Our pediatric doctor referred us to a pediatric plastic surgeon in town to get Eli's head evaluated -- it has been a little misshaped since birth. We thought nothing of it, maybe he would need a helmet, that would be fine. But it turns out he has something called Unicoronal Craniosynostosis, which can only be fixed by surgery.
The doctor believes one of the sutures, the top right one, in Eli's skull has prematurely fused together, resulting in the misshape of his head and brow. Untreated it could cause major deformities in his head over time, including all the way down to the jaw. This condition cannot be fixed with a helmet. Surgery is the only option. Thankfully the doctor said the condition and surgery are not life-threatening.
First things first, Eli will be getting a CT scan in the coming weeks to confirm the fusion. Next he'll see an opthamologist by recommendation from the plastic surgeon to make sure there is no abnormal pressure on his brain and eyes. Then we'll meet the neurosurgeon at the hospital who will be assisting the plastic surgeon (craniofacial surgeon). Then bloodwork and cranial surgery this summer, when Eli is 5 or 6 months old. The surgery itself will last about 3-4 hours and Eli will stay in the hospital for recovery for 5 days. He will be monitored by the doctor until his teenage years, but the surgery should take care of the condition without need for further correction.
The condition is not super common, but not super rare either. Apparently it is something he just has. We didn't do anything to cause it.
Eli is doing well and does not seem to be in any pain. Except for the shape of his head and brow he seems to be completely normal. Counting my blessings!
Adam and I are doing fine after the initial shock of hearing the news. Of course we are worried and nervous partly because any outcome has some uncertainty, but we are also at peace because we know our Father in Heaven loves us and Eli and will take care of him, and that he will be in the hands of very capable doctors. How grateful I am for modern medicine and medical knowledge and the doctors who train to serve in our communities! My faith in Jesus Christ is strengthened through this, shall we call it, trial. He makes it easier for us to witness our son go through this.
Everything should turn out fine. This just isn't something you want to watch your child go through. We're holding him extra close today!
We love Eli so much! I'm glad we don't have to go through this alone. Thanks for your thoughts, prayers and support.
