Through Cranio Care Bears, these moms offer never-ending amounts of support to other families going through the process of Craniosynostosis, including their famous care packages!
It's likely that you've never heard of Craniosynostosis before — in fact, it's likely that even your pediatrician isn't familiar with this rare condition. However, to the families who are facing Craniosynostosis head on with their newborn or infant (approximately 1 in every 2000 children are born with Craniosynostosis), it is a very real and very scary diagnosis. According to CranioKids, a support website for families of children with Craniosynostosis and the organization that brought Cranio Care Bears founders, Summer Ehmann and Shelby Davidson together, Craniosynostosis can be described in this way:
"In an [typical] infant, the skull is not a solid piece of bone, but several boney plates separated by fibrous sutures. These sutures allow the skull to expand as the brain grows, and will eventually fuse to form a solid skull. [For children with this condition,] Craniosynostosis is a condition in which one or more of these sutures fuse prematurely, causing restricted skull and brain growth."
While the exact cause of Craniosynostosis is not known, some cases can be linked to a genetic disorder and in most cases, a diagnosis also leads to surgery, which is used to open up the child's skull to allow for normal growth. Early detection and surgery is the best treatment for cases of Craniosynostosis, to prevent permanent damage from the brain not having room to grow.
Both moms of Craniosynostosis babies, Summer and Shelby have sons who are now on the other side of their cranio surgeries.
Summer's son, Brentley, was born in June 2010. After a complicated diagnosis process that included multiple misdiagnoses, CT scans and eventually a push from Summer to reevaluate his scans after doing some research herself online, Brentley was determined to have an extremely rare form of Craniosynostosis called Frontosphenoidal, which was only the sixth case diagnosed worldwide. At just over four months old, Brentley had surgery at Denver's Children's Hospital and will be celebrating a healthy third birthday this summer.
Anthony, or AJ, as he is lovingly known as, Shelby's son, came to his Craniosynostosis diagnosis another way — born in January 2009, his parents noticed a ridge along his skull, which lead to his diagnosis and surgery at nine months old at Seattle's Children's Hospital. "At first I cried," Shelby shares about seeing AJ for the first time after his surgery. "He looked so different. His head was no longer narrow in the front, it was nice and round!" Having just celebrated his fourth birthday, AJ's experience helped inspire Shelby's vision for Cranio Care Bears. She says, "After our time at Children's was over, I vowed to never let another family have to go through this alone."
And, Shelby kept that vow, mentoring other Craniosynostosis families who needed support during their diagnosis and surgeries, both locally (in Seattle) and online, which is how she met Summer. From there, the story of Cranio Care Bears becomes one of "paying it forward." Shelby had sent a care package to a mom in Nebraska for her son's upcoming surgery and this woman, in turn, sent one to Summer before Brentley's surgery. In that moment, the vision for Cranio Care Bears was born. "It came full circle," Shelby and Summer share.
Now, Cranio Care Bears sends 70-80 pre- and post-surgery care packages to families with children with Craniosynostosis diagnoses. Each care package includes items that are both comforting and useful for the parents and the babies to endure those long appointments with specialists, the countless CAT scans and the wait time during the multi-hour cranio surgeries.
Packages often include handmade blankets, age-appropriate toys, snacks for moms and dads and a soothing lullaby CD to play in the hospital. Summer and Shelby often customize the packages for children who are older when they have their surgery — each box is hand-picked and hand-packed by the founders.
Cranio Care Bears goes beyond the care packages. Volunteers also hand-make custom prayer chains to send to families who request them, sending out 700-900 prayer links each month with encouraging sayings and motivation for families who are in the thick of their Craniosynostosis journey. In addition, Shelby and Summer both offer families who live locally (Seattle and Denver, respectively) one-on-one support before, during and after their child's surgery. "We, personally, have attended 24 surgeries," they share. "We also offer support through emails, texts and phone calls [for families] all over the world."
While care packages and support for families is number one on the list for Cranio Care Bears, awareness for Craniosynostosis is also a high priority for Shelby and Summer. "One of our biggest dreams is for Cranio Care Bears flyers to be in cranio facial clinics and pediatricians' offices all over," Shelby tells us. And, once families do arrive at their Craniosynostosis diagnosis, they hope that they are well aware of the support that's available to them through Cranio Care Bears. "We have plenty of families requesting after-surgery packages who say that they wish they'd known about us before their surgery. It's always hard to know that they could have had our support, but didn't know it was there."
Cranio Care Bears is always looking for items to add to their care packages and you can find an ongoing list of items that they need on their website. One of the biggest expenses Cranio Care Bears faces is the constantly rising cost of shipping their care packages to families across the nation — if you don't have time to pick up care package items, donations toward shipping are always appreciated.
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