram showed that Adrianna had an arteriovenous malformation (AVM) rupture that caused a hemorrhage in her brain. She would require surgery the next day. An AVM rupture is the consequence of an abnormal tangle of blood vessels leaking blood into the brain tissue.

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Adrianna with her mom, Barb.

As a consequence, the hemorrhage exerts pressure on the brain tissue, causing neurologic impairment.

Left untreated, there can be subsequent strokes and recurrent hemorrhage. “It’s something we don’t see very often, and it can be very complicated to treat,” said Silberstein.

Barb describes the turn of events on the morning of April 30 as surreal. “I dropped my child off perfectly healthy, made plans, and within four hours was told she has a blood clot in her brain. It’s very hard to describe where you go with your thoughts. One part of me knew I couldn’t fall apart because I had to remain focused on Adrianna so I knew how to handle everything. Another part of it is scary because of the unknown, thinking about how it will affect her, and how rare this is in children — especially in a girl.”

AVMs affect less than one percent of the population. In his 28 years of practice, Silberstein says AVMs continue to be rare. “It’s unpredictable to know how a patient will do.”

Adrianna would undergo surgery for nearly six hours. It would not be without complications. As the medical team prepped her the night before, Adrianna’s vital signs began to drop. Her pulse was dangerously low at 35. It took a team of nearly 10 physicians to stabilize her. Once she was stabilized, Silberstein and his surgical team were able to begin the complicated surgery. “We had to perform a craniotomy where we remove a portion of the skull 21

UR MEDICINE | GOLISANO CHILDREN’S HOSPITAL

and open the covering of the brain to remove the clot. We then had to find the AVM and take it out,” he said. The process of isolating and removing the AVM requires meticulous dissection and coagulation under the operating microscope.

Adrianna didn’t wake up for two days. As she started coming to, her mom says she was slow in getting up and around. Barb also noticed a change in her personality. “She was a lot more withdrawn and easily overstimulated. We had to work through it.”

Physical therapy helped Adrianna walk again. Soon, friends were visiting the energetic and vibrant girl they had come to know in school. “The last thing she remembered was being in gym class and then hearing a loud popping noise in her head,” recalled Barb.

After spending eight days in the hospital, Adrianna was ready to go home. She wasn’t allowed to do much because of the stitches, a challenge for a girl who is normally quite active. “Because she had been so healthy, though, doctors told me not to let her sit around so she wouldn’t get depressed.”

Soon, Adrianna returned to school on a parttime basis. The Adrianna that Barb knew before the surgery slowly began to reemerge. Six to eight months later, Adrianna’s personality returned to what it was before the AVM rupture. “To look at her physically, you would never know anything happened.” The only physical sign is a scar from one ear to the other.

“Everything we experienced at the hospital was amazing, from the one-on-one care with nurses to the doctors who took the time to stop to listen and answer our questions.”

Silberstein wasn’t completely surprised by Adrianna’s recovery. “Children in general make good recoveries.” In cases like this, most children or teens would also need brain rehabilitation. Adrianna wasn’t one of them. While AVMs can grow back, Silberstein says it’s unlikely. Last August, Adrianna had another angiogram that showed her brain was healing well. While her concentration in school isn’t quite what it used to be (at least for now), Adrianna is back to playing sports. She’s had only one migraine since the surgery and is due for another angiogram in May to confirm there has been no recurrence of her AVM. Barb looks back at that “overwhelming” time in her life and is eternally grateful to the medical team that treated her youngest of four children.

“Everything we experienced at the hospital was amazing, from the one-on-one care with nurses to the doctors who took the time to stop to listen and answer our questions.”

While children are known for their resilience, Silberstein says it’s also the strength of a family that can determine a positive outcome. “They were a great family to work with. They were very appreciative of the care and attention Adrianna was getting and they asked good questions. They put their faith in our team.”

Gary Myers, M.D., Honored With Robert Joynt Kindness Award The University of Rochester Medical Center Board presented Gary Myers, M.D., a child neurologist, with the Robert Joynt Kindness Award on Jan. 22. The award recognizes caregivers who demonstrate exceptional kindness and compassion when working with patients, and is named for URMC’s first vice president and CEO. “Gary is far and away the kindest and most compassionate physician I have ever met,” said Carl D’Angio, M.D., a neonatologist at Golisano Children’s Hospital who nominated Myers for the award.

“He is always soft-spoken, never rushed, and ever compassionate. He has a way of seeing the best in each child, regardless of their challenges, and of conveying this hope to their parents.”

Myers began his career in Rochester in 1971, and after a stint at the University of Alabama at Birmingham, returned to URMC in 1990. In addition to caring for patients, Myers is also a dedicated teacher and mentor.

He is a strong advocate for the highest-quality research to benefit children with neurological diseases, and has been an essential collaborator on a major study on fish consumption during pregnancy for more than 30 years.

“Gary sets the standard for kindness and generosity,” said Jon Mink, M.D., Chief of Child Neurology. “He is a constant source of support for his colleagues and trainees, providing wisdom and experience. Beyond advice, he provides an example for all of us to follow.”

Myers has also been a vital driving force in the efforts to have more formal clinical collaboration between neonatology and child neurology, and his colleagues said he is always the first person to volunteer to assist them or fill in coverage gaps.

“Perhaps most importantly, Gary gives his time: to students, to trainees, to colleagues, and to friends,” said Robert Holloway, M.D., chair of Neurology at URMC. “In all of those ways, he emulates Bob Joynt, who was a real-life hero whose gifts we will continue to pass on for generations to come.”

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For B&L Wholesale Supply President Don Tomeny and his wife, Leslie, gratitude for their family’s health led to their $1 million donation to set up The Tomeny Family Social Workers’ Endowment. The gift will provide between $50,000 and $60,000 annually in investment earnings far into the future — without touching the principal.

“We have three children and eight grandchildren,” says Don, “and it’s out of appreciation as much as anything else that none of them has ever needed to go through what a lot of people have to go through.”

The endowment covers expenses large and small. A single mother of three with a baby in the Neonatal Intensive Care Unit, for example, received a full-size refrigerator to replace the broken Styrofoam cooler she was using to store food.

Another woman was given bus fare and lunch money so that she could get her 4-year-old to Golisano Children’s Hospital for six-hour chemotherapy treatments.

Don says he often hears about social workers taking up their own collections to help out when needed, and that stepping up to help support that generosity simply makes good sense.

“Social workers are incredibly dedicated people,” he says. “This was as much about helping them as helping other families.”

For the shared campus of Dudley and Northside elementary schools in Fairport, hosting fundraisers for Golisano Children’s Hospital is personal.

“Several of our staff members have had children helped there, and many of our students have been supported by the hospital,” says Erin Moretter, principal at Northside.

Wanting to give back, faculty and approximately 1,300 students in kindergarten through fifth grade over the past five years have raised more than $30,000 through their Fall Crawl Fundraiser — a one-mile walk around campus. The walk is a symbolic celebration of what the school community has done over the previous two weeks — through staff dressdown days and other donations, mostly in the form of quarters and pennies — to support the cause.

“Some of the donation stories are heartwarming,” says Dudley’s assistant principal, Ryan Charno. “Kids bring in money they get from the tooth fairy. They donate proceeds from the lemonade stands they have over the summer.”

Ryan has his own story to share. His son Christian, born in 2015 with a congenital heart defect, had open-heart surgery at Golisano Children’s Hospital when he was five days old.

Students show intense enthusiasm and spirit at the Fall Crawl. They wear red and make signs with positive messaging, directed at their peers currently receiving significant treatment and needing support at a critical time.

The Fall Crawl also puts a message extolled at both schools — to be an everyday HERO — into action. The HERO stands for “helping, encouraging, and respecting others.”

Notes Ryan: “Our kids are seeing how they can make a difference in the lives of others.”

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When Speedway acquired the former Hess retail locations in the Rochester area in 2015, the gasoline and convenience store chain rolled out change jars so customers could donate to Children’s Miracle Network Hospitals. The nonprofit organization raises funds and awareness about children’s health issues and medical research for 170 children’s hospitals throughout North America, including Golisano Children’s Hospital.

In 2018 alone those efforts brought in over $36,000.

“We try to make collecting donations fun for our customers and our employees, and we set goals each day and month as a district,” says district manager Justin Szymaniak, who oversees the operations of 15 locations. “The same goes for the other districts that support the Rochester area.”

Speedway adds celebratory elements to push sales and donations on selected weekends, called “push weekends.”

Employees sometimes dress up as superheroes or wear sports team uniforms, and ask customers to buy balloons, postcards or other merchandise whose proceeds will directly benefit Golisano Children’s Hospital.

“Having a competition for a free lunch or a day off always drives everyone to do more as well,” Justin says.

Speedway, which has a longstanding relationship with Children’s Miracle Network Hospitals, has nearly 400 employees in the 43 locations that participate in the region.

“In partnering with Golisano Children’s Hospital, we know that 100 percent of our donations go straight to supporting the children who need help, whatever the reason may be,” says Justin. “We also know that they receive the best possible care at Golisano, and through our support they can go above and beyond for those children.”

Anthony Jason Poselovich was diagnosed with hepatoblastoma, a very rare form of liver cancer, when he was just shy of his first birthday.

He had chemotherapy and a liver transplant, but a few months later the cancer had spread to his lungs. More chemotherapy and radiation followed.

“It was quite the battle over the next three years,” remembers his father, Jason. “The cancer eventually spread to his brain.”

After losing Anthony in November 2010, Jason and Cathi Poselovich created the Anthony Poselovich Memorial Foundation, in part to support construction at the time of Golisano Children’s Hospital. Years later, the couple is still close friends with many of the nurses who cared for their son.

With a pledge of $150,000, they decided to put his name on the Sibling Patient Room, located on the surgical floor where Anthony had more than half a dozen lung resections.

“God forbid if parents had two children in the hospital at the same time, both kids could be in the same room and it would be easier,” Jason says.

Through silent auctions, the foundation has raised nearly $200,000 over the past eight years, money that, in addition to the Sibling Patient Room, helps families at the children's hospital cope with having a child with cancer. Aside from receiving support with medical bills, funeral and obituary costs, families are able to make happy memories together with free tickets to events, amusement parks, museums and zoos.

“It’s all so they can get out and about,” says Jason, “and get away from it all for a little bit.”

The foundation also provides gift baskets filled with treats over the holidays.

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Donors Help Provide New Technology and Facilities for Children

Critically ill patients at Golisano Children’s Hospital now have improved access to high-tech monitors that can help detect lifethreatening complications, thanks to generous support from the community.

The near-infrared spectrometry (NIRS) monitors measure oxygen levels in the brain and can provide early detection of problems that are associated with low cardiac output, renal failure, shock and seizures, and neurological damage.

“Previously, the hospital only had three NIRS monitors, and we had to choose which children needed them most,” said Jill Cholette, M.D., medical director of the Pediatric Cardiac Intensive Care Unit. “Now, we are able to provide this technology to many more patients who can benefit from it.”

More than $740,000 was raised at the 2018 children’s hospital gala to be put toward the purchase of 20 new monitors, which are now being used in the hospital’s six operating rooms and three intensive care units.

“Babies in our Neonatal Intensive Care Unit now have access to more advanced care because these additional monitors are available to our team,” said Jeffrey Meyers, M.D., medical director of the NICU. “We’re so grateful that we are able to depend on the community for support for important initiatives like this one.”

Another new addition at the hospital — a therapy gym on the seventh floor — has also been made possible by donor funds.

The gym, which opened this spring, offers physical and occupational therapists a place for one-on-one sessions with patients, complete with state-of-the-art equipment.

More than $430,000 was raised for the effort at the 2017 gala.

“This gym provides us with dedicated space for therapy sessions — something we have never had before,” said Kristine Lohr, a senior pediatric physical therapist who noted that sessions were previously done in patient rooms or in the hallways. “Having privacy and the equipment we need will allow us to enhance the services we provide to children and help them recover faster.”

Therapists will have access to a multitude of tools in the space, from a therapeutic swing to exercise bikes and balance boards.

Among the new types of equipment in the gym is a SafeGait system, comprised of a harness that is attached to a track in the ceiling. The system makes it easier and safer for pediatric patients to practice walking, improve their strength, and overcome balance problems without a fear of falling.

“The space will give patients who are here for a prolonged stay the chance to get out of their rooms and work on skills in a different environment — which has the potential to have a substantial impact on their quality of life,” said Jennifer Mulford, a senior pediatric occupational therapist. “It will truly make our amazing hospital even better.”

We are extremely grateful to our community fundraisers!

Jodi B's Dance studio

Rainbow Classic

Nazareth College Battle of the Beaks

Just Beclaus

Gates Chili Middle School Peers Against Substance Abuse

Zoey's Lovely Heart Club Christmas Tree and Wreath Sale

Ryan Avery

Nazareth Music and Dance Department Charlie Brown Christmas

American Legion Post 227 Courtney Jadus and Sierra George Canandaigua Girls Volleyball team

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Last Man Standing

Section 5 Girls Soccer - Exceptional Senior game

Taylor Brush Memorial Dinner Dance

Lions Club of Chili

17th Annual Ski Day Invitational

Roberts Wesleyan College

Lions Club of Churchville

Ugly Disco

Lions Club of Scottsville

Awareness Coffee

Toshiba Business Solution

Cycle for Hope

Dr. Schwartz

Nazareth College Smile Carnival

UR MEDICINE | GOLISANO CHILDREN’S HOSPITAL

Anthony Poselovich Foundation WNY Optics Golf Tournament Rochester Amerks 4th Annual Wingfest SUNY Brockport’s Stick it to Cancer Destiny Clan Live Stream

Upcoming Community Events

Golisano Children’s Hospital Advancement Office

June 1, Stroll for Strong Kids

585.273.5948 | www.givetokids.urmc.edu

The 5K race will begin at 8:30 a.m., followed by the walk at 10:30 a.m. The event will continue until 1 p.m. with family-friendly activities, including over a dozen bounce houses, carnival games, photo booths, and much more! The event is presented by Abbott’s Frozen Custard. For information, to register, create a team, and fundraise for the Stroll for Strong Kids visit: www.givetokids.urmc.edu/stroll.

Scott Rasmussen Sr. Assistant Vice President for Advancement 585.273.5932

Genesee Valley Park, 1000 East River Road

June 8, Team Ali-Gaiter Clambake

Honeoye Falls Fireman’s Training Grounds, 321 Monroe St. From 2 p.m. to 7 p.m., attendees will enjoy clams, pulled pork, hot dogs, salads, desserts, and drinks. There will also be live music, raffles, bounce houses, costume characters, and pony rides. Tickets are available in advance and at the door. For more details, please contact Jackie Klube at 585-704-4124.

July 25, Dairy Queen Miracle Treat Day Henrietta, Greece, and Webster locations

Get ready for a cold front! For every blizzard purchased at a local Dairy Queen, $1 will be donated back to our children’s hospital. Customers can also make a donation to the hospital by purchasing a Miracle Balloon at the register.

Aug. 23 & 24, Fairport Music Fest This fun-filled event, located along Fairport's Liftbridge Lane, is great for the whole family! Enjoy two days of good music and food for a great cause. Fairport Music Fest has impacted Golisano Children's Hospital in a number of ways. Visit www.fairportmusicfestival.com for more information.

Betsy Findlay Sr. Director of Advancement, Special Events and Children’s Miracle Network 585.273.5933 Meghan Barnhardt Associate Director of Community Affairs 585.275.2268 Katie Keating Office Assistant 585.273.5931 Jennifer Paolucci Program Manager, Special Events and Children’s Miracle Network 585.273.5936

URMC Communications Jessica O’Leary Public Relations Associate 585.276.4298 Patricia Cruz-Irving Public Relations Associate 585.257.3008

A great day of golf on three private courses again this year: Monroe Golf Club, Country Club of Rochester, and Oak Hill West.

Heather Deal Graphic Designer 585.275.7779

For more information or to register please call (585) 273-5948 or contact Betsy Findlay at bfindlay@admin.rochester.edu.

Find us on social media: facebook.com/GolisanoChildrensHospital twitter.com/urmed_gch instagram.com/urmed_gch

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

givetokids.urmc.edu