Craniosynostosis (Costa Rica)
Like 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, Neurosurgeon-in-chief. “Something was telling me, you can trust this guy. He’s the one. It was a mother’s instinct.”
All signs lead to Boston
Lyana had very fond memories of studying English in Boston and felt the city must be calling her back. She contacted Boston Children’s International Center and began to rush Marcel’s x-rays and files from Costa Rica to Boston. After reviewing Marcel’s case, Proctor let Lyana know that her son was an ideal candidate for minimally invasive endoscopic surgery, which works best in children who are 3 months old or younger, when the bones are still soft and pliable. The surgery would involve making small incisions in Marcel’s head, and inserting a special camera and tools to remove the fused sutures. Once the sutures were removed, Marcel’s skull would grow normally.
With passports and visas in hand, Lyana and her husband packed up Marcel and their young daughter and boarded a plane for Boston, together with Lyana’s parents. Boston Children’s International Center helped the family settle at The Inn at Longwood Medical just around the corner from the hospital for the duration of their one-month stay in Boston. Lyana remembers, “From the first time we walked into the hospital, everybody was super nice to us, not just the doctors but everyone from the cafeteria staff, the front desk, the nurses, the social workers…they are just amazing people. Everything is anticipated. It’s a perfect system.”
Four days after landing, Proctor operated on Marcel. Baby Marcel got right to breastfeeding immediately after the 30-minute procedure, a sign for Lyana that her son was okay. Because the surgery was minimally invasive and only required a 1-inch incision in his head, Marcel was released from the hospital the day after surgery and was able to recover at the hotel with his family.
Handsome in a helmet
Before flying home, Marcel was fitted with a helmet to protect his head and make sure it kept its shape as it grew. He returned to Boston Children’s several times over the course of the next year for helmet adjustments.
Orthotist Chelsey Anderson worked with Lyana to map out a follow-up plan for helmet adjustments that was convenient for the family. Mother and son would make the daylong trip on Thursday, have checkups on Friday and Saturday and fly back on Sunday, so Lyana could be back at work as a food engineer on Monday. Lyana admits, “The travel was very difficult, but it can be done.” It helped that the family that received Lyana as an English student kindly opened their doors to her again during follow-up visits.
When Marcel graduated to a larger helmet, Lyana—now a big New England Patriots fan—made sure it had a Pats logo on it. She laughs, “Marcel looked way more handsome than Tom Brady. On Marcel’s first birthday, friends and family celebrated with a Patriots-themed party. Football helmets decorated the table alongside Patriots cups, plates and other goodies that Lyana had picked up in Boston. She even made “Marcel’s Team” t-shirts for guests in honor of her son’s journey and the team of physicians, friends, family and co-workers who made it possible.
Not quite two years after his surgery, Marcel is a healthy toddler who rarely stops to rest. He loves to run, climb, jump and ride elevators. Proctor says that Marcel has an “excellent prognosis for a perfectly normal life, with no further need for surgery.” He now needs to return for checkups only once a year until he’s four.
“It’s been quite a journey, but we made it,” says Lyana. “And if I had to do it again, I would do it 1,000 times over the same way.”