Born with Disfigured Skull – Now Fully Mended
It's a rare condition in the medical world – and, fortunately, it's one Cameron Johnson will only remember through his first baby photos. Cameron Johnson was only 1 week old when doctors pinpointed the cause of his malformed skull – a rare condition known as craniosynostosis. But even before then, his parents knew they had cause to worry.
He was born at a local hospital near his parents' hometown of Middletown, Mo. As Amanda Spegal, Cameron's mother, joyfully held her newborn baby boy for the first time, she noticed something odd about the shape of his forehead. But since babies are commonly born with misshaped skulls as a result of the delivery process, Amanda tried to hide her concerns.
After bringing Cameron home from the hospital, Amanda could no longer keep her worries at bay. Instead of Cameron's skull returning to normal, it seemed to protrude even more. After an emergency consultation with Cameron's pediatrician, she learned the likely cause – a rare form of craniosynostosis known as metopic synostosis.
The condition causes two of the skull's growth plates to fuse together too soon, and as a result, the rapidly developing brain forces the head into an unnatural shape.
Now that they knew the cause, it was time to find treatment.
Getting the Best Care
After gathering all the knowledge she could about the condition and available treatment options, Amanda was reassured that Children's Mercy Hospitals and Clinics had what her son needed – a cure.
She met with Usiakimi Igbaseimokumo, MD, a Children's Mercy neurosurgeon who specializes in treating Cameron's condition. The initial diagnosis was confirmed, and after weighing treatment options, Amanda decided to have Cameron return in two weeks for a minimally invasive procedure – at which time he would be just 3 weeks old.
"I was really nervous. Here I am holding my baby, and soon I'm going to hand him over for surgery. I was an emotional wreck," Amanda said. "But I was surrounded by amazing people who constantly reassured me. We knew everything would be OK."
Good as New
Cameron's surgery was a success by every measure. And after an overnight stay, they were on their way home, where Cameron continued to recover – and quickly showed signs of improvement.
Cameron adapted to the molding helmet almost instantly. He wore the helmet 23 hours a day for the next 11 months – the standard length of time – to ensure his skull would develop fully and naturally. Then on his 1st birthday, the helmet was removed for good.
"It's fun to see him now and know he looks awesome," Amanda said. "You can't tell there was ever an issue."