Care Bears for Children with Craniosynostosis Surgery

We are the Scott Family, and we are raising funds to bring comfort to young children undergoing craniosynostosis repair surgery at the Children’s Hospital of Philadelphia! This cause is deeply personal to us—as our youngest son Nolan underwent this surgery at age 3 and we saw firsthand how much a simple stuffed animal could mean during such a difficult time. The stuffed animals provided him with comfort, courage, and a sense of security throughout his healing journey.

Craniosynostosis is the abnormal early fusion of 1 or more of the bones of the skull before the brain is fully developed in size, which can impact the size and shape of critical areas of the brain. If untreated this can lead to neurologic, visual, and learning challenges. It most often requires 1 or more complex neurosurgeries, along with close monitoring with specialists such as neurosurgeon, ophthalmologist, and plastic surgeon.

For most children, this is identified and corrected in infancy. For Nolan, his case was a less typical presentation that was not diagnosed till age 3. Fortunately, Nolan came through surgery with flying colors, and is doing fabulous! Most people would never know that he had this condition or underwent major surgery, with the exception of his ear-to-ear lifelong zig zag scar (which his longer wavy blond hair covers up!).

For children that have this surgery when they are older, there are unique challenges to navigate, as they are aware of what is going on & remember it! This includes significant changes in their appearance, severe swelling of their face impacting hearing & vision, and a multi-day hospital stay with lots of lines & tubes! For Nolan, being gifted a special stuffy during his stay was SOO key to lifting him up during this hard time!!

And now, 2 years later, older and wiser Nolan has of late been working to make sense and meaning of this major experience. To help him do so, we found and purchased a bear with the SAME ZIGZAG scar that he has! Nolan named it "Scribby" as he affectionally refers to his scar as his "scribble," and has since been more empowered to talk about his scar and experience.

We want to ensure that every child facing this surgery at the Children’s Hospital of Philadelphia receives a stuffed animal with the same scar they have, so they feel not alone in this journey. Nolan expressed his desire to provide "Scribbies" to other young children going through the same surgery. To do this, we are working to gather donations to pay for costs of ordering & delivery of these customized stuffed animals. We plan on delivering them directly to the hospital, working closely with staff to get them into the hands of children who need them most.

The outpouring of love and support rallied around Nolan & our family during this time was HUGE. Now, safely and soundly further down the road from this journey, we are eager to give back to others! Our goal is to raise enough money to purchase & donate 10 bears.

Thank you for your time & support!

For more information on the organization that creates these products & other care packages, including other ways to donate:

https://craniocarebears.org/