Jameson was born in January of 2012 with Pfeiffer syndrome. We had no idea about craniosynostosis or Pfeiffer syndrome when he was born. Pfeiffer syndrome and craniosynostosis are almost always random genetic mutations, where there was nothing that caused it to happen, it just happened. We were shocked and in awe of our new addition. In the early months it was his strength and resiliency that guided us through. We quickly learned about craniosynostosis, the premature fusion of his skull bones, and Pfeiffer syndrome, one of many rare syndromes associated with craniosynostosis.
There are many health conditions that are associated with Pfeiffer syndrome, that affect nearly every part of their body. Other bones may also be fused in addition to their cranial sutures. Children with Pfeiffer syndrome are monitored for increased intracranial pressure, the development of chiari malformations, hearing loss, problems with their vision, dental issues, patent airway, and digestion complications, just to name a few. Many children with Pfeiffer syndrome are in physical, occupational, and speech therapy to help them reach milestones. Each child with Pfeiffer syndrome is unique with their development, but they can also share many of the same experiences. Children born with Pfeiffer syndrome with undergo multiple surgeries growing up.
In Jameson case, he was born with both of his coronal sutures fused, he also has fusion on three of his fingers on both hands (his PIP joints), the tell-tale Pfeiffer’s thumb that deviates outward, webbing in his toes, and mild-moderate hearing loss. The goal with our medical interventions have been to monitor Jameson’s growth and development, only intervening medically when necessary.
Jameson underwent his first cranial vault reconstruction and frontal orbital advancement when he was 11 months old, and his second when he was 2 years old. Jameson has had four sets of tubes placed in his ears, and currently wears hearing aids. He has had his tonsils and adenoids removed and suffers from severe sleep apnea. That surgery did not provide the improvement we had hoped, and the next step for Jameson is to get a tracheostomy – a tube placed in his throat to bypass his upper airway so he gets the oxygen he needs while he sleeps. Jameson will also need more surgeries in his future to expand his skull and mid-face. The biggest surgery for him will be a mid-face distraction that will pull his facial bones forward.
About 6 months ago we found out that a photo of Jameson from my blog was taken and turned into a cruel meme, making fun of Jameson’s appearance. Over the years we have dealt with the whispers stares when we’re out in public. We have learned how to approach these situations, and have become comfortable talking to others about Jameson, Pfeiffer syndrome, and that he is just like any other kid on the inside. Jameson is a fun-loving little boy, who loves causing trouble! He is truly a joy to be around, and brings a smile to everyone’s face. We understand that sometimes people may not quite know what to say or do when they notice him and are curious, so we try to break the ice, because once you get to know him you realize that he is just like every other little boy. But, we weren’t prepared for a cruel meme of our son to be shared 100,000’s of times on various social media sites. We have been doing our best to remove each one we see on social media, but this experience has inspired us to do more and reach out to the world in hopes of raising awareness and education about Pfeiffer syndrome and craniosynostosis.
The proceeds of this shirt will go to Jameson’s Journey, a non-profit who’s vision is to share life’s journey and bestow a brighter future for children with craniofacial differences; and mission to serve as a source of strength and support for families affected by craniofacial differences, provide escape and respite from caring for medically complex warriors.