TODAY Show: How this mom and baby are demystifying cranial helmets
By Terri Peters
When Abby Storey was 28 weeks pregnant with her son, Jackson, she and her husband, Jordan, learned their baby had a rare genetic disorder that causes weak bones and is often called "brittle bone disease."
Doctors told the Storeys there was a chance Jackson would not be able to breathe at birth due to weakness within his chest wall, leaving the couple to handle the devastating prospect of losing their child.
Jackson was, however, born with multiple broken bones due to his genetic disorder, stage 3 osteogenesis imperfecta (OI).
Storey also noticed the back of Jackson's head was flat. After spending eight weeks in the NICU, he had to spend a lot of time resting on his back while healing.
Eventually, Jackson's doctors suggested he begin therapy with a helmet to treat his cranial plagiocephaly, a condition that can affect any baby and occurs when an infant develops a flat spot on part of their head.
In October 2020, when Jackson was 8 months old, he began treatment with Shannon O'Shea, a prosthetist and orthotist at a Hanger Clinic location within Children's Mercy Hospital Kansas City.
O'Shea, who has studied the use of cranial helmets to treat babies with OI, created a special helmet for Jackson that separates into two sections so he can be gently placed into it before the top is attached.
Storey said she often gets questions about her son's helmet and why he needs to wear it.
So what advice does Storey have for parents who are considering a helmet for their baby?
"Just take it day by day," she said. "I have really enjoyed using it, and it has helped him immensely. And, view it as a positive thing because it is a positive thing."
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Learn more about the Hanger Clinic at Children's Mercy