When their baby was born with an unusually long head, Megan and Michael Boler didn’t think much of it. Their first child had a large head at birth too, and she’d been perfectly healthy. However, when their son was two months old, doctors gave his family a worrying diagnosis.
In 2014 Megan and Michael were already the proud parents of one little girl. Furthermore, they had another baby on the way. And this time they were presumably excited to be expecting their first boy.
The couple welcomed their son on July 16, 2014. They called him Matthew, and noted his bubbly personality. They drank in his features and were delighted to note that he shared a likeness with his big sister. Except there was one obvious difference.
While Matthew’s sibling’s head had been large and round at birth, his was long and narrow. Furthermore, he sported a distinctive furrow in his brow. His parents couldn’t help note the unusual shape of their son’s cranium.
When a baby is born, they have soft spots at the top of their head known as fontanels. These allow the malleable skull to move during labor, enabling it to fit through the birth canal. As a result, newborns’ head shapes can sometimes look a little strange.
With this in mind, Megan and Michael didn’t think Michael’s head shape was anything to worry about. “We definitely thought it looked a little unusual. We thought maybe he has an unusual-shaped head,” Megan told ABC News in 2015. She continued, “We didn’t think about any of the ramifications.”
By the time Matthew was two months old, he was a healthy and happy little boy. At a routine check-up, his parents were presumably delighted to hear their little boy was thriving. However, when the doctor began to examine the infant’s head, they received some worrying news.
Their physician, Dr. Kristin Koush, revealed that she couldn’t find the soft spot at the top of Matthew’s head. Furthermore, she said the shape of the baby’s head was concerning. As a result, she referred him to Texas Children’s Hospital.
It was Koush’s belief that Matthew had craniosynostosis and would need to undergo surgery. The condition affects a baby’s skull, causing it to fuse together before the brain has fully formed. According to the National Center for Biotechnology Information, craniosynostosis affects one in every 2,000 to 2,500 live births every year. If undetected, children with the condition may go on to experience headaches, delayed development, eye problems and pressure on the brain.
Understandably, Matthew’s diagnosis was a worrying one for his parents. “It seemed like time slowed down and I could feel my heart beating in my throat,” Megan explained in a 2015 blog post on the Texas Children’s Hospital website.
The concerned mom added, “What had been an ordinary check-up had just turned very serious. Dr. Koush was very calm and explained to me that this was serious but not life threatening and that he needed to get in to see them as soon as possible.”
So before Megan and Michael knew it, they were sat in front of Dr. Sandi Lam at Texas Children’s in Houston. It was then that the pediatric neurosurgeon broke some serious news to Michael’s parents. “She told us that his sagittal suture had fused (this is the suture that runs across the top of the head) and that it would require surgery to correct,” Megan revealed.
Consequently, a medical team scheduled Matthew’s procedure for just ten days later. Because of the baby’s age, surgeons could use a less invasive endoscopic method. This way, all they had to do was make two small incisions. Then they could remove some bone and create Matthew’s missing soft spot.
Recalling the day of Matthew’s surgery in October 2014, in 2015 Megan told People, “It was one of the hardest things we’ve ever done. That feeling of handing your little baby over to an anesthetist was scary. We handed him over, said a prayer and went to the waiting room.”
Five long hours later, medical staff told Megan and Michael that they could finally see their son. However, nothing could have prepared them for Matthew’s condition post-surgery. “He was totally unrecognizable,” Megan revealed. “He was so swollen.”
The next 72 hours of Matthew’s recovery were difficult, not least for his parents. “He was inconsolable for a brief period,” Megan revealed. “That was so hard. No parent can prepare for how that feels.”
However, before long Matthew was back to his happy, smiling self. After the procedure, the infant spent four months wearing a corrective helmet. And while this period was difficult for his parents, it didn’t seem to faze Matthew at all.
Speaking to ABC News, Megan explained, “The months of helmet therapy were hard on me but he took it all in stride. 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.”
As Matthew prepared to celebrate his first birthday, he was fighting fit. He no longer needed his helmet and was much like any other child his age. “He loves people and loves to laugh and to talk. Most people when they meet him have no idea what he’s been through,” Megan told ABC News.
However, Matthew’s parents were eager to highlight that things could have been different if doctors hadn’t caught his condition early. “If there’s a family out there who’s looking at their baby and is concerned about the shape of his head, we want them to know that they should ask their doctor to get their child evaluated,” Megan said.