Aspyn’s journey with Metopic Craniosynostosis

When I got pregnant with Aspyn I didn’t even think there would be anything wrong while my pregnancy developed. I had 2 previous children that were born 100% healthy so ignorantly I thought “this pregnancy will be the same” but looking back I feel so stupid for even thinking that way. I was lucky to have 2 pregnancies where the end result was healthy & full term babies. When they first told me something could be wrong with Aspyn I was only 13 weeks. We originally thought it was her kidney & heart that would have problems after birth but those issues seemed to just vanish when she was born. By “vanish” I mean her kidney & heart were functioning properly so there was no need for medical intervention. We dealt with her glucose levels in the NICU for 3 days and had the best nurses and doctors working so hard to get her healthy. The doctor did let us know that her head shape was looking abnormal and he had made a call to a specialist (neonatal neurosurgeon) down in Denver. They provided us with a packet about Metopic Craniosynostosis when we were discharged and I remember looking at the packet thinking “her head looks nothing like that”. We had never heard of Craniosynostosis before & when doing a little research on the issue we didn’t realize how common some cases actually are. Metopic Craniosynostosis is the rarest form of Craniosynostosis so seeing those stats didn’t help me come to terms with the whole thing.

We met with the neonatal neurosurgeon down in Denver a week after she was discharged and she confirmed the same as our NICU doctor, Aspyn had Metopic Craniosynostosis possibly even another form of Craniosynostosis as well. Just to give a little review of what Craniosynostosis is let me explain. Craniosynostosis is a birth defect (sometimes genetic) where the sutures in the babies skull fuse before they’re supposed to. You know the soft spot on a babies head that allows room for their brain to grow? Well when the sutures fuse prematurely it doesn’t allow proper room for the brain to grow causing developmental delays & other horrible side effects like blindness. There are many different sutures in the skull & depending on which suture is fused determines the type of Craniosynostosis a child has.

Along with developmental delays the pressure from the misshapen skull can cause Cognitive impairment, seizures & even in the worst cases-death. The only way to fix Craniosynostosis is surgery. Depending on how severe it is depends on if the surgery will be endoscopic or open skull. That’s a brief explanation of Craniosynostosis.

As the weeks went on her head did start to show signs of abnormality, I just kept thinking somehow it would just magically change or fix itself. We had a follow up appointment with the neonatal neurosurgeon at 4 months where she set up a CT scan for the following month. The CT scan confirmed what the doctor already knew, Aspyn’s frontal sutures on her skull had already been fused shut. The good news was it was just the frontal and none of the other remaining sutures in her skull so they would only need to focus on the frontal during surgery.

These are the images from Aspyn’s CT scan. The other sutures are visibly there but the frontal (Metopic) is clearly fused when comparing to the other sutures.
You can tell by looking down at Aspyn’s head shape that it’s extremely pointed in the front

They scheduled her surgery date & time after the CT confirmed what we already knew and it’s honestly felt like time has just been dragging on. I was in such shock after the 4 month visit I didn’t even know what questions to ask. After the fact it all hit me like a freight train which made managing my emotions about it harder. I just couldn’t believe my baby was going to have to endure such a hard surgery. Not doing surgery was out of the question since Aspyn was looking at blindness (confirmed from her CT scan) & tons of developmental/cognitive delays. I know we’re doing what’s best for our daughter but it hurts my heart so much to know she has to go through this.

They will do what’s called a FOA (Fronto Orbital Advancement) which is where they remove the whole frontal part of her skull (from ear to ear) to reshape & reposition. They will round out the pointed corners of her skull & remove the fused part in the front which creates that triangular pointed shape on her forehead. They will replace the missing part of the skull with a graph that will allow room for the brain to grow normally. They attach the graph and her skull using dissolvable bolts/screws so there’s no need for another surgery after. The only time they would need to do another surgery after is if the skull doesn’t grow like its supposed to after a year or two. Since Aspyn is doing the open FOA & not the endoscopic surgery she will not need to wear a helmet after (at least that’s the goal). The surgery can be anywhere from 3-6 hours long. I feel confident about the doctor we have for many reasons. Not only has she been specializing in these cases for years but she has successfully separate conjoined twins. Here is a link if you want to read more about that.

With her surgery coming up so quickly I’ve been trying to remain strong and positive about all this for my babygirl. Like with all surgeries there are extreme risks & I’m doing my best to not let my anxiety ridden thoughts completely take over. Please pray, send good vibes or positive thoughts/energy to Aspyn and our family while we go through this rough transition. I absolutely cannot wait to come out the other side (that’s what they call being done with surgery in my Craniosynostosis support group) and have Aspyn on the road to recovery.

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s