Megan Ayles was 22 weeks pregnant with her first child when she went to the hospital near her home in Gates, for the second time, because of cramping. After being told her cervix was dilated, she was instructed not to sit up – to keep her water from breaking – while plans were made to rush her to UR Medicine’s Strong Memorial Hospital to the high-risk obstetrical unit.
Over the next two days, Megan and her husband, Jason, talked with doctors, listened to sobering statistics (their son, whom they’d named Chase, had a 25 percent chance of survival), and tried to decide how they wanted to deliver their baby. With a vaginal delivery, there was a small chance that even though his body might deliver easily, his head – which at that age was wider than his shoulders – might get stuck. A Caesarean section, however, could pose a high risk of bleeding for Megan and cause potential infertility issues in the future.
“It was a really difficult, really scary time,” said Megan, who received three ultrasounds and medication to delay the onset of full labor for at least the 48 hours she was receiving steroids to help Chase’s lungs mature. “I just kept saying, ‘Is this really happening to us?’ and my husband was very emotional thinking he could lose us both. All we could do was cry.”
Knowing Chase’s arrival was imminent, and after a lot of prayer, they ultimately chose a vaginal delivery. Megan says “a very peaceful, beautiful birth” preceded a tortuously tense wait to learn whether their son, who’d immediately been whisked down the hall to Golisano Children’s Hospital’sNeonatal Intensive Care Unit, not only survived the first few minutes but weighed at least 500 grams – the size usually required to insert a ventilator tube.
The news was good: Chase, who could have fit in his father’s hands, weighed 615 grams, a good size for a 23-week-old baby.
But he would have a long road ahead. Chase’s lungs, heart, gastrointestinal tract, and digestive system were highly immature, which resulted in various complications, including blood infections and an inability to tolerate even 1cc of breast milk every hour – one-fifth the amount in a teaspoon. Though treated for the infections and given nutrition intravenously, his blood pressure remained dangerously low despite medication and he had circulation issues that caused concern about toe loss. He was put on two types of high-frequency ventilators to balance oxygen and carbon dioxide levels.
Then, as commonly happens with babies born at 23 weeks, he developed a bleed in his brain. “Fortunately, it was a relatively minor bleed, just in the ventricles and not in the brain tissue,” said Ronnie Guillet, M.D., Ph.D., a neonatologist at Golisano Children’s Hospital. The bleed has gradually improved on its own and is being followed with ultrasounds.
“We’d get over one hurdle, and the next day would bring another one to jump over,” Megan recalled. “But there were little things we could do to at least let him know who we are. We could put our hands in the incubator. He would grasp them, and his tiny fingers would just cover our nails.”
Jason coped by celebrating small milestones along the way. He vividly remembers the moment his son, who was born with his eyes fused shut, looked at him for the first time. Chase was 2 ½ weeks old. “I felt this overwhelming sense of love and hope for him,” he said, “and knew I would do anything and everything to make sure he felt comforted and loved no matter what experience we were going through as a family.”
Meanwhile, another major decision had to be made. Chase was born with patent ductus arteriosus, or PDA, a condition in which the pathway between the pulmonary and aortic arteries remain open, causing the blood to mix and too much blood to flow to the lungs, and increasing the chance for congestive heart failure.
“His parents and I talked a long time about how sick he was, and whether it would be in his best interest to go ahead and have surgery to close his duct,” Guillet said. “We decided it was definitely worth the risk.”
At 3 weeks old, weighing 1 pound 10 ounces, Chase underwent the delicate surgery without complication. He was discharged from the hospital five months after birth, about a month after his original due date.
He has done well in terms of growth, doubling his weight – to nearly 13 pounds – in the first three months at home, and is a happy child who loves to eat, be held, and listen to “anything that makes noise,” according to Megan. She and Jason are working with Chase on several developmental milestones, given that it might take him until age two to catch up with his peers in certain areas.
In the meantime, Chase has a team of specialists committed to his continued progress. He has a monthly visit with a pulmonary nurse practitioner for bronchopulmonary displaysia, a disease that causes inflammation and scarring in the lungs and is common in extremely premature babies who need to be on a ventilator. He sees a gastroenterologist every month or two to make sure he’s digesting his breast milk and formula and growing appropriately. He’ll undergo cognitive and developmental assessments at Golisano Children’s Hospital’s Kirch Development Services Center every six months until his second birthday. Every four months, he will need to be evaluated by an ophthalmologist, to monitor for retinopathy of prematurity, an eye disease that often affects premature babies born before their retinas are fully developed, and to see if he needs glasses, another common need in premature babies. And he will be checking in occasionally with a cardiologist.
“We’ll support Golisano in any way we can, but we’ll never be able to give back enough,” Megan said. “Those doctors and nurses literally were family to us. Every day, they made it seem like Chase was their only case, and wrapped us with love. We could never ask for better care.”
A little fighter, Chase 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 Chase and his 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.