“She was perfect,” said Cheryl. “A sweet little girl. Flawless in my eyes.”
When Alice was born in January she was flawless from the outside. But the Reads would soon learn their new baby wasn’t flawless on the inside. In fact, within a few weeks, Cheryl said she began to notice something was wrong with her newborn.
“Probably about a month in, I started noticing her forehead looked a little different,” Cheryl said.
Initially she thought it was from the birthing process and convinced herself not to worry, but she would soon learn the heartbreaking truth.
“At her four month check-up, her doctor brought it to my attention,” Cheryl said.
Alice’s pediatrician noticed one of her eyes was droopy and her forehead was not symmetrical. A few weeks later, the neurosurgeon gave them a live-changing diagnosis.
“She had left coronal craniosynostosis,” Cheryl said. “The left side of her forehead and skull were held back and her right side was growing outward.”
The openings in a baby’s skull that allow the brain to grow had closed too soon. As her brain grew, Alice’s skull began protruding which would eventually disfigure her tiny features and possibly lead to developmental problems.
“We were completely shocked by it,” Cheryl said.
That shock was followed by panic.
Though she was just four months old, local doctors considered Alice too old for the less invasive treatment. They said she would need major reconstructive surgery.
“I was terrified, “said Cheryl. “I was a mess. I got mad. How can I not have this smaller surgery? I missed it by a month. There has to be someone who can still do it.”
Cheryl spent hours on the internet searching for a doctor who would do the smaller surgery.
She even started a blog about Alice’s journey. “I was determined to find a doctor and I didn’t care where I had to go,“ Cheryl said.
She wouldn’t have to go far.
Doctors in Texas and Boston offered to perform the surgery, but then the Reads’ insurance company approved a doctor much closer in Washington D.C.
He performed Alice’s surgery July 12, 2013.
“He opened up a strip of bone from here all the way down to her ear which opened the skull back up how it’s supposed to be,” said Cheryl.
She says the surgery was a success.
Alice, now eight months old, must wear a little helmet for the next year and a half to shape her head. And there’s a good chance she won’t have to undergo any additional surgeries.
Her birth defect is rare, about one in 2000 births.
Pediatrician Sean McKenna, says 99% of the children he sees are fine, but diagnosing the one percent that have something wrong is critical.
“The clock is always running in pediatrics,” said McKenna.
Dr. McKenna says certain genetic disorders like Alice’s must be diagnosed early to prevent long term damage or to avoid major surgery. That’s why doctor visits are so frequent in the first year of life. He says they’re looking for congenital and genetic disorders
Pediatricians now screen for disorders such as autism between 12 and 18 months.
And since you are your child’s advocate, McKenna says if you feel something is wrong, speak up.
“What I tell parents is to trust your instincts,” he said.
Read says she wishes she had listened to her gut, and taken action sooner. But says she’s glad her pediatrician caught Alice’s problem in time.
“No matter how crazy you sound or how paranoid you sound, you need to bring it up,” says Cheryl.
The Read’s will travel to D.C. next week for Alice’s next checkup to make sure her head is growing properly.
Cheryl says it’s not over for them yet. There’s still a possibility Alice may need another surgery, but she hopes she won’t. Cheryl and her husband Jason want to help other families who have children born with craniosynostosis.
Click on this link to read Cheryl’s blog http://coronalcraniosynostosis.blogspot.com/ .