On April 28th 2017, our beautiful daughter Bellamy was born.  During my pregnancy when the doctors were reviewing my ultrasounds they noticed something wrong, a shadow they called, with the baby’s skull, but could never get a clear picture to be able to verify. They told us we would just have to wait and see when she was born.  When they laid her on my chest it was very apparent that her skull was deformed, other then that she seemed perfect.  At one day old Bellamy got her first CT and MRI scans done and it was determined that she was born with multi-suture Craniosynostosis, bi-coronal and right lambdoid.  They told us that because the right coronal suture had fused so early on, that’s what caused her to have what appeared to be a dent in her head.

We ended up at Motts Children’s Hospital in Ann Arbor Michigan (we’re from Ohio) as we were told they were the best place in our area to seek treatment for cranio, and they were slightly baffled by her diagnosis, not the cranio as they see that a lot, but by the combination.  They told us they had never seen that before, and they would have to modify their usual procedure to help Bellamy, almost an experimental type situation and they have been ecstatic with her progression. They told us she would have to undergo multiple surgeries, and do many other tests to make sure she was developing correctly. The first surgery was October 18th 2017, she underwent a posterior cranial distraction, they attached these metal distractors to the front of her skull, and we used these to slowly push out the back of her skull and give it a more rounded shape.  They cut a large circle into the back of her skull which is what we were moving with the distractors to allow her brain more room to grow, and to help a slight chiari malformation she had due to the lambdoid suture fusing.  She had the distractors removed in February 2018.

November 14th 2018 she had her frontal orbital advancement surgery. They corrected the flatness of her forehead and gave her a head a more normal round shape. This surgery was a lot longer than her other’s at 7 hours long, but she came out of it like the little trooper she is, she was very frustrated though that she couldn’t see anything since her face was so swollen.

She’s currently 2 years old and besides the scar along her skull you’d never know that she was born with any deformities.  The only developmental issue we have run into is a slight speech delay, but they told us that is fairly common with this condition and we are getting speech therapy to correct it. We were told that she may need an additional surgery at 7/8 years old if things are not forming correctly but we are hoping that it won’t come to that.