New York triplets get same surgery for rare skull condition

"We were freaking out," said their father, Mike Howard.

ByABC News
May 2, 2017, 6:41 PM

— -- Three New York infants are recovering after undergoing the same surgery to treat a rare birth defect that affected their skulls.

Last October Amy and Mike Howard welcomed their three sons Hunter, Jackson and Kaden. While Hunter and Jackson are identical, Kaden is fraternal.

Soon after the infants were born, doctors noticed that something looked wrong with their skulls: they appeared misshapen or pinched. It was a classic sign of a rare birth defect called craniosynostosis.

"After they were born you could tell that their heads were a little bit malformed, deformed," Amy Howard told reporters Monday.

The defect is characterized by a premature fusing of the skull that can be dangerous for infants, who grow quickly. Without flexible spots in the skull that allow the brain to expand, an infant with craniosynostosis is at risk for intracranial pressure and developmental delays, according to the National Institutes of Health.

"It can cause consequences to the brain by increasing pressure inside their heads," Dr. David Chesler assistant professor of neurosurgery at Stony Brook Medicine, told ABC News affiliate WABC-TV.

Doctors at Stony Brook Children's Hospital determined Hunter and Jackson both had a version called sagittal synostosis, where the top of the skull is fused which results in a long, narrow skull, according to the Mayo Clinic.

Kaden had a less common version called metopic synostosis where the front of the skull is fused giving the forehead a pinched look.

"We were freaking out," Mike Howard told reporters Monday of the experience. "But Stony Brook they were so amazing."

Approximately 1 out of every 2,100 babies are born with the condition, according to hospital officials. However, after reviewing medical literature, Chesler found this may actually be the first time triplets were all diagnosed with the condition. He estimates the odds of this happening are around "1 in a couple hundred trillion."

"You'd sooner get struck by lightening or win Powerball by a long shot over this," he told ABC News.

To fix the problem, Chesler and other staff had to remove part of the skull from each infant via surgery last January so that no pressure would build within the skull and harm the brain. Because the boys were so small the team was able to do the procedure endoscopically. This minimally invasive procedure involved small incisions through which they remove the strip of bone where the skull is fused, according to Chesler. He explained doing an endoscopic procedure requires much less time in the operating room about 90 minutes to three hours compared to a traditional open-skull operation which can take between three to eight hours. The recovery time is also much shorter and the infants are less likely to need a blood transfusion.

"The risks of the operation by and large are less than the open operation and the outcomes are just as good," Chesler explained. The infants have to keep a helmet on for at least six months to keep the skull in the correct shape and to stop it from refusing.

Now the triplets are recovering at home and meeting their development milestones four months after their surgery, according to Stony Brook Children's Hospital. The only sign that the boys had surgery on their skulls is the large plastic helmets they still need to wear. They're expected to be done with those helmets in a few months.

"The boys are doing awesome, they're really doing well," Chesler told ABC News.