Finding the calm in the storm
When Leah and Jason Burke became first time parents to Ryan they were thrilled. They were not immediately concerned that he was born with a misshapen head – a common occurrence that usually corrects itself. Ryan was a healthy baby in all other aspects. But when the lopsidedness seemed to get more noticeable his parents got worried.
“His pediatrician recommended we see a neurosurgeon,” said Ryan’s mom, Leah Burke, recalling the “terrifying” moment she heard her baby needed to see a neurosurgeon.
Ryan was diagnosed with craniosynostosis, a premature fusing of bones that usually remain open during the early months of growth to allow the brain to grow. When one or more of the sutures closes prematurely, the brain will continue to grow but the head shape will be distorted. The diagnosis was confirmed by a CT Scan of the head.
Ryan had a fused lambdoid suture – the joint that spans the back of the skull. As his brain grew, his ears became lopsided and his forehead pushed forward on one side.
The Burkes live in Oklahoma City but decided to return to Leah’s hometown of Houston for the surgery, where they could be surrounded by family and friends and have access to world class medical care.
“It’s very, very scary to think about your little boy having to go through something so traumatic,” she said, recalling through tears the moment the anesthesiologist sedated her baby boy. “But at the same time, we would do whatever we had to do to make sure he had a normal life.”
“We were so fortunate to find Dr. Teichgraeber and Dr. Sandberg” at the UTHealth Craniofacial Team associated with Children’s Memorial Hermann Hospital.
During the four-hour surgery, Dr. Sandberg removed pieces of Ryan’s skull and Dr. Teichgraeber the plastic surgeon reshaped the head leaving space for his brain to grow. After surgery Ryan was fitted for a helmet that he will wear for about 3 months to help guide the growth of his skull and maintain a more normal shape.
We expect that the only evidence of this early surgery will be the scar that will be hidden by his hair.
Ryan is back home in Oklahoma City recovering from the surgery, which took place June 5. He will continue to be followed by the team in Houston but the parents are already moving on as he makes all the usual milestones like cutting his first tooth.