Micro Preemie Proves a Feisty Little Fighter
Wednesday, May 09, 2007
We were told that there was a 50 percent chance of survival, and an 80 percent chance that he’d suffer severe disabilities. I’ll never forget those numbers
In January 2005, Carole Woodlock and her husband, Peter Byrne, gave birth to their son Jude when he was just more than 24 weeks along in the pregnancy.
“We were told that there was a 50 percent chance of survival, and an 80 percent chance that he’d suffer severe disabilities,” Woodlock said. “I’ll never forget those numbers.”
Woodlock, who was suffering from the sudden onset of complications related to H.E.L.L.P. syndrome,a rare obstetric complication, struggled to stave off labor to give Jude even just one more protective day in the womb. Bed-rest and courses of steroids only bought hours.
Soon, it became absolutely necessary to deliver Jude, who was four months early and at 11 inches long, weighed only 1 pound. He tried to breathe on his own, and made a tiny cry.
“The nurses and doctors were stunned; it’s a rare feat that a baby so small even attempts to cry,” Woodlock said. “Right away, we knew he was a feisty little guy that was willing to fight.”
They couldn’t have been more right. Jude proved to be spirited alright – he preferred to be positioned certain ways, and kept setting off monitor alarms, testing the nurses again and again.
“But they were so good-natured about it, and made a game of it,” Woodlock said.
After a whole week, the parents could finally touch their son; though his skin was still translucent and he looked too delicate to handle, NICU nurse Val Roach assured the couple that they could – and should – touch him.
“He needed us to, Val said. Jude looked fragile, but craved our touch,” Woodlock said.
When Jude was 6 weeks old, his parents could hold him outside the incubator. Woodlock and Byrne were thrilled to begin connecting with their son through skin-to-skin holding and the daily feeding and changing regimes.
Roach continued to prove a stalwart advocate for the family, and for the couple being involved in the critical decisions about Jude’s care.
“When you first come to the NICU, it’s intimidating; the medical language can be absolutely foreign,” Woodlock recalled. “But our nurses, especially Val, and our doctors made sure to empower us. They explained everything and took time to educate us so that we could make informed choices. They also reminded us that with any NICU baby’s journey, there would be peaks and valleys, and that it’s important to not get too caught up in either, but to ride it through.”
Jude did traverse those valleys. In his second week, he turned stone-grey, and came very near to stopping breathing altogether. He was able to be revived.
He also couldn’t take breast milk until he was 6 weeks old, and consequently, had trouble gaining weight and strength through the IV nutrition alone.
And, after phasing off his breathing devices until he needed less and less help (at 12 weeks, finally breathing on his own), there came the daunting question of whether or not he should have eye surgery to fuse his retinas, which typically only start to develop during the last couple of weeks of pregnancy. Surgery would save him from being blind altogether, but the cost was giving him only limited vision.
“As parents, we had hopes that his vision might improve on his own, and dreaded making that big, limitary decision. We wanted to give Jude some more time,” Woodlock said.
That blend of all opinions – theirs, and that of the physicians and the nurses – was the best way to make decisions, Woodlock said. Nurses like Roach kept reminding them that as parents, they knew their child better than anyone else.
“Carol and her husband took advantage of our NICU’s longtime emphasis on family-centered care,” said Gloria Pryhuber, M.D., who specializes in acute and chronic lung diseases in preemies like Jude. “Carol was always thinking, ‘what about this, and what about that?’ She was clearly Jude’s advocate.”
The time came where Jude, at 3.5 pounds and after a 100-plus day stay, was strong enough to head home. Miraculously, his vision did improve with assistance of an early
intervention vision specialist.
Today, it is perfect.
“Carol and Peter spent so many hours spent at Jude’s bedside – waiting, talking to Jude, encouraging him, enduring the tough times when things weren’t going so well and celebrating the successes as they came,” said Tim Stevens, M.D., M.P.H., the NICU’s medical director. “Jude’s health is a miracle we’ll share with the Byrne family forever.”
Today, Jude jumps, runs and is extremely active. “He and his brother Brendan are great buddies, and they read and play together,” Woodlock said. “He still receives speech therapy, and still battles some sensory issues, but there are none of the looming challenges we were so worried about.”
Roach, known to Jude and his family as “Auntie Val,” is now Jude’s honorary godmother.
Jude, along with four other Miracle Kids and their families, will be honored at Golisano Children’s Hospital at Strong’s annual Miracle Luncheon, to be held at noon Friday, May 11 in the Lilac Ballroom at the Rochester Riverside Convention Center.
Miracle Weekend highlights
Cheering on the 2007 Miracle Kids and celebrating their victories is just part of the festivity planned for Miracle Weekend, to be held Saturday and Sunday, June 2 and 3. The weekend includes two time-honored fundraising events that support the region’s only children’s hospital — the 24th annual Children’s Miracle Network telethon and 11th annual Stroll for Strong Kids.
Children’s Miracle Network Telethon
This year’s telethon, produced by 10NBC, will broadcast live from the Strong Memorial Hospital Lobby, 4 to 8 p.m. Saturday, June 2, and 7 to 10 p.m. Sunday, June 3. Viewers can expect stories of bravery, medical miracles and the power of family, and can help the hospital by phoning in gifts to (585) 241-KIDS (number is only operational during the event).
Stroll for Strong Kids
This year’s 11th annual Stroll for Strong Kids brings a beach party theme and plenty of family fun, including clowns, inflatable toys, raffles, door prizes, free lunch courtesy of Subway and a concert by Gary the Happy Pirate. Festivities begin with registration at 9 a.m. on Saturday, June 2. For more information on how you or a team of friends can be involved, please call (585) 273-5948 or visit www.gchas.org.