Liam’s Story

Liam was born with 16p11.2 deletion syndrome and lots of resulting complications. When his family brought him to Nationwide Children’s Hospital in Columbus from their home in West Portsmouth for a surgery, his mom, Edna, noticed that the shape of his head didn’t seem normal.  She asked Liam’s pediatrician about it at his next appointment and they were referred back to Nationwide Children’s Hospital. The diagnosis? Metopic Craniosyntosis, a condition that occurs when the “sutures” (the seams where bone plates join) in the skull fuse before birth instead of gradually over years and through when all head growth is complete.

“I did a ton of research on it,” says Edna. “I immediately got into a support group and posted a picture of his head, asking ‘Did any of your babies look like this? We’re going to Nationwide Children’s.’ I got so much support and in fact someone commented, ‘My baby had the same thing and now I work there.’ She was so helpful in telling me about options and giving me the run-down of how the process works, mom to mom.”

During what can be a terrifying event for an infant’s family, Liam’s mom was able to keep her stress level under control. “We felt that the doctors were so forthcoming and thorough in answering all of our questions. They kept us updated regularly during surgery and were great at texting us at specific stages.”

Liam came through just fine! His mom says that his head surgeries was the scariest out of all 11 of his surgeries but it was also the one from which he most quickly recovered. “It’s very stressful to think that your baby is going to have his head shaved and his skull cut open—and it is so scary—but it heals so fast.”

Today, 18-month-old Liam is thriving. His mom says he’s the happiest baby she’s ever seen. He loves cars and tractors and anything else that rolls. He sings all of the time and says lots of words for such a little boy. Most of all, Edna says, “He’s simply a blessing.”

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  • Name: Liam C.Liam C
  • Condition(s): Cancer, Craniosynostosis
  • Age at Treatment: 2 months
  • Age Today: 07/01/20182 Years

Liam was born with 16p11.2 deletion syndrome and lots of resulting complications. When his family brought him to Nationwide Children’s Hospital in Columbus from their home in West Portsmouth for a surgery, his mom, Edna, noticed that the shape of his head didn’t seem normal.  She asked Liam’s pediatrician about it at his next appointment and they were referred back to Nationwide Children’s Hospital. The diagnosis? Metopic Craniosyntosis, a condition that occurs when the “sutures” (the seams where bone plates join) in the skull fuse before birth instead of gradually over years and through when all head growth is complete.

“I did a ton of research on it,” says Edna. “I immediately got into a support group and posted a picture of his head, asking ‘Did any of your babies look like this? We’re going to Nationwide Children’s.’ I got so much support and in fact someone commented, ‘My baby had the same thing and now I work there.’ She was so helpful in telling me about options and giving me the run-down of how the process works, mom to mom.”

During what can be a terrifying event for an infant’s family, Liam’s mom was able to keep her stress level under control. “We felt that the doctors were so forthcoming and thorough in answering all of our questions. They kept us updated regularly during surgery and were great at texting us at specific stages.”

Liam came through just fine! His mom says that his head surgeries was the scariest out of all 11 of his surgeries but it was also the one from which he most quickly recovered. “It’s very stressful to think that your baby is going to have his head shaved and his skull cut open—and it is so scary—but it heals so fast.”

Today, 18-month-old Liam is thriving. His mom says he’s the happiest baby she’s ever seen. He loves cars and tractors and anything else that rolls. He sings all of the time and says lots of words for such a little boy. Most of all, Edna says, “He’s simply a blessing.”

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