Dying baby gains strength in his parents’ loving arms

May 19, 2009

Cory Milburn, now 2, is an active, energetic toddler today after having graduated from the NICU.

Patti and Mike Milburn’s first miracle was Kyle, conceived with the help of the Strong Fertility Center at the University of Rochester Medical Center. He was just 6 months old when the family’s second miracle journey began. Mike and Patti and their children from previous marriages, Carlyn, age 8, and Mike Jr., now 16, were enjoying bonding with Kyle, when Patti began to show some symptoms of pregnancy. With previous fertility problems, how could this be?

Patti and Mike went to the doctor and were stunned to learn that she was already 17 weeks along. Still adjusting to the idea of another child on the way, Patti’s water broke when she was only 25 weeks along. The doctors hoped to prolong the pregnancy for another 10 weeks to improve the baby’s chances, five days later, on April 29, the baby came anyway. Cory was 15 weeks premature and only 1 pound 8 ounces, a micropreemie. Golisano Children’s Hospital neonatologists whisked him down the hall to the neonatal intensive care unit (NICU). Patti didn’t get to hold her baby boy and her husband didn’t even get to see him.

Cory had what NICU staffers call a “honeymoon period.” Although dangerously early, he was hanging in there. But on May 15, Mike and Patti’s anniversary, the honeymoon was over. Cory was struggling with the ventilator, and his central line, through which he got a cocktail of life-saving medications, began failing. Timothy Stevens, M.D., M.P.H., medical director of the NICU, told the family they were running out of options. They needed to prepare themselves for the possibility that Cory wouldn’t make it.

Stevens gave Cory steroids to help his lungs, and he and a team of specialists worked to get a new central line into Cory. It took five hours and Cory was exhausted and barely holding on.

“I sat in the NICU next to Cory’s bed until midnight, saying, ‘Not today, Cory. Today is not the day to go.’ Cory kept fighting for his life,” Patti said.

The next two weeks were a blur of medical interventions and endless hours in the NICU. Then came June 1. The hospital called at 6 p.m. to tell the Milburns they should come in and say goodbye. It didn’t look like Cory would make it.

“When we walked in, Cory was a purplish-blue color and had a team of doctors and nurses working on him,” Patti said. “I won’t forget Heather (Goetzman, P.N.P.) said, ‘Get right in there and you can talk to him.’ It was the first time we had been able to get that close to him,” Patti said.

Patti leaned in to her baby boy and told him, “You fought hard enough for us, so if you have to go, it’s OK.” She looked around at the nurses and doctors trying to save her son and saw tears in their eyes. The nurses and Sanjiv Amin, M.D., F.A.A.P., a neonatologist in the NICU, suggested Patti and Mike hold their son while still connected to the ventilator. It was the first time they’d been able to do so. He was so tiny and fragile yet so beautiful.

Amin had given Cory additional doses of steroids to see if the medication would help, but he was clear that Cory’s prognosis was grim. Patti and Mike wanted to have Cory baptized, so ahospital chaplain performed the baptism with the nurses and doctors gathered around them. Mike held him and Carlyn caressed his tiny head, saying she didn’t want to let her baby brother go. Kyle was brought in so, one day, he could be told he saw his baby brother. The nursing staff closed their section of the NICU and let the family have a few parting moments with baby Cory.

Amin warned them that, if he survived, Cory would be at risk for significant developmental problems as a result of the aggressive steroid treatment.

“I was thinking it would be like a miracle for him to survive because we exhausted routine treatment options,” Amin said. “He was gradually going down hill. The NICU staff was questioning whether we should prolong the inevitable. But the family wanted to see if a second dose of steroids would help, so we kept him going until we could see the effect of steroids a few hours after administration.”

The Milburns were told they could hold Cory until he passed. Around 11 p.m., the Milburns’ extended family started to leave. They planned to walk in the hospital’s annual Stroll for Strong Kids the next morning no matter what. Patti and Amin kept an eye on Cory’s vitals the whole time they held him, expecting his oxygenation to start to drop off. But miraculously, his vital signs improved. They placed Cory back in his incubator, and his oxygenation gradually improved over the next hour.

From that day on Cory took baby steps to improvement. He endured 21 days of the steroid treatment that the family knew could cause developmental disabilities. Eventually, he was able to breathe on his own and the family could hold him. His older sister, Carlyn, and big brother, Mike, visited. And on Aug. 10, 2007, two days before what would have been his due date, Cory finally got to go home. He was on 11 different medications, but he was home.

At the suggestion of the medical team, Patti and Mike kept Cory isolated from public places and visitors for the rest of his first year of life. Some friends joked that they didn’t believe he existed because they’d never seen him. But on his first birthday, Patti and Mike threw an enormous party in their Spencerport neighborhood, inviting 100 friends and family members to meet precious Cory. He was the star, the Miracle Kid.

A year later, he is an outgoing and healthy child. He has very few developmental effects of the lifesaving steroid treatment he received. He has some trouble with his eyesight from retinopathy of prematurity (ROP), a common problem among preemies. But he’s a walking, talking, gregarious toddler.

Join Cory and his family for Miracle Weekend

Cory and his team of walkers will be at the 13th annual Stroll for Strong Kids and 5K Run, 9 a.m. to 1 p.m. Saturday, May 30, on the Wilson Quad at the University of Rochester. This year’s event is sponsored by M&T Bank. For more information or to sign up for the Stroll or the new 5K this year, please visit www.gchas.org.

The Milburns, along with four other special Miracle Kids and their families, will share their remarkable stories at the annual telethon on 10NBC, live from the Strong Memorial Hospital lobby, 10 a.m. to 1 p.m., and 7 to 11 p.m., Sunday, May 31. The telethon is sponsored by Perkins Restaurants. To make a pledge during the event, please dial (585) 241-KIDS or log on to www.gchas.org.

For Media Inquiries:
Heather Hare
(585) 273-2840
Email Heather Hare

 

 

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