"Any mom who hears the word 'neurosurgeon' for a child gets worried," Megan Boler tells PEOPLE

By Susan Keating
June 29, 2015 11:55 AM
Courtesy Boler Family

Matthew Boler’s parents always thought their infant’s head had an odd shape – but never thought much about it until a routine checkup when he was 2 months old.

To their horror, Megan and Michael Boler learned that the shape of their son’s head was not just a cosmetic issue – it was a potentially life-threatening birth defect that could stunt the growth of his brain.

“I thought, ‘Oh, gosh, we’d been talking about this since he was born, that his head was long,’ ” Matthew’s mother, Megan Boler, tells PEOPLE.

The pediatrician suspected that Matthew’s lack of a soft spot and the long shape of his skull meant that he had a condition known as craniosynostosis, in which a baby’s skull fuses prematurely.

Matthew Boler as a newborn
Courtesy Boler Family

An infant skull needs to be open at certain junctures in order to allow the baby’s brain to grow. When the sutures grow together too soon, the brain still expands with age, but causes the skull to grow in unusual shapes. If left untreated, the condition can cause neurological problems or, in extreme cases, death.

“The pediatrician told me she wanted us to see a neurosurgeon right away,” Megan says.

It was a sobering recommendation.

“Any mom who hears the word ‘neurosurgeon’ for a child gets worried,” Megan says. “I started to get very nervous.”

Megan went to the parking lot and called her husband Michael, a classics professor.

Within a week, Matthew’s diagnosis was confirmed by Dr. Sandi Lam, director of craniofacial surgery at Texas Children’s Hospital.

Ten days later, Matthew underwent endoscopic surgery to open his skull along the sagittal suture and remove bits of overgrowth.

“It was one of the hardest things we’ve ever done,” Megan says. “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.”

For five hours, the worried parents watched updates on a computer monitor and talked to a nurse who periodically came out to give progress reports. Finally, Matthew went into the recovery room.

“He was totally unrecognizable,” Megan says. “He was so swollen.”

Matthew Boler
Courtesy Boler Family

“He was inconsolable for a brief period,” she adds. “That was so hard. No parent can prepare for how that feels.”

Encouraged by nurses, Megan picked up Matthew and cuddled him. Both parents sang to their baby – a Latin hymn, “Regina Caeli” – and he eventually calmed down.

The next day, Matthew went home.

“He continued to swell, which is normal,” Megan says. “On the third day, he perked up, looked at his big sister and smiled.”

Matthew spent four months in a corrective helmet, and now – eight months following surgery – he s a normal, healthy child, getting ready to celebrate his first birthday.

Matthew Boler post-surgery
Courtesy Boler Family

But if his condition hadn t been discovered as soon as it was, his recovery might not have been so smooth.

“Early diagnosis is important,” Dr. Lam tells PEOPLE. “If you catch it early, it gives the baby a wider variety of treatment options.” After three months of age, she says, “you will need a bigger surgery.”

Although craniosynostosis isn’t often discussed, it is surprisingly common. Dr. Lan says it occurs in about one in 2,000 live births.

Matthew Boler after surgery (left) and during recovery (right)
Courtesy Boler Family

The Bolers hope that by telling their story, they will encourage other families to pay close attention to their infants’ development.

“The miracle is, Matthew’s pediatrician caught it as early as she did. He has had no long-lasting effects,” says Dr. Lan, adding that the vast majority of infants who undergo the procedure go on to live normal, productive lives.

“When they grow up, you might not even be able to know they had surgery when you look at them,” Dr. Lan says.

For Matthew’s family, they’re just grateful their baby’s diagnosis and treatment came as soon as it did.

“We haven’t looked back,” Megan says.

Megan Boler with son Matthew and daughter Madeleine, 5
Courtesy Boler Family
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