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Miracle Kid: Ben Tulgan

Ben Tulgan crawlingPreemie fights through bleak diagnosis, multiple surgeries

Ben Tulgan catches himself on the edge of the couch before turning back to the photographer who has captured his attention. The camera is just a foot away. Clearly within reach.

Steadying himself with his right arm, he leans over and swats at the lens. A miss. He nearly loses his balance as his mother, watching from nearby, starts to giggle. Casting her a puzzled look at first, his face quickly brightens, and he joins her in laughter.

“We were unlucky for a lot of reasons,” said Sasha Tulgan. “But looking at him, we really feel, so, so lucky. He's happy, he laughs a lot, he sleeps through the night. He's just so easy.”

If anyone deserves a bit of relief, it's the Tulgan's, who spent an astounding 147 days in the Golisano Children’s Hospital Neonatal Intensive Care Unit (NICU). That tenure made Ben the oldest baby on the unit when he was finally discharged in January 2016.

Today, Ben is carefree and cheerful, and shows almost no wear and tear from his long stint in the children’s hospital. But for a time, his parents weren’t sure they would ever bring him home.

An early start

Sasha Tulgan was coming back from vacation, just 24 weeks pregnant, when her water broke outside of Albany. She traveled with her husband, Adam, to the nearest hospital, and though she wasn't in labor, physicians were initially unwilling to discharge her.

But the Tulgan's wanted to get back to Rochester.

“We knew it was a high-risk situation – it would basically be a three-hour ambulance ride,” said Sasha. “But we knew we would be there for some time. We wanted to be close to home.”

Ben with Mom and DadFortunately, they made it back without issue, and physicians in Rochester began monitoring baby Ben’s heartbeat round the clock. The goal was to keep him in the womb for as long as possible, as every additional day would give him an added chance to grow and develop. As it turned out, Ben got an extra two weeks inside before his heart rate slowed, forcing doctors to initiate delivery.

Any child that survives a birth at 26 weeks is a fighter, for certain. Adam Tulgan’s strongest memory of this time was just how small his son looked at first — how a wedding band fit around Ben’s entire hand.

But what came next for Ben is what makes him a true miracle: At birth, doctors discovered that he was hydropic, meaning there was excess water in his system. Usually, this means organs are failing.

“There are a variety of conditions that lead to hydrops, and depending on the cause, the mortality rate is between 50 and 98 percent — and that’s for children who are born at full term,” said Patricia Chess, M.D., Professor of Neonatology at Golisano Children’s Hospital.

Upon delivery, Ben wasn’t breathing or showing any signs of movement. His heart rate was low. He was so unstable that he couldn’t be treated with the standard dose of surfactant — which helps premature infants’ lungs develop — and had to be placed on high-frequency ventilation. His muscles weren’t being properly oxygenated, and his kidneys weren’t functioning well.

Despite the bleak outlook, Chess promised the Tulgan's that she would do everything she possibly could.

“Dr. Chess has an extraordinary ability to convey a sense of optimism and reassurance,” said Sasha. “She didn’t sugarcoat anything — she was very direct. But we felt we could relax when she was there, because it was clear how deeply she cared. She was always in it with us.”

Emotional rollercoaster

Ben looking up.After a few days, Ben was relatively stable, and he continued to improve for about three weeks. But he needed treatment for an unclosed hole in his aorta — a condition called Patent Ductus Arteriosis — and the treatment caused his already-weakened kidneys to shut down entirely. If  Ben’s body couldn’t start producing urine, he would die, doctors said.

On the day they met, Chess told the Tulgan's that any NICU stay is a rollercoaster ride, but that she would check in on them, and would tell them when it was time to really start worrying. Now was that time, she said.

“That was the scariest moment for us — when she said it was serious and nobody knew what was going to happen,” said Sasha. “Before Dr. Chess left the hospital, she gave us her cellphone, home phone, pager, everything. Then she emailed us at 2 a.m. after she checked his labs from home, to tell us what a positive result it was.”

Ben was rallying as his kidneys kicked into gear, but he wasn’t out of the woods yet. The hole in his aorta still hadn’t closed, and despite his fragile condition, physicians recommended going forward with a reparative surgery.

Again, Ben pulled through. “He’s a resilient little guy,” said Chess.

Going home

Other trials would follow. By the time he left the NICU, Ben had undergone a total of two surgeries, nine blood transfusions, and dozens of X-rays. Concerns arose daily about new organ systems: preemie eye disease, kidney reflux, feeding issues, respiratory challenges. But every time, he pushed past the medical obstacles in his path and continued to grow.

Ben exploring his world.By the end of his near-five-month stay, doctors and nurses had become so familiar with him that they began to dote, bringing him onesies back from their vacations and dressing him up for holidays, often while his parents were at work.

His parents brought him home on Jan. 28, 2016, two weeks before his father’s birthday.

“Taking Ben home days before my birthday was the best present I could have asked for,” said Adam Tulgan.

Now, over a year later, Ben has blossomed into a happy toddler, and is on pace with where his development would be, had he been delivered at full term. After being discharged, he hasn’t been readmitted even a single time to the hospital.

But his parents, both employees of the University of Rochester, do find themselves in close proximity to the NICU now and then.

“Given the challenges and how challenging the whole experience was, we are amazed that our associations with the place are only positive,” said Sasha. “It’s a place you never want to get to know, but for those who do, it is a very special experience.”

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