COLUMBIA — When Cindy Wininger’s grandson was born, she noticed something unusual about the infant — something she hadn’t seen in more than 20 years, when her own daughter was born.
In 1980, when Wininger gave birth to her daughter Tiffany, she noticed that the baby had an abnormally shaped head. It turned out that Tiffany had a condition called craniosynostosis, a premature fusion of the skull plates.
Back then, the only way to fix this abnormality was through a long and intensive surgery. At just 8 weeks old, Tiffany’s skull was cut open from ear to ear and divided into segments in order to reshape the head. The surgery took hours, there was a lot of blood loss, and her recovery was long and painful.
The procedure was risky, but at the time, it was the only option.
So when doctors confirmed that Tiffany’s child, Hayden, also was born with craniosynostosis, Wininger and Tiffany Lackman began to prepare themselves for Hayden’s surgery.
However, Lackman’s family physician recommended another option for baby Hayden: a less invasive endoscopic strip craniectomy researched and performed by Usiakimi Igbaseimokumo, assistant professor of neurosurgery at MU.
Developed in 1996 at University Hospital by David Jimenez and Constance Barone, an endoscopic strip craniectomy requires a small incision on a child’s skull to remove a strip of bone, creating room for the brain to grow and eliminating the buildup of pressure.
Igbaseimokumo started performing this technique in May 2007 and has taken over the research looking at the long-term effects on children treated by this method.
Last month, his research was presented at the American Association of Neurological Surgeons in Chicago. He also was able to present his findings in September, at the most recent International Society of Pediatric Neurosurgery meeting, stating that the preliminary research on the technique shows it is just as effective as its more invasive alternative.
After undergoing the endoscopic strip craniectomy in August, Hayden is in the recovery stages and is doing well. He is one of 78 children involved in Igbaseimokumo’s study.
The Lackman family travels about 50 miles from St. Thomas every six to eight weeks to check on Hayden’s progress. During his recent checkup in April, Igbaseimokumo held 9-month-old Hayden in his arms as he examined his head.
“Nice and smooth, no bumps,” Igbaseimokumo said as he gently felt the child’s head with his fingers.
“You look fabulous,” he added, looking at Hayden.
Lackman said that she feels fortunate that her son didn’t have to go through the same procedure that she had to undergo. Craniosynostosis affects one out of 2,100 babies each year,
Often confused with skull deformation due to birth, craniosynostosis is a permanent cranial deformation, and the only way to fix it is through surgery.
When a baby is born, the skull is divided up into different segments, and each segment contains sutures that will ultimately fuse together as a child gets older.
But when a baby is born with craniosynostosis, one or multiple sutures fuse together too early, leaving the brain little or no room to grow. The brain must push its way in a different direction, which most often causes cranial distortion and pain.
If a child waits too long or never receives treatment, the child can be susceptible to physical and developmental problems, said Cathy Cartwright, a pediatric nurse speciality in neurosurgery at University Hospital.
“If the surgery is not performed, the baby may go through some pain and may have a misshappen head as they get older,” she said.
Although there are several theories about the cause of this condition, research has shown that the deformation is sporadic.
When Tammy Davidson of Mokane was still in the hospital after giving birth to her son Drake, she learned he had craniosynostosis, and she wanted him treated immediately. Davidson said the condition caused her son discomfort.
“I would do my best to comfort him when he cried,” she said. “I would rub his head and try to comfort him, but with each day it was getting worse.”
She took Drake, now 6 years old, to University Hospital for the less invasive craniectomy when he was 6 weeks old.
Besides being easier on the child, the endoscopic procedure is also less expensive than the more invasive procedure, according to Cartwright. The estimated cost of the procedure in Texas — which includes treatment and follow-up care — is between $12,000 and $20,000, according to Lisa Beebe, department administrator at University of Texas Health Science Center in San Antonio. Most insurers cover the treatment.
But some families have to take the more invasive route. If a child’s condition is not caught within the first few months, when their head is still soft, the less invasive surgery is no longer an option.
Babies that have the minimally invasive surgery wear a molding helmet for a year after the procedure.
The helmet, made of plastic, is unobtrusive and slowly molds the head into a round shape.
“Most people are always saying how you need to watch your kid and make sure that he doesn’t fall over and bump his head, but for me that wasn’t really a problem,” Davidson said of Drake.
Since their last appointment in April, Hayden no longer has to wear his helmet. At this point, he will have annual checkups in which his head will be measured to gauge growth and make sure he is progressing normally.
“It’s very exciting to be able to look at my son as a whole,” Lackman said. “Being able to hold my son and kiss his forehead is very exciting.”
Although developed at University Hospital, the procedure is catching on. Like Igbaseimokumo, 20 doctors from the U.S. and elsewhere have learned this procedure from Jimenez and Barone.
Lisa Beebe, department administrator at University of Texas Health Science Center in San Antonio, said she’s seen the benefits of the procedure for herself. Beebe works with Jimenez and Barone, who have since moved to the San Antonio center.
“I have seen first-hand what this means to families who opt for the less invasive surgery,” Beebe said. “Families are able to see their baby go home after one night and are so grateful.”