Also new. Son diagnosed at 10 days old.
I'm so glad to find this site. Our second son has left coronal. We are grateful there is something to help him.
I delivered on the floor where I work and once all my coworkers cleared the room to let us rest, I really had time to look at Rohan and see that his face was really crooked. It wasn't just swelling either, the bones felt uneven. In the back of my mind, I said "He has cranio" as I had seen this one other time. I envisioned all these surgeries and such until the pediatrician came in. He reassured me that the asymmetry was just because of the way Rohan was stuffed in my pelvis. He had been all in one place and very low, so that made sense.
Over the next couple of days, His face seemed to level out a bit, but it was still visibly asymmetrical. Our pediatrician was out of town and when we went in for his 3 day check up, the doctor standing in for her said the same thing as the ped in the hospital, but suggested we come back for our 2 week appt early since we were so worried.
At 10 days old, we arrived for our appt, sure that our ped would say the same thing as the other two. She did not. She took some photos of his head and consulted a geneticist while we were there. We did x-rays and the skull asymmetry was really obvious, even to my untrained eye. A CT scan was next and that clinched it. Unlike so many of the posts I've read here, she called me from home that day to tell me that the CT showed left unicoronal synostosis. I'm grateful she was so on top of everything.
We had an appt with the neurosurgeon and plastics on Monday. We had researched on the internet and were sure we could do the endoscopic procedure. Even though the NS uses that procedure for many other cranial surgeries, he did not recommend it for our son. The CVR sounds so horrible! When we researched exactly what bones were removed, reshaped, and replaced, it was WORSE than we had envisioned from the two doctors' descriptions.
We know he's in good hands and there is no way we would let this go uncorrected, but the surgery sounds so awful! We are still trying to get our brains around it and what will happen with our beautiful boy.
He has to have a consult with an ophthalmologist in a few weeks as his eyes are not tracking together either. It's all so scary.
Glad I've found this group and we are looking forward to reading this board who are kind enough to post their experiences.
Thanks!
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