A Special Bond

Two days after Lennox Pierce was born, he was flown to N.C. Children's Hospital’s Level IV NICU for lifesaving treatment. Two years later, the Pierces reunited with their providers and other NICU families at Sunday’s Newborn Critical Care Center's graduate reunion.

A Special Bond click to enlarge Carlton J. Zdanski, MD examines Lennox while his mother, Jessica looks on. Photo by Max Englund/UNC Health Care.
A Special Bond click to enlarge Lennox and Jessica Pierce. Photo by Max Englund/UNC Health Care.

by Zach Read - zachary.read@unchealth.unc.edu
photos by Max Englund

Three years ago, Iowa natives Jessica Pierce and her husband, Clinton, moved to Havelock, N.C., in the eastern part of the state. Clinton had joined the Marines, and his orders were to Cherry Point. Together, they were raising three children, ages 1 to 12, and they had just discovered they had a fourth on the way — a son they would name Lennox.

During Jessica’s 20-week ultrasound, the family received difficult news: their doctors in Havelock discovered some significant abnormalities with Lennox. Care had to be transferred to East Carolina University (ECU). Jessica and Clinton were shocked, as all three of their children were completely healthy, and Jessica’s previous pregnancies were comparatively uneventful.

“The providers watched us closely through our entire pregnancy,” says Jessica. “They only gave Lennox a one-percent chance of making it. But he made it, and when he did, they didn’t know what to do – they were lost.”

Lennox was born two years ago, in mid-August. He arrived six weeks early. Without hands and feet, and requiring a tracheostomy tube to breathe and a feeding tube to eat, his immediate needs were complicated. Providers at ECU recommended that the Pierce family receive care in Chapel Hill. Two days after Lennox was born, he was flown to UNC Hospitals while Jessica and Clinton drove to join him and meet his new care team at N.C. Children’s Hospital.

“I’d never heard of the N.C. Children's Hospital, but once Lennox arrived here, we knew he’d make it,” says Jessica. “It was a huge relief just to know they could care for him.”

“I’d never heard of the N.C. Children's Hospital, but once Lennox arrived here, we knew he’d make it,” says Jessica. “It was a huge relief just to know they could care for him.”

From the moment Lennox landed, the Pierces felt something different about the care they were receiving, not only in terms of the level of technical care they witnessed but also in the understanding and attention from their clinicians.

“It was the first time since he was born that anyone congratulated us,” remembers Jessica.

Finding out more about Lennox’s unique condition was a challenge. The family worked with Arthur Aylsworth, MD, professor of pediatrics and genetics at UNC, to discover why Lennox had these complications. Dr. Aylsworth pinpointed it as a rare condition called the oromandibular-limb hypogenesis syndrome (OLHS).

OLHS includes abnormalities in hand and foot development along with craniofacial features such as Moebius sequence, a rare neurological disorder of the cranial nerves that affects facial and eye movements. According to the National Institutes of Health (NIH), one in 50,000 to one in 500,000 newborns are diagnosed with Moebius sequence. The combination with other findings is even rarer and usually occurs in families with no history of birth defects.

During the first two months of Lennox’s care, he stayed in the Newborn Critical Care Center (NCCC) at the Children’s Hospital. Jessica remembers the stress of the first several weeks of Lennox’s care particularly well.

“There was a point where all I could hear were the alarms – the monitors going off, his heart rate, his breathing,” says Jessica. “It was scary. But we knew that if anyone could save him, it would be UNC.”

With three other children at home nearly three hours away, Jessica and Clinton returned to Havelock, but they, along with Lennox’s siblings, traveled to Chapel Hill every Thursday. The family stayed at the Ronald McDonald House, where they received hot meals, access to computers so the kids could do their homework, and a free place to stay while they spent time with Lennox and interacted with his various care teams. If the kids had a break from school, the family remained in Chapel Hill longer, including one stretch of three weeks.

“Other mothers were experiencing similar things,” says Jessica. “If I wasn’t here one day, a mom would call me and tell me that she checked in on him and reassure me that he was doing fine. And I’d do the same. It was a special bond.”

Jessica is grateful for the people she met during that period, particularly the families who were also going through challenging early life stages.

“Other mothers were experiencing similar things,” says Jessica. “If I wasn’t here one day, a mom would call me and tell me that she checked in on him and reassure me that he was doing fine. And I’d do the same. It was a special bond.”

As with so many other families, the NCCC at UNC became a second home for Lennox and the Pierces. Returning to Havelock each Sunday -- leaving Lennox's side -- wasn’t easy, but because of the level of care they were receiving, the Pierces felt a sense of relief.

“We could go home and sleep at night,” says Jessica. “We could leave on Sundays knowing he would be here when we came back on Thursday. And any time we had questions or concerns we’d just call. The nurses became like family.”

Last weekend, along with 300 other families, the Pierces attended the NCCC’s Graduate Reunion at the Friday Center in Chapel Hill. Held every two years, the circus-themed event celebrates the successes of former patients and gives their families an opportunity to reconnect with their caregivers and fellow graduate families. 

“We couldn't wait for the event,” says Jessica. “The others who were there relate to what we’ve been through. They’ve been there. That’s what’s so great about the event – the bond that you have with them.”

Jessica also couldn’t wait to show how much Lennox has progressed since his early days at UNC. Today, he’s learning to walk with prosthetic legs and to use prosthetic arms. With the help of a walker, he’s even beginning to take steps on his own, and he’s stacking blocks and pushing toy cars.

His Facebook page, Limbs for Lennox, documents his journey with his family. Lennox’s care requires involvement from many specialists. Jessica estimates that more than 100 UNC doctors and nurses have worked with Lennox during the past two years, ranging from specialists in pulmonary, ENT, plastic surgery, pediatric surgery, dental, craniofacial, speech, PT/OT, ophthalmology, audiology, prosthetics, and genetics.

The Pierces have found steady care closer to home and have less frequent visits to the Children’s Hospital, which now occur every four to six months, but Jessica loves every return trip she and Lennox make to Chapel Hill.

“They care about Lennox,” Jessica says about his UNC providers. “When we’re out in public, people stare and have questions and even can be mean. When we come here, on the other hand, it’s like our safe zone. When we come here, Lennox is so normal.”

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