Triplets born with rare cranial condition ‘thriving’ at 1

The Long Island triplets who made medical history earlier this year after having been born with a rare cranial condition are thriving and meeting their developmental milestones, their parents say.

Hunter, Jackson and Kaden, now 13 months old, arrived in the world with a disorder broadly known as craniosynostosis, which is marked by a distorted growth pattern of the skull, their parents, Michael and Amy Howard of Center Moriches, said.

Left uncorrected, a malformed cranium can prevent optimal brain development, possibly leading to developmental delays, cognitive impairment, eye movement disorders and seizures.

None of those problems face the triplets now.

“They’re thriving — and their heads look amazing,” said Michael Howard, recalling the contours of his sons’ heads as newborns.

In January, the boys underwent minimally invasive corrective surgery at Stony Brook Children’s Hospital, and for months afterward wore clear plastic helmets to help reshape their heads. Hunter and Jackson were freed from their helmets over the summer. Kaden wore his until October, their mother said.

Now, Amy Howard acknowledges loving nothing more than eavesdropping on her toddlers, who, while in their room, laugh and chat animatedly in lengthy conversations conducted entirely in “baby talk.”

“They are getting so big. They’re running all over the place and getting into everything,” Amy Howard said. “Kaden won’t stay in the playpen. He’s always climbing out.”

Craniosynostosis, which has multiple forms, can occur when one or more of the skull’s seven plates — bones — fuse too early during fetal development. The bones are held together by tough, fibrous joints called sutures.

The boys’ pediatric neurosurgeon, Dr. David Chesler, said what made their situation rare was that all three were born with the condition.

Earlier this year, Chesler and Dr. Elliot Duboys, an associate professor of plastic surgery at Stony Brook School of Medicine, researched case studies of babies with craniosynostosis and found no instances of triplets with the condition.

The doctors calculated the chance to be 1 in 160 trillion for the Howard boys being born with it.

Although triplets, two of the boys — Hunter and Jackson — are identical twins. They had a form of craniosynostosis known as sagittal synostosis, which can cause the head to grow long and narrow, if uncorrected. Saggital synostosis is considered the most common form of craniosynostosis, occurring in one of every 2,000 births.

Fraternal triplet Kaden was diagnosed with a more unusual form of the condition, called metopic synostosis, which affects one in every 10,000 births. The metopic suture is the joint that runs from a baby’s “soft spot” at the top of the head down the forehead to the top of the nose. Closing too soon results in a skull that has a triangular, pointed appearance.

Chesler and genomic researchers at Yale University are researching the boys’ case with a focus on its rarity and the gene — or genes — that likely contributed.

While most instances of the condition are considered sporadic, which means there are no medical explanations why they occurred, genetic factors play a role for a some, Chesler said.

“I will be following them for the next four to five years,” Chesler said. “They are doing awesome. You can barely tell they had surgery when you look at them now. I am ecstatic that they are doing so well.”

To correct the condition, Chesler, who has been at Stony Brook since 2014, used an endoscopic technique that he introduced at the hospital, which he said took less time to perform and was far less invasive than an older procedure.

The endoscope, a tube with a camera attachment, was guided through an incision only about an inch wide in each baby’s scalp. This allowed Chesler to open the affected suture so the baby’s head could grow normally.

Amy Howard is thrilled her sons are so rambunctious in light of the difficulties facing them at birth.

“So far they are hitting all their milestones,” she said. “The whole experience from finding out there would be three babies to the surgery, the helmets, to having toddlers. It has been a whirlwind.”