It’s hard for a mother to let a doctor poke, prod and perform procedures on her child.
It’s even harder when that procedure includes surgery and cracking her 11-month-old daughter’s skull open.
“This, by far, was the most emotionally challenging experience I’ve been through, and I hope it’s the last,” Ashley Honeycutt, 24, said of daughter Ava’s surgery in June.
Ava turned 1 on July 8.
Ava has craniosynostosis, a condition in which a child’s skull sutures fuse much earlier than they should. This prevents the child’s head — brain and skull — from growing properly. This leads to pressure on the brain and could lead to developmental problems.
The doctors cut and peeled back Ava’s skin to expose the skull. They then broke the fused sutures and set Ava’s skull with plates and bolts.
They hope this is the only surgery Ava will face, but Honeycutt said it’s not uncommon for children to need two or three surgeries as their heads grow and need resetting.
So doctors and Honeycutt will keep tabs on Ava over the next three years to make sure her head is growing and moving in the proper direction.
Despite the support of friends, family and coworkers, Honeycutt felt alone.
“It left me feeling so alone and helpless ... without knowing people who had been through this,” she said.
Honeycutt said diagnoses of craniosynostosis occur in 2,000 to 2,500 infants, though it occurs often in older children, too.
She said many pediatricians don’t diagnose the condition early enough, so a lot of 2- and 3-year-olds go in needing surgery. “Surgery really needs to be done by 1 because of growth. A baby’s head grows so much in the first year,” she said.
Honeycutt started looking for ways to reach out.
“What I wanted most was a mother’s perspective, not a doctor’s perspective,” she said.
She mentors and volunteers with various organizations that educate and support families with craniosynostosis.
And, with the help of Meg’s Gifts in High Point, Honeycutt is launching Ava’s Elephants.
Honeycutt collects the names and addresses of families facing cranio surgery and sends them a blue or pink elephant with the child’s name monogrammed on an ear.
In just two weeks, Honeycutt had already sent 10 elephants.
Ava’s Elephants is a perfect fit for Meg’s Gift, said owner Tami Hendrix. Though it’s a gift shop, the business also focuses on greater giving, such as Meg’s Community Garden, which donates produce to a local homeless shelter.
Hendrix recalled the story Honeycutt told about Ava’s recovery. “All she wanted was something to rub that was soft. It dawned on (Ashley) that others would be going through that as well. She said she just wanted to give back, and that was right up our alley,” Hendrix said.
The elephants usually are $14; shipping varies but usually is about $6.
Meg’s Gifts, which sells the elephants, provides the monogramming free of charge. Donations help pay for the elephants and shipping.
Knowing how she felt during Ava’s surgery, Honeycutt said, “I don’t want that for another mom. ... I’m trying to lessen the emotional roller coaster before surgery.”
Contact E.A. Seagraves at 373-7109 or elizabeth.seagraves@news-record.com
What: Ava’s Elephants, a new organization that sends stuffed elephants to families whose children will undergo surgery for craniosynostosis.
How: Mail donations to Ava’s Elephants, P.O. Box 6437, High Point, NC 27262.
Information: Call Meg’s Gifts at 886-6347.
Craniosynostosis and Positional Plagiocephaly Support Kids: cappskids.org
Jorge Posada Foundation: jorgeposadafoundation.org
Cranio Angel Network: cranioangelnetwork.com
Cranio Care Bears: craniocarebears.org
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