Baby Collier Proves He's a Survivor
His brown eyes impish, Collier Hart sits smiling in his crib repeatedly saying, “Wa wa.” Given a sippy cup of water, he throws back his head and drains it. Next, he puts his hands together, fingertips touching, and makes the sign for “more.”
The scene would be nothing extraordinary for most 2-year-olds, but it is miraculous for Collier, a child who spent the first 15 months of his life at Duke Children’s after he was born with severely underdeveloped lungs.
“Here’s a kid, all the odds were against him,” says William Malcolm, MD, medical director of Dukes’ Special Infant Care Clinic, as he blinks away tears. “He’s thriving, and the reasons he’s thriving are his parents, the amount of services we were able to provide here at Duke, and obviously, Collier himself. You get emotional about outcomes like this.”
Surrounded by Love, Ready to Fight
Before Collier was born, tests at Duke Children’s showed the baby’s lungs were compromised, and when Natalie Hart went into premature labor, the neonatology team was ready.
On July 3, 2014, Collier arrived at 32 weeks weighing 4 pounds, 3 ounces — and crying. No one had expected him to be able to cry. Natalie and husband Eric Hart were ecstatic even as their new baby was whisked away to be intubated.
Collier had pulmonary hypoplasia, or a severe underdevelopment of the lungs. “They were stiff and couldn’t expand, even with us giving him surfactant and putting him on a ventilator,” Malcolm says. “His heart had to pump extra hard to put blood in there to be oxygenated, so he developed pulmonary hypertension.”
After more than six months, Collier was not improving. He remained on the ventilator, had a feeding tube, and was on painkillers and sedatives.
“Painkillers and more painkillers, just this whole cocktail of different medicines he was on,” says Natalie. “Doctors were talking about him possibly having infant delirium. He was out of it, shaking his head a lot. His condition just wasn’t getting better.”
Many times, Malcolm says, doctors weren’t sure Collier would survive.
“We wondered, first of all, was it the right thing to continue to push on with the medications we had for his lungs and for his heart,” Malcolm says. “That’s always a question, an ethical question, if we keep pushing, what will his outcome be? And the second question is, will he respond?”
The Harts made the wrenching decision to sign a Do Not Resuscitate order for their boy because the dangers of CPR were just too great. They asked how much time Collier might have left. Maybe weeks, they were told. Family members arrived from out of town to spend time with the baby. They conducted a baptism.
But then, as Eric describes it, the doctors at Duke had a few more tricks up their sleeves.
A Watershed Moment
The turning point was risperidone, an antipsychotic medication not approved for use in children.
Because Duke is a clinical research site for the NICHD Neonatal Research Network and the Pediatric Trials Network, however, the hospital is at the forefront of researching new therapies for babies that involve using medicines off-label.
A pediatric psychiatrist prescribed the drug to help with Collier’s delirium, and his response was remarkable. One by one, the painkillers and sedatives were removed. By early April, Collier was sitting propped up and laughing.
He improved enough that doctors started talking about a tracheostomy so the painful tube down his throat could be removed. The ensuing surgery gave Collier a hole in his windpipe for ventilation, but it also gave his parents two gifts:
For the first time, Natalie and Eric could see their baby’s face, just his beautiful face, without tubes, or masks, or tape.
And, for the first time, someone mentioned working toward a release date.
Collier, however, was still taking medicines that usually are prescribed only for hospitalized children, and he wasn’t gaining enough weight. A May release date turned to June and June to July.
On July 3, Collier celebrated his first birthday at the hospital with a fish-themed party. Only one or two children a year stay at Duke Children’s Intensive Care Nursery that long.
Finally, on September 23, 2015, the Harts were headed home to Burlington, North Carolina, with their boy.
Typical Toddler, Remarkable Outcome
Since Collier’s release from Duke Children’s, he has been readmitted to the hospital only three times, a return rate that Malcolm calls astonishing. The doctor credits the Harts’ diligence and the hospital’s Transitions Medical Home Program.
The program, unique to Duke, gives pager access to parents of high-risk infants so they have 24-7 access to the doctors who took care of their babies prior to discharge. If parents think a child is in trouble, they can page a familiar doctor and get advice, which cuts down on unnecessary emergency visits and hospitalizations, Malcolm says.
Babies with feeding tubes or heart monitors who previously would have had to remain hospitalized can go home, where they have a much better opportunity to thrive, he says.
As Collier has.
Malcolm has high hopes that Collier can be weaned from ventilation as he gets stronger and as his lungs further develop. The baby is now eating some things by mouth, and the doctor predicts the end of his feeding tube by next year. Collier, who also was born with a club foot and leg contractures, is crawling, using a walker and pushing himself around in a wheelchair.
Malcolm says he is proud of Collier’s medical outcome, but even more so his developmental outcome. “The fact that he’s thriving in so many ways, that he’s progressing as you would expect any child to despite being in the intensive care nursery for a year. He’s an example of a success story that wouldn’t happen in most children’s hospitals across the country.”
On Collier’s bedroom wall is a list of the words — puzzle, book, cat, toy, baby, water — that he can say or sign. His favorite book, a well-worn copy of Chicka Chicka Boom Boom, sits among the air tanks and diapers. His favorite pastime, on this day, is teasing his daddy.
“Say Dada,” Eric says as the two sit on a play rug. “Say Dada. Say Dada.”
Collier cocks his head and flashes his dad a mischievous look.
“Mama,” he says, nearly falling over as he cackles.
Just as any toddler would.
By Burgetta Wheeler
August 23, 2018
On Collier’s bedroom wall is a list of the words — puzzle, book, cat, toy, baby, water — that he can say or sign. His favorite book, a well-worn copy of Chicka Chicka Boom Boom, sits among the air tanks and diapers. His favorite pastime, on this day, is teasing his daddy.
“Say Dada,” Eric says as the two sit on a play rug. “Say Dada. Say Dada.”
Collier cocks his head and flashes his dad a mischievous look.
“Mama,” he says, nearly falling over as he cackles.
Just as any toddler would.