Melyssa Perkins was 25 weeks into a healthy pregnancy with her first child when she began to have abdominal pain. She called her local nurse who said she was probably dehydrated, but when water didn’t help and the pain increased, Melyssa and her husband Jamie rushed to nearby Beverly Hospital, where they discovered that she was fully dilated.
“I don’t think I said one word at that point. I was in complete shock,” recalls Melyssa. Two hours after the couple arrived at the hospital, their son Jace was born at 1lb. 12 oz. Beverly Hospital stabilized Jace and arranged for immediate transport to the Neonatal Intensive Care Unit (NICU) at Boston Children’s Hospital.
Typical of a premature baby, Jace needed a ventilator to help him breathe. When he began to breathe on his own just days later, Boston Children’s staff nicknamed him Rock Star. Neonatal nurse practitioner Eileen C. DeWitt explains, “We fondly called Jace a rock star because he fought back from every single event, and his parents never left his side.”
There were many more events to follow his breathing challenges: next up was patent ductus arteriosis (PDA), a small opening in the heart that requires surgery if it doesn’t close on its own. Jace’s opening did close on its own, and he avoided surgery.
Then at three weeks came a brain bleed or intraventricular hemorrhage (IVH), which required surgery to insert a shunt to drain excess fluid from his brain. Melyssa recalls how she felt before surgery: “He was so small that it was hard for me to grasp the idea that something so little could go through surgery. The feeling of helplessness is through the roof. We couldn’t do anything for our baby. The only thing I felt like I could do for him is pump breast milk.”
Jace then developed an unrelated and very serious intestinal infection called necrotizing enterocolitis (NEC). Luckily, his NEC had been caught very early, and Jace pushed on, fully recovering after two weeks of intravenous antibiotics.
With NEC behind him, Jace had another setback a month later. His IVH had progressed to hydrocephalus or the buildup of excess fluid in the brain. Neurosurgeon Benjamin C. Warf, MD, removed the shunt and performed a third ventriculostomy/choroid plexus cauterization (ETV/CPC), where he made a tiny opening inside the brain to allow fluid to escape, and then cauterized the tissue that produces the fluid. Because of the ETV/CPC surgery, Jace has no hardware in his head and therefore fewer potential complications down the road.
These ups and downs of the NICU can be emotionally exhausting for families. Setbacks often follow progress. But every step of the way—both the steps forward and the steps backwards—Melyssa and Jamie found the strength to be there for their son. “I truly believe that Jace’s recovery was in huge part due to his parents’ involvement and complete investment,” says Dewitt. Melyssa remembers,
“I had my moments where I was ok and others where I would just lose it. My husband is very, very positive and never doubted that we would get through this journey together as a family of three. He was really good for me.”
Melyssa also attributes her resilience to the unrelenting support she received from her parents and siblings, as well as the quality of nursing care she received at Boston Children’s. “Eileen and all of the NICU nurses are special people, really special people,” she says. “They told us exactly what was going on, and they never sugarcoated anything, but the way they would say things was very soothing. Every single time we had to leave Jace, we knew he was in good hands.”
On May 10, 2014, Melyssa and Jamie did the March of Dimes’ March for Babies together in honor of Jace, and from there drove directly to Boston Children’s to bring their son home for the first time. After 137 eventful days in the NICU, this rock star made sure that his first morning waking up at home with his family was on May 11—Mother’s Day.
Jace is now 15 months old, 25 pounds and the pride and joy of his large extended family. He had a second ETV at eight months, receives early intervention for motor skill delays, and will need surgery for amblyopia or “lazy eye” at 18 months but is overall doing extremely well. “I look at him and I am so proud of how hard he fought to be here. He has more of a story than I do in all my 38 years of living. People have told me that my son makes them strong when they feel weak. That is amazing.” says Melyssa.