Shelby Davidson and her son, Anthony, at his 18 month post-op following major skull surgery. After her experience, Davidson vowed to not let other families go through the scary process feeling as alone as she did.
Ballardite sets out to raise awareness about craniosynostosis, help families facing surgery
In October 2009, Crown Hill resident Shelby Davidson, took her four-month old son to a physician for a regular baby check-up. She had noticed that her son's head had formed a ridge and expressed this concern to her physician.
Referred to Seattle Children's Hospital for a scan, Davidson learned that her son had craniosynostosis and would require a surgery that involved taken apart her son's skull and remolded it to make room for the brain to grown properly.
Scared, Davidson searched the web for any information she could find about craniosynostosis and for other families who had gone through this with their child.
Craniosynostosis, she learned, is a birth defect which causes one or more sutures on a baby's head to close earlier than normal. Sutures are connections that separate each individual skull bone. The early closing of a suture leads to an abnormally shaped head. If left untreated these children face a possibility of brain damage, eye sight trouble and potential death from inner-cranial pressure.
"I didn't know anything about cranio when my son was diagnosed and we felt very alone," Davidson said.
The surgery went well and her son, Anthony, is doing great. But after her experience, she vowed to help other families through the scary process.
"After our experience I promised to not let other families go through it alone. I want to help them feel not so alone like we did," she said.
Together with two other "cranio moms", Davidson founded Cranio Care Bears, a local nonprofit that sends care packages to families whose babies are facing major skull surgery.
"Going through this is scary for families and we try to ease their worry by providing them with things they will need to bring to the hospital," Davidson said. "We also mentor several families and help them cope before, during, and after the surgery."
Davidson said one of the biggest shocks for the parents is how their child's face might change after the surgery.
"The skulls gets reshaped during surgery and many look different afterwards," Davidson said. "No one prepares you for that. Not even the doctors. It's hard."
Davidson and her partner in the Tri-Cities send out up to 40 packages per month to families all over the world.
"I'm just paying it forward because I would have wanted someone there with me," Davidson said.
Davidson said that after the surgery, the children will have "gnarly" scars and one of the popular items in the care package is a fuzzy hat that her partner makes for kids to wear after the surgery.
Dawn M. from Scotland is one of the many who wrote Cranio Care Bears a Thank You note after her son's surgery and attached a photo of her son proudly wearing his new hat.
"The support you all gave my family was amazing," she wrote. "And I cried when I received our care package as there was so much wonderful useful things in it that you people give to help folk for free, i think you are truly amazing and we thank you from our hearts."
"It feels good to know that your not alone in these types of situations, that there are people out there who don’t personally know you and care. It brought tears of joy to my husband and I, when we received the care package," another parent wrote.
Davidson said these Thank You noted are overwhelming and very rewarding.
"I plan on doing this as long as I can," Davidson said.
To learn more about Cranio Care Bears, visit www.craniocarebears.org.