Surprises. When it comes to the health of our children, nobody likes surprises, but Dr. Brian Ghere and his wife Dr. Mary Catherine Ghere, noticed that their son Rhett’s skull was still misshapen several months after his birth.
“Mama diagnosed it,” Brian says with a mix of pride and relief.
After a visit with members of the cleft and craniofacial team at Children’s Hospital of New Orleans, Rhett’s diagnosis was confirmed. He was suffering from craniosynostosis, a rare disorder affecting the development of a child’s skull.
Diagnosing craniosynostosis often requires the trained eye of a surgeon. If identified in the first few months of life, as it was with Rhett’s sister, Josie, born two years later, a minimally-invasive procedure may be used to correct the condition. But even children like Rhett, who was a little bit older when he had the same surgery, see good results.
It all depends on the parents, and the Gheres made their son’s care an absolute priority.
“It was a scary situation, but today all of our children are happy and healthy and we couldn’t be more pleased with our experience at Children’s.”
Diagnosing Craniosynostosis
Mary Catherine, a plastic surgeon currently completing her fellowship training at the University of Mississippi Medical Center in Jackson, knew to be suspicious when, several weeks after his birth, Rhett’s head had not assumed a more normal shape.
His head was narrow side-to-side and elongated front-to-back, as Brian recalls. “Initially, the doctors were thinking what we were thinking: he had a difficult birth and we thought that’s what had misshapen his head.”
Read more about craniosynostosis in Infants
Craniosynostosis reveals itself only as a child’s brain begins to grow.
At birth, our skulls are actually made up of several sections of bone, connected by strong, elastic tissues called sutures. As we grow up, those sutures ossify and become solid bone. In very rare instances—one in every 2000 to 3000 babies—the sutures ossify prematurely, which can “squeeze” the brain.
That is what was happening to poor baby Rhett.
Caring for a Child with Craniosynostosis
Brian is a small animal veterinarian, his wife a surgeon, but even with all their combined training, it was a trying time for the Ghere family. “It’s a scary concept for Dad to know that your very young infant is going to have surgery to cut into the skull bone.”
The first thing they did was Google; the next step was to talk to others who had similar experiences.
“You can read up on it—the jargon is the toughest thing—but to talk to another human being who’s gone through it before and after, that was the most comforting thing.”
Generally, if diagnosed early, a minimally-invasive surgery will allow a craniofacial plastic surgeon to separate the bones as is natural. Thereafter, a specialized helmet protects the wound and helps direct the developing shape of the child’s skull.
This is where the parents come in:
“It takes attention and dedication to raise any child,” Brian says. “It is work. When it comes to post-surgical care and the helmet, you have to stay on top of things, do your follow ups, pay attention, and make it a priority.”
Helmet Therapy for Craniosynostosis
When it comes to fitting Rhett’s helmet, the Gheres were pleased to find that Children’s Hospital in New Orleans has an entire team devoted to the process.
“It was pretty impressive,” Brian recalls. “They use a hand-scanning tool and put a little computer-responsive cap on your kid’s head. You can see every ripple and divot on the 3D digital scan they send off to the manufacturer.”
Rhett’s deformity was fairly severe, and he would wind up wearing a helmet for eighteen months. Brian smiles, “He was able to articulate and fuss and move around. He was a little more self-willed, but eventually he got used to it and we got through it just fine.”
Rhett wound up needing three different helmets during the course of his treatment, and Mom and Dad had to be vigilant at all times.
“You have to check the helmet several times a day, but it was all very manageable. Summers in New Orleans, he might get sweaty under the helmet. You keep an eye out for red spots and sore spots. And as your child grows, you get the helmet tweaked when it needs tweaking.”
The people at Children’s Hospital of New Orleans were always available to help: “They were awesome,” Brian says. “Nice, good with the kids, easy to deal with. If you have any issues, you call them.”
“When in doubt, check it out.”
A Typical Boy (and a Good Big Brother)
When little Josie Ghere was born a couple years after her brother, Mary Catherine knew to be suspicious when again, very early on, she noticed something unusual in the shape of her child’s skull. A return to Children’s Hospital confirmed her good instincts.
Dr. Hugo St. Hilaire, the craniofacial plastic surgeon who had performed Rhett’s surgery, was the surefire go-to. “He is a fantastic guy and a great surgeon,” Brian confirms, “And Mary Ellen at Children’s was easy to work with getting it scheduled.”
The Ghere children now live in Jackson, Mississippi with their mother. Brian joins them there on Friday after he’s closed his veterinary practice for the week. Rhett is doing fine, Josie is doing fine, and you would never know what the Gheres went through to earn this uneventful Saturday all together.
“Kids,” Brian muses. “They all think they are indestructible, but now he’s a typical boy, stubbing his toes and running into things.”
“You just have to adjust your priorities when you get a surprise like that. No sense complaining. You do what you’ve got do and move on, and so that’s what we did.”