Stories about: craniosynostosis

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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Families with Apert syndrome find similarities, not differences

Apert syndrome
Madilynn and her father Rocky

For some families in the waiting room on the day of the Apert syndrome clinic, it’s a reunion. For others, it’s a revelation. Coming to Boston Children’s Hospital from as far away as China, some have never met another child with Apert syndrome. Before long, parents and kids of all ages and ethnicities are taking group selfies as the younger children run around and play.

“These kids have the brightest smiles, they’re very resilient,” says Tambra Milot, mother of 3-year-old Madilynn.

Each year, the clinic sees about 50 children with Apert syndrome, a rare genetic disorder in which the skull, face, hands and feet develop abnormally. The clinic is held at least twice a month, bringing together the specialists each child needs to see. Today, families are also here for the weekend, to exchange information and learn about the latest research at Boston Children’s 2016 Apert Family Symposium.

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Craniosynostosis: Heading in the right direction

craniosynostosis endoscopic
Credit: Rachel Larson Photography

When Ella Dorsey was born, her father Paul noticed something different about the shape of her skull. Her mother Cynthia, tired after the birth, assumed Ella’s head had gotten a little misshapen going through the birth canal, not an unusual thing to happen. But just before they were discharged, Cynthia noticed that a pediatrician she hadn’t yet met was paying particular attention to Ella’s head.

“She was holding the baby, touching her head, constantly going over the baby’s skull,” she remembers. “I finally said to her, ‘Is the baby OK?’”

That’s when Cynthia first heard the term craniosynostosis. She felt the bony ridge at the top of Ella’s head where the plates of her skull had fused together too early. Normally, these plates stay open into puberty to allow the brain room to grow, but in 1 of about 2,500 babies, the plates fuse together too early.

“I’m hysterically crying, shocked, still not knowing what this condition is,” Cynthia recounts. “As a parent, I’m thinking, ‘She’s going to have issues that will last a lifetime.’ I probably cried more than I cried in my entire life.”

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How craniosynostosis turned a Costa Rican family into New England Patriots fans

Marcel and MomLike many new mothers, Lyana Guzman Gutierrez was exhausted but overjoyed after giving birth to a healthy and beautiful baby boy. But within two weeks, Lyana, who lived near San Jose, Costa Rica, noticed that Marcel’s eyes and other facial features were not aligned.

Lyana’s mother urged her to bring Marcel to the pediatrician, who referred her to a local radiologist. The specialist diagnosed Marcel with craniosynostosis, a condition in which the fibrous joints or sutures between the plates of the skull fuse too early during a child’s development. This resulted in asymmetry of Marcel’s head which, if left untreated, could lead to further disfiguration, brain and skull growth issues and possible neurological complications.

Through her research, Lyana had already suspected Marcel had craniosynostosis and started exploring her options. Though the neurosurgeon in Costa Rica was willing to treat Marcel, Lyana explains, “My husband and I were looking for the best doctors and the best place in the world to treat Marcel, and we were going to do whatever it took.”

Lyana’s research led her to Boston Children’s Hospital’s website and a video of Mark Proctor, MD, vice chair of neurosurgery. “Something was telling me, you can trust this guy. He’s the one. It was a mother’s instinct.”

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