After four years of infertility treatments and a miscarriage, Ryann Taylor prematurely gave birth to daughter Brynn, who measured just 29 weeks instead of 32 weeks and was diagnosed with a rare, complex congenital heart defect known as Tetralogy of Fallot with pulmonary atresia.
“It was kind of a whirlwind beginning,” Ryann said, alluding to the four-month stretch of life-threatening complications that were to come.
Born near her home in Hamburg, south of Buffalo, Brynn weighed 2 pounds 13 ounces at birth and needed to remain stable at around five pounds before being transferred to UR Medicine’s Golisano Children’s Hospital for open-heart surgery with George Alfieris, M.D., chief of Pediatric Cardiac Surgery. Though able to make the move after six weeks, surgery was delayed after Brynn stopped breathing on the table and doctors discovered she had a severe case of pneumonia.
She was able to have the surgery two weeks later, after a course of antibiotics, but had arrhythmias, or irregular heartbeats, after returning to the Pediatric Cardiac Care Center. Knowing she was being closely watched, Ryann and her husband, Dan, headed upstairs to the Ronald McDonald House for a quick dinner. They’d just finished eating when Ryann got a call from one of the nurses, telling her to come downstairs immediately because Brynn had gone into cardiopulmonary arrest and doctors were reopening her chest to revive her.
“All of a sudden I just started walking toward the door,” Ryann said. “I didn’t even say anything.”
Dan silently followed, and by the time they were midway there they were sprinting toward their daughter, now surrounded by at least a dozen doctors and nurses. They were ushered in immediately. “They told us to talk to her, to let her hear our voices,” Dan said. “They were letting us say goodbye.”
Assured that no one was giving up trying to save their daughter, Dan and Ryann went to the waiting room, where they eventually learned that Francisco J. Gensini, M.D., a pediatric cardiac surgeon at Golisano Children’s Hospital, had repatched Brynn’s chest and she was stable. What they didn’t know at the time was that Brynn’s arrhythmia was about to return; they just knew something was wrong when Gensini, who apparently had been on his way home, rushed by. “It’s always scary to see a surgeon running through the door past midnight to save your daughter,” Ryann noted. “How do you thank somebody for saving your baby not once, but twice?”
After having her chest opened again and being stabilized by manual compressions, Brynn was given extracorporeal membrane oxygenation (ECMO), a treatment for very ill babies that uses a pump to circulate blood through an artificial lung and back into the bloodstream. She was kept medically paralyzed throughout the ECMO process to keep her from moving and disconnecting any wires or tubes.
“She looked like a science experiment,” Ryann recalled. “Every day they’d give her a break from the paralytic for a couple of minutes just to see if she would move. We’d sit there for five, sometimes 10 minutes and pray for her to twitch an eyelid or thumb or something, just to make sure she wasn’t brain dead. We’d just sit there and stare and pray. It was horrible.”
The first attempt to take Brynn off the treatment was unsuccessful. “There were six or seven other kids on ECMO and Brynn was one of two who made it,” Ryann said. “You could see the monitors being turned off and curtains being closed. You would talk to other parents whose kids weren’t as lucky, and it made you feel thankful despite everything you were going through.”
The second attempt, five days after surgery, worked – and was urgent. Brynn had begun bleeding from the side of her neck, her blood levels had dropped, and she needed multiple blood transfusions. She spent the next two months recovering from a collapsed lung (a common side effect with ECMO), fighting pneumonia and a surgical site infection, and trying to tolerate feeds.
Finally, when she was 4 months old, Brynn left the hospital with a nasogastric tube, which carries food and medicine through the nose to the stomach, because she’d been intubated so long and never learned how to eat. She regularly vomited, however, and suffered from acid reflux, so she switched two months later to a gastrostomy tube, inserted through the abdomen, which delivered nutrition directly to her stomach.
Eating wasn’t any easier for her this time around. Still gagging, vomiting and losing weight, Brynn saw a gastroenterologist, who found a rare, 2.5-centimeter cyst in her esophagus that was cutting off her ability to swallow by 75 percent. Open-chest surgery to remove the cyst, believed to have been growing slowly since birth, went smoothly and Brynn was able to leave the hospital one day earlier than expected.
“Talk about a kid who had every complication that was humanly possible,” said Emily B. Nazarian, M.D., a pediatric critical care physician at Golisano Children’s Hospital, who continued to check in on the Taylors even after she stopped officially following Brynn’s case. “She beat the odds.”
Dan valued the highly personal attention his family received from the custodial staff on up: “Like Brynn, we’d have good days and bad days. These people see you at your worst and take the time to sit down and talk while balancing all their other responsibilities. After we left, we could count 50 to 60 nurses and just as many doctors we knew by first name. They made a really good experience out of a terrible one.”
At Easter, for example, one of the nurses served them a homemade dinner, complete with a tablecloth, pretty paper plates and silverware.
Brynn now sees a physical therapist and feeding therapist twice a week, an occupational therapist once a week, and a massage therapist every other week. She is quiet and observant, traits largely tied to being unable to babble or cry while intubated, with a “Stevie Nicks/Janis Joplin voice and the best stink eye ever,” Ryann said. “She doesn’t give the smiles away for free, but once you’re her friend, it’s game over.”
Though her parents know it will take time for Brynn to learn how to eat, they think about how she tolerated incessant poking and prodding while playing with Elmo apps in the hospital and know she can handle the process with patience.
“She was a little rock star through it all,” Ryann said.
This little star has been chosen to be one of the hospital’s five Miracle Kids for 2014, to represent the 74,000 children Golisano Children’s Hospital treats every year.
Tune in to the Children's Miracle Network Hospital’s News10NBC Telethon on Sunday, June 1, to meet Brynn and her family, along with four other Miracle Kid families, Golisano Children's Hospital supporters and health care providers. The Telethon is from 10 a.m. to 1 p.m. and 6:30 to 11 p.m. on News10NBC. Dial (585) 241-KIDS during the Telethon or donate online to make a gift.
The Telethon is part of a weekend-long celebration called Miracle Weekend, which kicks off Saturday, May 31, with the 18th annual Stroll for Strong Kids fundraising walk and 5K run. The event starts at 8 a.m. at Genesee Valley Park and wraps up at about 1 p.m.