Amazing Grace Inspires Community, Future NICU Room, and Healing Garden
Jennifer Johnson was 18 weeks and five days pregnant when an ultrasound showed something was wrong.
The doctor who ran the ultrasound group called her into his office and broke the news that her baby had a congenital diaphragmatic hernia, or a hole in the diaphragm.
“When I first heard hernia, I thought that it was no biggie,” she recalled. “Then he started talking about some operations and that 50 percent of kids with this don’t survive, but that was too much for me to comprehend. It wasn’t until he said that if the baby survives we’d be in the hospital for months did I think, ‘Oh my God.’ He said, ‘Why don’t you call Vinnie?’”
Monroe County Legislator Vinnie Esposito, who had missed the ultrasound appointment to meet an electrician at home, rushed to be by his wife’s side. The doctor told them their case was beyond his scope of care and that they would eventually need treatment at Golisano Children’s Hospital at the University of Rochester Medical Center.
Once home, Vinnie and Jennifer tried to wrap their heads around the fact that their very busy, very public lives had just completely changed. Vinnie was running for office at the time. Jennifer, a newscaster for 13WHAM News whose belly was expanding in the spotlight, had to field congratulatory remarks, phone calls and e-mails from both co-workers who knew her and viewers who felt like they did. And they had a 1-year-old daughter, Avery, to think about.
Already emotionally and physically exhausted from the situation, they decided to keep the news to themselves.
The couple switched to a high-risk OB/GYN, toured the hospital’s Neonatal Intensive Care Unit (NICU), and learned over the next several ultrasounds that their baby girl’s condition was worse than they had originally thought. The hole in the diaphragm had allowed the intestines, stomach and part of the liver to move into the chest, where her heart and lungs were squished and pushed out of place.
By the time Grace was born, her chances of survival dropped to one in five. She was surviving after her birth with just 20 percent functionality in one lung.
“That’s pretty uncommon,” said Patricia Chess, M.D., a neonatologist at Golisano Children’s Hospital who treated Grace. “We just took it one step at a time and did the best we could. What was going to happen was going to happen—and Grace surprised us all.”
The day after Grace was born, a team of doctors and nurses repaired the hole in her diaphragm and put her organs where they belonged. But within hours, the baby’s lung had collapsed. Vinnie and Jennifer rushed to Grace’s room as quickly as they could.
“A whole team of people were working on her,” said Jennifer. “She was this awful color and seemed lifeless. It was the hardest thing to see.”
They watched for a few minutes before heading to the waiting room, where Dr. Chess approached with an offer to try a tricky procedure that might cause neurodevelopmental issues down the road or might not work at all—or they could just let her go. They had about a minute to make the decision.
“She has proved herself to be a fighter so far,” Vinnie responded, “so if any baby is up to the challenge, it’s her.”
Grace was on heart-lung bypass for about a week, during which her blood had to remain thin enough to race through the tubes that ran from an enormous machine into her neck and heart, but thick enough not to bleed out of her surgical sites. That week, while Avery stayed with relatives, Vinnie and Jennifer stayed at the Ronald McDonald House within the Hospital to be with Grace as much as possible. Within weeks of the bypass, the nub of tissue in the second lung Grace had been born with had grown in size to match the other one.
“Every step along the way, Grace has done as well as she possibly could because she’s tough and the people at that hospital saved her life,” Vinnie said. “I can’t imagine getting better care than we have gotten from this world-class institution.”
Jennifer shook her head in disbelief as she described Dr. Chess as an extremely busy physician, wife, and mother of four who spent countless hours attending to details that had nothing to do with her job description.
“Not only did she take our very medically complicated child and allow her to survive and thrive, but the amount of care and compassion she showed was just unbelievable,” said Jennifer, remembering Grace’s baptism in the NICU. Dr. Chess had slipped Grace’s right arm through one sleeve of a white baptismal gown she’d found, then with steady hands held a prayer shawl over Grace’s body during the entire ceremony, held in a dark room, the only light shining on Grace’s face. She also wrote little notes to Vinnie and Jennifer on behalf of their daughter, with messages such as “I love it when you read stories to me” and “When you sing to me, I promise the staff won’t laugh at you.”
After two-and-a-half months at Golisano Children’s Hospital, where she received oxygen support and medication to help lower her blood pressure while her lungs matured, Grace’s health progressed by leaps and bounds and she was able to go home three months earlier than expected.
Grace—her name was bumped up after her birth from its original position as a middle name—became somewhat of a celebrity after Vinnie and Jennifer filmed a TV segment about their experience for 13WHAM News. People would often refer to her as "Amazing Grace."
Sadly, after a surgery to repair a new hole that formed in her diaphragm, “Amazing Grace” passed away on February 16, 2013. At only 16 months old, Grace touched so many lives. She inspired her family, providers, the community, and other CDH families.
With the help of Rochester-area Kiwanis Clubs, of which Vinnie is the Irondequoit Chapter President, and 13WHAM, Grace’s parents started a fundraising campaign in her honor a few months before her last surgery. The 18 Kiwanis Clubs of the Genesee Division stepped up in an incredible and very personal way by raising $100,000 to name a room in the new hospital in honor of “Amazing Grace.” Jennifer, Vinnie, and the 13WHAM team have also committed to raising $350,000 to name a special healing garden in Grace's name, which will be located on the east side of the new building.
Even though Grace has died, Vinnie and Jennifer continue to feel inspired to give back to the hospital and its providers because of the time they were able to spend with Grace.