The Taylor family is home with Brynn, who is growing steadily.
HAMBURG — Dan and Ryann Taylor were getting ready for Christmas, when they went in for a routine check-up appointment. Their baby was due around Valentine’s Day, so when the doctor frowned at the ultrasound and recommended she be delivered as soon as possible, Taylor’s first thought was, “I have a hair appointment today. I haven’t finished my Christmas shopping. I don’t have time for this today!”
Brynn Taylor, named a University of Rochester Medical Center’s Golisano Children’s Hospital “miracle kid,” this May, was ready to be born, but her parents weren’t ready for her, or the odyssey her birth would become.
Conception had not been easy for the Taylors. After several miscarriages and almost losing their daughter several times, Ryann Taylor had suffered a subchorionic hemorrhage, gestational diabetes and, as the doctor discovered during her Dec. 20 ultrasound, preeclampsia.
“He said I was measuring small,” Taylor explained. “But that, since I had been watching what I eat because of the gestational diabetes, that wasn’t necessarily surprising. But he took my blood pressure and it was 200/120, and that’s when he said they need to call my [obstetrician].”
The doctor ordered an ultrasound, and saw that the baby was small, coming in at only 29 weeks’ size, although Taylor was 32 weeks along. A nurse practitioner herself, Taylor said she could tell something was wrong, even before they told her the news.
“He kept going back to the heart,” she said. “So I asked, ‘Is there something wrong with the baby’s heart?’ And he said that she’s got a very large hole in her heart, poor placental perfusion, and that I’ve got to be admitted to the hospital right away.”
As Taylor was injected with a drug to help the baby’s lungs develop, the doctors at Sisters Hospital in Buffalo began asking her and her husband whether they had done genetic testing for Downs Syndrome or other congenital defects that often came with that heart condition. They told the parents the baby may not cry when delivered, that she would need to spend time in the Neonatal Intensive Care Unit, but that Dan and Ryann may not be able to see her before she had to be placed under their care.
“We didn’t know what to expect,” Taylor said.
Two days later, Brynn was born via caesarean section at 2 pounds, 13 ounces. She cried, and Ryann was able to hold her for “three seconds,” give her a kiss on the head, and send her off to the NICU.
“They said she would have to have surgery, but because she was such a little nugget, they had to get her up to 5 pounds,” Taylor explained. The baby had been born with Tetralogy of Fallot, a rare heart defect that affects five out of 10,000 babies. Since it is so rare, no surgeon in Buffalo could take care of Brynn, so the family had two options: a hospital in Pittsburgh or Rochester.
They chose Golisano Children’s Hospital in Rochester, an hour and a half away from home. After six weeks gaining weight at Sister’s, the Taylors moved into the Ronald McDonald House at Golisano, where they would stay for 91 days.
“She’s a little prankster,” Ryann Taylor said about her daughter. “When she was supposed to have the surgery the first time, she ended up with pneuomia and had to be intubated. She was all prepped for surgery, everything was all ready, and she stopped breathing. The surgeon said that if they hadn’t caught it before they put the graft in, it would have spread and she would have died.”
After two weeks of antibiotics, Brynn had a patch placed on the hole in her heart, at 2 months old. Everything was going well, the parents saw her, and went back upstairs for some dinner and much-needed rest.
“I just remember that I was sitting in the waiting room with my parents and my husband when they told us she had gone into cardiac arrhythmia and I just stood up and we started running,” Taylor said. “There were about 15-20 people around Brynn’s bed, and her chest was open. How many mothers can say they’ve seen their daughter’s heart? And they’ve got this plastic wrap-type stuff over it, and they basically turned her ICU room into an [Operating Room]. It was incredible.”
The doctors at Galisano had to keep Brynn’s chest cavity open until she was stabilized, and she went back into cardiac arrest later that night. A doctor gave her manual compressions, to keep the baby alive.
“The doctor had his big hand on her tiny little heart, keeping it pumping,” Ryann Taylor said.
They put Brynn on an Extracorporeal Membrane Oxygenation Machine, which would remove her blood, oxygenate it and return it to her body, to keep both her lungs and heart working.
“They had to put her in a medically induced coma for five days to give her little body a break and let the machine do its work, and once a day, they’d have to lift it to make sure she wasn’t brain dead. So once a day, they’d go in and basically wait for her to twitch. It was terrible.”
After six days and several transfusions, the baby came off the machine. But the journey wasn’t over for the Taylors. Brynn came down with pneumonia again after another blood transfusion and had to be intubated for two months.
“The goal became to get her home for my birthday,” Taylor said. “April 19. It would be the best birthday present.” But three days before that deadline, one of the wires that had been used to close the wound started to grow out of Brynn’s chest, similar to the way the skin will reject a wooden splinter. The wire had to be surgically removed, the site got infected, and she was back in recovery, again.
“Our next goal was Mother’s Day. And we just celebrated our one-year anniversary home from the hospital on May 6,” Ryann Taylor said.
Because Brynn was intubated and on breathing machines for so long, she never developed the innate sucking reflex most babies do, so she had trouble eating, vomiting and gagging, even with a feeding tube in her nose.
“She would cough it out, pull on it and we’d have to reinsert it,” Taylor said. “It was awful. You feel like you’re torturing your child.”
After a gastrostomy tube inserted in July didn’t help, the Taylors went back to Galisano for an endoscopy, during which the doctors found an esophagal duplication cyst, a growth that was about the size of tangerine taking up 75 percent of her esophagus, pressing on her trachea and her spine.
In January, they went back to Rochester to have it removed, and a biopsy showed that growth was benign. Brynn is still struggling with eating, and the family has taken her to a specialist in Cinncinatti to seek answers, but Ryann Taylor said her progress is good, all things considered.
“I can’t say enough good things about the doctors and staff at Galisano,” she said. “It’s been a long 17 months. You don’t realize what a blessing health is.”
Ryann Taylor’s parents live in Cattaraugus, and her mother comes up to help care for Brynn three times a week. Dan’s parents live in Florida, and flew up to be with the family during Brynn’s hospitalization, and Ryann Taylor said she feels blessed to have such a supportive family.
“When you’re in the hospital for four months, you see a lot of other parents who don’t have that,” she said. “I can’t imagine going through this as a single mom, without a family around me. I don’t know how we could have done it. It’s been an emotional rollercoaster, and looking back on it now, it’s hard to believe it even happened.”
Today, Brynn sees a physical therapist, an occupational therapist and a speech and feeding therapist. She now weighs just under 18 pounds, but her mom said she is progressing well, given her early challenges, and has just started to crawl. She will have to have one more heart surgery when she’s older, to close the hole in her heart, but doctors said her cardiac health is good. Because of the intubation, she has some vocal chord paralyzation, which gives her a small, gravelly voice.
“She sounds like a pack-a-day smoker,” Ryann Taylor laughed. “Her first words had better be ‘I’m sorry,’ so we can take her around to all of her doctors. I keep saying that she better be the best-behaved teenager ever.”
Taylor is back to work at Parkview Primary Care in Cheektowaga, after taking a year off to take care of Brynn. Although it was hard at first, she said that it’s good to get a break, to get to come home and see her daughter’s smile.
“She’s our little rock star. We call her Brynnie the Brave,” Taylor said. “She’s been through more than my whole family combined, and she probably won’t remember any of it.”
On May 16, Brynn Taylor was honored as one of five “miracle kids” at Galisano Children’s Hospital’s Celebration of Miracles Luncheon. Ryann Taylor said it was nice to go back and be recognized for all her family went through.
“You never want your child to go through something like that, but it’s nice to have some validation. Like, ‘Yes. You survived this.’
“You meet a lot of other parents, and a lot of them don’t get to go home with their children. I just keep saying, we’re very lucky. You’re making progress. You’re going to be OK.”