Monroe Carell Jr. Children's Hospital at Vanderbilt
Monroe Carell Jr. Children's Hospital at Vanderbilt
Monroe Carell Jr. Children's Hospital at Vanderbilt
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Home / A–Z Services / Cleft and Craniofacial Center / Craniofacial Conditions / Family Finds a Double Dose of Healing for Craniosynostosis
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Family Finds a Double Dose of Healing for Craniosynostosis

 

Sara and Ramin Hanai noticed the odd ridge forming on the forehead of their six-month-old son. They were not overly concerned because Shmuli was hitting all his milestones and growing into a happy and healthy baby. During a well-child exam, the family pediatrician explained to Sara that the small ridge could signal a serious problem called craniosynostosis.

“I was overwhelmed with emotions and questions,” said Sara. Craniosynostosis and trigonocephaly were certainly not words in our everyday vocabulary. I hardly heard what came out of the doctor’s mouth, but I will never forget his instructions to go to Children’s Hospital for cranial X-rays.”

Hanai family at Children's Hospital

Craniosynostosis is when one or more of the soft growth joints in a baby's skull, called sutures, turn to hard bone too early. If the joints grow together too soon, a baby's skull cannot properly expand to hold the growing brain. Left untreated, the condition can damage the brain. If the soft joint at the front of the head (metopic suture) fuses too soon, children such as Shmuli, develop a triangular-shaped forehead called trigonocephaly.

Shmuli’s X-rays seemed to show that all looked fine, but Sara could not shake the fact that the two dimensional images were not showing what she and Ramin were seeing on their son’s head. A friend put them in touch with a pediatric plastic surgeon at Monroe Carell Jr. Children’s Hospital at Vanderbilt. After a CT scan and examination, the surgeon confirmed craniosynostosis and recommended surgery to reshape Shmuli’s skull.

“The surgeon was fabulous about answering all our questions,” said Sara. “We sought a second opinion from a pediatric craniofacial surgeon near my childhood home and after a brief visit, we headed back to Nashville confident that we had the best care just minutes from our home.”

The craniofacial team at Children’s Hospital worked with the Hanai family to schedule the complex surgery that would open the growth plates in Shmuli’s skull. “When that day arrived, we trusted the surgeons with our most precious possession and we sat for eight hours wondering if we had made the right decision.”

Because of Shmuli’s age and his condition, the craniofacial surgery team used an open surgery technique to cut his skull bones and successfully reshape his head. Surgeons at Children’s Hospital can sometimes use a less invasive surgery called endoscopic craniosynostosis repair. The endoscopic procedure typically requires only two small cuts through the skin at the top of the scalp.

The complex surgery went smoothly and was followed by a nine-day recovery at Children’s Hospital. “Our stay at the hospital was marked by wonderful nurses, volunteers, and Child-life specialists,” said Sara. “Follow up visits with the craniofacial team showed that Shmuli was growing into a healthy and active boy.”

Shmuli was thriving and life for the Hanai family was moving forward, including the birth of their fourth child; a girl named Ilana. Just two years after their son’s surgery, Sara and Ramin began to see a familiar appearance with their new baby girl.

“We had no family history of craniosynostosis prior to Shmuli,” said Sara. “It never crossed our minds that two years after Shmuli’s surgery, we would find ourselves back in at Children's Hospital, this time having our beautiful daughter, Ilana, evaluated for the same condition.”

craniosynostosis helmet molding therapyDoctors first prescribed helmet-molding therapy. Ilana wore a custom-made pink helmet 23 hours a day. The cranial remolding helmet applied gentle and steady pressure to reshape Ilana’s skull. After six months of helmet therapy, the  craniofacial team determined that surgery would still be needed to correct Ilana’s condition.

“We had a much lower stress level this time around, explained Sara. “We knew what to expect and had complete confidence that the doctors and staff at Children's Hospital would take care of Ilana as though she were their own.”

Ilana had a longer recovery than Shmuli because she was about eight months older for her surgery, but both children recovered well and got back to being playful kids.

Follow up visits included participation in a study conducted by geneticists who are investigating possible genetic causes for the condition. Craniosynostosis affects about 1 in 2000 children. The Hanai children are particularly helpful to researchers because only a small portion of siblings have the condition.

“The kids are just about all healed up,” said Sara. “We jokingly ask the surgeon what he did to our children when he was poking around their heads because they are so active, fearless, and funny."


Last Edited: August 14, 2013
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