Paying it forward: Care for son’s craniosynostosis spurs mom to run marathon

craniosynostosis

Will Flanigan can’t stop giggling. Whether he’s teasing his older sister, Spencer, or charming his way out of trouble with his parents, this toddler “is always cracking himself — and us — up,” says his mother, Caroline. “We call him Will the Thrill.”

On April 17, 2017, Will brought his good humor from his home in Dallas to the Boston Marathon finish line, where he joined his family in cheering on Caroline as she ran. But this wasn’t just any race. Caroline was running with Boston Children’s Hospital’s Miles for Miracles team for a very special reason: Almost exactly a year earlier, Will was a patient at Boston Children’s.

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‘Something was off’

 “Will was about four weeks old when we first noticed something was off,” explains Caroline. The infant’s nose seemed slightly askew, and one eye appeared higher than the other. At first, she and husband Drew dismissed the facial asymmetry as natural. “We didn’t want to be neurotic parents,” she remembers. “We told ourselves that all newborns look funny at first and that he would grow out of it.”

But the concern nagged at them. When they asked Will’s pediatrician about it at his two-month checkup, he agreed that he could see a difference but didn’t want to scare them. When they pushed him, he said he thought the little boy might have craniosynostosis and recommended they see a specialist when they returned from an imminent family vacation to Florida.

Finding help for craniosynostosis

Craniosynostosis occurs when the sutures between the bones of the skull fuse prematurely, affecting the appearance of a child’s head and face. Worse, it can increase the risk of developmental delays and cognitive problems. As they waited for their flight the next day, Caroline and Drew did what most 21st century parents do: They picked up their smartphones and began searching for information online.

“We started looking at medical centers with craniofacial departments,” says Caroline. “Then I realized, ‘I grew up in Massachusetts and I already know that Boston Children’s is good — why not try there first?’” She placed a call to the hospital’s Craniofacial Program, where clinicians requested she send 30 photos of Will’s head from various angles. Then, the family waited.

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A whirlwind of diagnosis and treatment

Within 24 hours, they were in the air again, this time flying from Florida to Boston. Once at the hospital, they met with Dr. Mark Proctor and his colleagues. As he cradled Will’s head in his hands, Dr. Proctor confirmed their fears: Will had craniosynostosis.

Yet what could have been a stressful moment was made easier by the doctor’s confident but mellow approach. “He knew we needed answers and cut right to the chase,” says Caroline. “He said, ‘Yes, he has this. Now let’s make a game plan to treat it.’”

That game plan included minimally invasive endoscopic surgery to release the fused sutures. Unlike a more complex surgery called a cranial vault remodel, this technique doesn’t immediately fix facial asymmetry and requires the child to wear a helmet while the skull heals itself. However, it’s less likely to require follow-up procedures and offers a speedier recovery. Will underwent endoscopic surgery just eight days later.

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Giving back

After a successful procedure, Will returned home to Texas, where he wore a helmet for six months. Today, he’s a happy, active little boy who loves jumping on his toddler trampoline. Although he has no memory of the surgery, Caroline and Drew have kept his old helmet and plan on telling him about it when he’s older. “You would never know this had happened to him,” says Caroline. “But it’s a part of his life.”

As a way to honor Will’s care team, Caroline raised more than $12,000 to compete in this year’s Boston Marathon on the Boston Children’s team. “Our experience at Boston Children’s was so humbling. It was heart-wrenching to watch Will be wheeled into surgery,” she says. “But as worried as we were about our own son, we knew there were families dealing with challenges we couldn’t imagine. We wanted to give back.”

Learn more about the Craniofacial Program at Boston Children’s Hospital.