Posted at: 05/30/2012 2:53 PM
Updated at: 05/30/2012 4:53 PM
By: Nikki Rudd
One of our former colleagues, Jennifer Johnson, got some news one year ago that no parent ever wants to hear.
Doctors told Jennifer and her husband Vinnie that their unborn child had a less than 25-percent chance of survival. Even if the baby survived, it would spend months in the hospital and face multiple operations.
Grace Elizabeth Esposito is now eight months old and is no doubt a miracle. That's why she was chosen as a miracle kid for the Children's Miracle Network Telethon this weekend benefiting Golisano Children's Hospital.
Jennifer and Vinnie’s lives changed one year ago when they found out their unborn baby had a congenital diaphragmatic hernia. Vinnie Esposito said, “Everything changed from that point on. We had a lot more appointments and consults and stuff to learn about what we were going to be facing.”
Basically, Grace's diaphragm didn't form normally, allowing her abdominal organs to push up where her lungs and heart should have been.
Doctors told them about 50-percent of babies with this condition survive. Johnson said, “And that's when I went, ‘Wow…life's changed, life's changed a lot.’”
Then more bad news -- Grace's case was severe.
Dr. Patricia Chess cared for Grace from the moment she was born. “The expectation was that Grace would not survive. She had a four in five chance of not surviving.”
Jennifer and Vinnie had some tough decisions to make. They went for a second opinion at the Children's Hospital of Philadelphia -- one of the world leaders in Grace's condition.
Esposito said, “And they told us point blank that her condition is so severe that we should go there and that's the place that she'd have the best chance of surviving.”
After careful consideration, they realized Golisano Children's Hospital in Rochester had everything they needed to handle this complicated case.
And it was here where Grace's story would begin.
Grace was born with just 20-percent of one lung. Johnson said, “Somehow she was getting amazing oxygen circulation throughout her body. Doctors to this day can't explain how they were getting the readings they were getting.”
It would be weeks before Jennifer could hold Grace and the very next day they received bad news. Johnson said, “We got a knock on the door and said, ‘It's not good, you need to come down to the NICU because we need to make some decisions.’ We walked down there and it was awful. She looked lifeless to me. The doctor said you have a choice to make. We can let her go and let her go peacefully because she's in a really rough state right now or we can try ECHMO.”
ECHMO is a heart and lung bypass. Jennifer and Vinnie had a minute to make a choice and they decided to go for it – to give Grace a chance at life. Johnson said, “It was one of the longest few hours of my life because we literally didn't know if she was dead or alive, having seen what we saw, in my mind there was a really good chance she wasn't alive.”
Doctors turned the NICU into an operating room and the ECHMO worked, but it was very risky.
For a week they lived in limbo, not knowing if she'd survive. The next hurdle was coming off the ECHMO.
“When they finally came out and said she survived, it was amazing, “Johnson said.”
“She had three surgeries in her first nine days. She was on ECHMO after that for even days,” Esposito said. “She was there two and a half months in total.”
There's no doubt Jennifer and Vinnie believe Grace is a miracle but how about a medical perspective?
Dr. Chess said, “She truly is a miracle. She's here not just because of the medical team but a lot of prayers on her family's part.”
Now Grace just goes to the hospital for visits and she's been winning over the hearts of everyone.”
“I often say that Grace is a miracle kid and has survived because one -- she's just a tough little girl and two -- she's had a lot of prayers from a lot of families and friends from all over the world, and three -- she had a great medical team at Golisano Children's Hospital.”
Dr. Chess said. “My thought is I will be seeing her go to college and I’m very excited to see that day come.”
“Compared to where she could be -- we're at an amazing place,” Johnson said.
You can meet all our Miracle Kids this Sunday during the Miracle Network Telethon for Golisano Children’s Hospital.
The telethon airs on News10NBC from 10 a.m. to 1 p.m. and from 6:30 p.m. to 11 p.m.