In 2014, Megan Boler noticed that her newborn son’s head was a little unusually shaped. According to ABC News, initially she thought that her child had just followed her family’s tradition of having round and large heads. Megan explained, “We definitely thought it looked a little unusual. We thought maybe he has an unusual-shaped head. We didn’t think about any of the ramifications.”
However, at her son’s two-month checkup, doctors warned her that Matthew was born with a soft spot on his head and could have a condition called craniosynostosis. The Mayo Clinic defines the condition as a birth defect that causes the joints between the bones of a baby’s skull to close prematurely, before the baby’s brain is completely formed. This can result in the child’s brain to grow improperly and for its head to be misshaped.
Megan explained how she felt after receiving Matthew’s diagnosis. She said,
“I was in shock. I felt overwhelmed and scared about the well being of our little boy. The name alone, craniosynostosis, is a mouthful and scary sounding.”
Her baby’s doctor told her, “Don’t take this lightly, I want to refer you to the neurosurgeons at Texas Children’s Hospital.”
At Texas Children’s Hospital (TCH), neurosurgeons confirmed her doctor’s suspicion that Matthew had sagittal synostosis and Megan was informed that her baby had to have surgery. The Director of the Craniofacial Surgery Program at TCH, Dr. Sandi Lam explained, “His brain was growing underneath but the skull doesn’t allow for it because of the way it’s fused. There’s no medicine that will unfuse the bone, the treatment is surgery and basically we have to cut out the bad bone.”
Additionally, Dr. Lam said that Matthew’s young age actually benefited him because surgeons were able to make smaller incisions, which would help him recover quickly and make reformation easier after surgery.
The procedure, performed on October 23, 2014, proved to be a success, with Matthew able to get back to his regular self just 72 hours later.
Doctors originally estimated that Matthew would have to wear a special helmet to help his skull form properly for up to a year. Luckily, Matthew only had to wear the helmet for four months.
“The months of helmet therapy were hard on me but he took it all in stride,” Boler told ABC. “He has low-muscle tone in his torso, which I have found is not unusual for kids with craniosynostosis. He is currently doing physical therapy and is making great progress.”
Boler said that she has learned a lot from the experience and that it has strengthened them as a family.
“I learned a lot about trusting others to take care of my child,” Boler said. “I also learned to take Matthew’s lead. When ever I began to feel overwhelmed or scared and I just looked at his smiling face and knew it was going to be ok. He met each obstacle with a smile.”
Boler’s mom hopes that Matthew’s story will raise awareness about craniosynotosis and may lead to more early diagnosis. Lam and his team at Texas Children’s Hospital say they are proud of the medical help they’ve been able to provide Matthew and other children with his condition.
“Most babies undergoing endoscopic surgeries go home the day after surgery. It’s great to see how wonderfully these patients do after their procedure,” Lam said in a statement.