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Noah | Cranio Care Bears
Our third child, Noah, was born full term via a scheduled induction in August 2024. His birth was vacuum assisted because of his head shape, but at the time we did not know he had cranio. To spare many details, Noah ended up getting admitted to the hospital at age three weeks for a full work up of medical tests to investigate another birth defect he has. This is when the diagnosis of Sagittal Craniosynostosis became official. At this point, we honestly thought his head shape was a bit off from the birth and it was not even on our radar that it could be something more. Because Noah was so young, we chose to do the endoscopic strip craniectomy surgery. He had surgery at the age of seven weeks old on September 24, 2024. The surgery took 4.5 hours and Noah did beautifully. The surgeons said everything was straight forward and that they had no issues. We stayed in the hospital for two nights before discharge. Noah got set up with the orthotics clinic a few days later to be fitted for his helmet. His first helmet (Auburn Tigers) was worn for six and a half weeks, his second helmet (Toy Story) was worn for eleven weeks, and he is now wearing his third and hopefully final helmet (NASA Space Astronaut). His head shape looks amazing and we have been so impressed with our orthotics clinician. I was nervous about helmeting at the start of our journey, but it has been great for Noah and we have felt very supported by our medical team. My older children have loved picking out the decals for each helmet, it has started great conversations in public about craniosynostosis, and let’s be honest…babies in helmets are very precious! Noah still has some challenges ahead of him with other birth defects he is managing, but we know he has a great story to tell of bravery, strength, and overcoming challenges. What a gift our brave boy is to the world! We are thankful for God carrying us and sustaining us through our cranio journey, access to great medical care, support from friends and family, and the online cranio community. A few pieces of advice for other families newly diagnosed with cranio: keep advocating for your kiddo, ask the surgeons plenty of questions (it will put you at peace to ask everything in your head), lavender baby soap makes the helmet smell much better, a stroller fan works great for drying the helmet, and find your people (no one should have to get through this without the support of a community). We wish you the best of luck in your journey!
Hospital – Vanderbilt Children’s in Nashville, TN (Plastics – Dr. Pontell & Neuro – Dr. Bonfield)
Orthotics – Hangar Clinic in Nashville, TN (Helmet Clinician – Jason Ramsey)
Our third child, Noah, was born full term via a scheduled induction in August 2024. His birth was vacuum assisted because of his head shape, but at the time we did not know he had cranio. To spare many details, Noah ended up getting admitted to the hospital at age three weeks for a full work up of medical tests to investigate another birth defect he has. This is when the diagnosis of Sagittal Craniosynostosis became official. At this point, we honestly thought his head shape was a bit off from the birth and it was not even on our radar that it could be something more. Because Noah was so young, we chose to do the endoscopic strip craniectomy surgery. He had surgery at the age of seven weeks old on September 24, 2024. The surgery took 4.5 hours and Noah did beautifully. The surgeons said everything was straight forward and that they had no issues. We stayed in the hospital for two nights before discharge. Noah got set up with the orthotics clinic a few days later to be fitted for his helmet. His first helmet (Auburn Tigers) was worn for six and a half weeks, his second helmet (Toy Story) was worn for eleven weeks, and he is now wearing his third and hopefully final helmet (NASA Space Astronaut). His head shape looks amazing and we have been so impressed with our orthotics clinician. I was nervous about helmeting at the start of our journey, but it has been great for Noah and we have felt very supported by our medical team. My older children have loved picking out the decals for each helmet, it has started great conversations in public about craniosynostosis, and let’s be honest…babies in helmets are very precious! Noah still has some challenges ahead of him with other birth defects he is managing, but we know he has a great story to tell of bravery, strength, and overcoming challenges. What a gift our brave boy is to the world! We are thankful for God carrying us and sustaining us through our cranio journey, access to great medical care, support from friends and family, and the online cranio community. A few pieces of advice for other families newly diagnosed with cranio: keep advocating for your kiddo, ask the surgeons plenty of questions (it will put you at peace to ask everything in your head), lavender baby soap makes the helmet smell much better, a stroller fan works great for drying the helmet, and find your people (no one should have to get through this without the support of a community). We wish you the best of luck in your journey! 
