By Vanessa Radatus
On January 10, 2009, Ballard resident Shelby Davidson delivered her son Anthony by an emergency C-Section. After minor complications, she finally held him for the first time, relieved to see that he was perfect.
Four months later, however, she realized something was wrong. A sharp ridge was developing in the middle of her son’s head.
Shelby, 33, said she immediately took Anthony to see his pediatrician, who referred her to Seattle Children’s Hospital’s craniofacial clinic. Here she met Dr. Charlotte W. Lewis, who diagnosed Anthony with Sagittal Craniosynostosis. Shelby and her family had never heard of this rare condition before and learned the baby would need a five- to eight-hour surgery.
“It’s a parent’s worst nightmare to hear that your baby is going to need major surgery,” Shelby said. “The worst part is that I had no idea what to expect and the doctors could only explain so much.”
Craniosynostosis is a birth defect that affects 1 in every 2,000 births, where the sutures that connect individual skull bones on an infant’s head close prematurely. If not corrected, it stunts normal brain and skull growth. As the skull bones fuse early, pressure on the brain causes skull and facial bones to change from their normal, symmetrical appearance.
Symptoms vary from case to case but often an infant will have an unusually shaped head, an absence of the “soft spot” or a raised ridge along the affected sutures months after they are born. In rare cases, the deformity causes pressure to build up on the baby’s brain, which can cause brain damage, vision and hearing loss and make the baby develop more slowly than other children, Shelby said. Even more, hundreds of Craniosynostotis cases go misdiagnosed each year because of lack of awareness.
The birth of a movement
Shelby said Anthony’s operation day was the worst day of her life. What kept her together was the support of an online support forum, craniokids.org, and also having a friend to help her through the process. “My high school friend Amy King took off work to sit with me during surgery,” Shelby said. “She stayed with me and went everywhere I went. She was there for me! She didn’t know what I was going through but she was there and that meant the world to me. She is my inspiration for being there for other moms.”
After Anthony’s successful five-hour surgery, Shelby was able to hold him and see his transformation. But nothing could have prepared her for what she would see. Anthony had an ear-to-ear zigzagged incision over the top of his head and his face looked completely different.
She said, “The doctors didn’t tell me, your baby is going to look different when you see him. That’s the hardest thing. The entire shape of his face changed and was so swollen he couldn’t open his eyes or mouth. I actually felt disconnected from him for the first few days after his surgery. I would look down at him and say, ‘That’s not my baby.’ You go through a lot of difficult emotions.”
During the recovery process, it usually takes a week for kids to start smiling and playing again. But Shelby’s hospital stay with Anthony was anything but comfortable. Shelby watched her son through every stage of recovery and admits it was emotionally exhausting. Today, Anthony is fully recovered.
The experience inspired Shelby to start Cranio Care Bears in her Ballard home, a non-profit support organization that has helped more than 500 families worldwide in just one year. And it all started with one simple care package.
But it’s more than just a package
Shelby sent her first care package to a family she learned about on craniokids.org. She had no idea that it would lead to the largest support program for Craniosynostosis. She then sent another care package to a family in Nebraska who was so touched by the gift that they used craniokids.org to send a care package to a woman whose son was undergoing cranio surgery in Colorado. That woman, Summer Ehmann, partnered with Shelby to create Cranio Care Bears with the goal of helping fellow cranio families around the globe.
Summer’s son was diagnosed with Frontosphenoidal Craniosynostosis which is only the sixth case in the world. When her son Brentley was born, Summer knew something was wrong but for months, several doctors misdiagnosed him. When her son finally got surgery she said the care package made her feel so comforted that a complete stranger would send you something so personal. “When you experience something like this, you feel this passion to help people in the same situation. It’s been such a blessing. It changed my entire purpose in life,” she said.
Each care package is uniquely filled with an array of handmade baby hats, blankets, prayer ribbons, books, CD’s, Starbuck Via packets, shampoo and conditioner, food and much more. But more than the contents of the package, the families have expressed that the act of kindness from other families has created an unrivaled bond. “I just thought of everything I wished I had when I was staying at the hospital for five days straight,” Shelby said. “The items are simple, but they make a huge difference to each family.”
One of first recipients of Shelby’s care packages was Candace Kepler, who came to Seattle Children’s Hospital from rural Montana with her twin sons, both born with Craniosynostosis. “The whole ordeal was so scary for us but Shelby was there for us the entire time. She met with us to talk and give us our care package,” Candace said. “The most amazing part was that was there with me on the day of the surgery to help me with every step along the way and now we continue to be very good friends.”
And Candace is not the only one. Shelby has been there for 15 families one-on-one for each lengthy surgery at Children’s Hospital. One Lynnwood mom, Karissa Palmar, explained that her experience at Seattle Children’s with Shelby was indispensable. She said, “Shelby not only gave us a care package. She was there with us throughout the entire hospital stay. She answered all my questions and gave me hope that my baby would survive. She helped me through the unknown.”
While the care packages do bring comfort and encouragement, it is Shelby’s genuine passion to help people that has created friendships with families worldwide.
From Shelby’s perspective, she said she has been amazed how she and Summer’s help has sparked an extraordinary effect in families. Many have even gone to great lengths to show their appreciation. “We don’t have many main organizations that donate to us. It’s families that we’ve helped or sent a package to. They want to pay it forward so they collect items or fundraise for us. Sometimes I’ll come home and I’ll have huge boxes on my front porch from people I’ve never met, but want give back to us.”
Join the Cause
Cranio Care Bears has expanded dramatically in its first year. What started out as one care package has turned into 50 to 60 monthly shipments of personalized packages sent throughout the U.S., Australia, South Africa, England and Canada. Summer and Shelby both say they just can’t turn anyone down.
As demand for their care packages have grown exponentially over the past year, Shelby said she loves what she does but could use some help (and literally anything helps). She said Cranio Care Bears has received generous donations from Garnier Fructis, who sent shampoos and conditioners, Build-A-Bear, who sent 20 teddy bears, and Kids In Distressed Situations (K.I.D.S.) which sent 300 pairs of Stride Right shoes and Robeez for the care packages.
“One of the most amazing things is we’ve had families fundraise for us on their kids’ first birthdays. Instead of gifts they asked for family and friends to bring either product donations or checks for us and then they send it to us in honor of their child that we helped,” Shelby said. “One organization, I Love to Crochet, did an auction for us and raised $600 which is just overwhelming that they would do that for us.”
Last November Shelby and Summer held a Facebook Auction to raise funds to get their 501(c)(3) and become a certified non-profit organization. They took pictures of all the items and services that friends and families donated and created an album where people could bid. They raised nearly $3,000 and are now in the process of receiving official nonprofit status.
How you can help
Every day people are reaching out to help Cranio Care Bears help more families and you can join. Whether it’s collecting unopened hotel shampoo bottles, making crotchet hats for babies or simply making cards or prayer ribbons, any act of kindness keeps this organization breathing and flourishing.
With shipping and fabric being their biggest expense, Shelby said that “a $5, $10 or a $20 donation helps us continue to ship our packages around the world,” she said.
Since the formation of Cranio Care Bears, Shelby, Summer and hundreds of families have spent this past year thinking, breathing and living Craniosynostosis and want make their voices heard around the world. Their mission is to continue spreading awareness and helping more families.
Cranio Care Bears has sparked a steadfast circle that keeps giving and Shelby and Summer say it not only benefits the families, it has given them true purpose in life. “Helping families through this has given me passion in life,” Shelby said. “I just want to support them and let them know that their baby is going to be OK. I think it’s easy for me to comfort mothers because I’ve had the same feelings, I know exactly what they’re going through and I think its comforting for them because I have been there and my baby survived. I just don’t want any family to go through what I went through by themselves.”
(Contributor Vanessa Radatus is a student in the University of Washington Department of Communication News Laboratory.)