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How craniosynostosis turned a Costa Rican family into New England Patriots fans
The biggest problems most doctors in summer camp deal with are sunburns, bug bites and minor scrapes. Fortunately for Gabe and Erin Chernov, who own the Birch Trail summer camp for girls in northern Wisconsin, their camp doctor is a practicing neurosurgeon, a doctor who helped them realize that their son Miles was born with a rare disease called craniosynostosis.
Miles Chernov (r) traveled to Boston Children's Hospital with his father Gabe (l) to undergo minimally invasive surgery for craniosynostosis.
Affecting about one in 2,500 children, craniosynostosis is a disease in which the bone plates in a baby’s head fuse too early. Untreated, this can lead to excess pressure in the skull and learning disabilities, in addition to cosmetic deformity. But treatment usually involves open surgery.
“It scared the heck out of us…they open the whole head, a huge scar from ear to ear,” Gabe said after hearing the open surgery details.
After considering who they could talk to about this, they turned to the neurosurgeon in their camp, who recommended another neurosurgeon in Milwaukee and a neurosurgeon at Boston Children’s Hospital. The neurosurgeon in Milwaukee recommended open surgery where the problem suture is removed. Open surgery is the usual treatment for this condition, but it’s an invasive four-to-six-hour operation and three to four days in intensive care. This procedure would include a long recovery time with a guaranteed blood transfusion. The Chernovs would also have to wait until Miles was 8 months old.
They then met with Boston Children’s neurosurgeon Mark Proctor, MD, who is an expert in the condition. Proctor has a great deal of experience with minimally invasive endoscopic techniques for this condition, which he has been doing since 2004 at Boston Children’s. He is now one of only a few surgeons in the country who is experienced with the procedure. In fact, Proctor has authored several key papers about minimally invasive approaches to the treatment of craniosynostosis. In one of these papers, he was the lead neurosurgeon involved in developing formal parameters of care for the condition.
The minimally invasive craniectomy that Proctor proposed for Miles Chernov is designed to allow for normal brain growth and development and correct deformities in the facial and skull bones. It works best in children who are less than 3-4 months old, since the bones are still soft and pliable. It’s usually an hour long procedure with no need for a blood transfusion, and only one night in the hospital. Fortunately for 3-month-old Miles, he was a good candidate and he had the minimally invasive procedure in July, 2012.
As Miles continues to grow, he wears a helmet, and he visits Proctor for a follow-up exam every two months for a year. His last visit was such a success, he may even be able to stop wearing the helmet after just three months. It’s also likely that Miles won’t have any long–term problems because of the craniosynostosis.
A journey that started in a northern Wisconsin summer camp, ended a few weeks later in a Boston Children’s operating room. Talking of their experience at Boston Children’s Gabe said, “In a heartbeat we would recommend this to other families.” Gabe was pleased to report that Miles will now be “a healthy kid for the rest of his life.”
We are grateful to have been ranked #1 on U.S. News & World Report's list of the best children's hospitals in the nation for the third year in a row, an honor we could not have achieved without the patients and families who inspire us to do our very best for them. Thanks to you, Boston Children's is a place where we can write the greatest children's stories ever told.”