Craniosynostosis

Tommy's over one month out of surgery and recovering beautifully, so I thought I'd do a quick post on his condition.  I'm a pretty calm person - and I try especially to be calm when medical issues are involved.  But, while I was trying to research doctors and surgery options when this all started, all I could find online caused me fear rather than offering me peace of mind.  So I'm throwing this out there - it might not be interesting to all of you - but maybe someone will come across it one day and it will calm them down instead of scaring them further.

Craniosynostosis is the early closing of one or more sutures in the head (sometimes the absence of a soft spot or a very small one) and causes an abnormal head shape.  There are lots of different varieties of it that result in lots of different head shapes - some are genetic and associated with syndromes, others are just flukes that aren't explainable.  The verdict is still out on whether the condition puts pressure on the brain and can affect brain growth, and there's really no good suggestion for what causes it.  There are a couple of surgery options but the most common one requires skull reconstruction.

We were well aware of Craniosynostosis - Mr. B had a (non-genetic, non-sydnromic) form of it when he was born and had surgery when he was 3 1/2 months old.  I'd done my research on the condition while I was pregant just in case - I knew that B's form wasn't genetic and that there was a very high (some say too high) diagnosis and surgery rate in the late 1970s and early 1980s - especially in Colorado.

When Thomas was born he had a hard ridge and a bump at the back of his head, but no one seemed too concerned - thought that it could have been a result of his position in utero.  When Tommy was about three weeks old I noticed that his forehead was starting to protrude, so I mentioned Tommy's ridge to his pediatrician at his 1 month appointment and she referred us to a Pediatric Neurosurgeon.

That's when I started to do more extensive research and came across blogs and websites that were too dramatic for my taste - parents diagnosing other parents' children based on photos, long drawn out surgery stories, discussions about whether or not a parent should let their kid play a sport when they'd had this surgery five years before.  I stopped researching right then and there because it wasn't helping me remain calm and we chose not to discuss the situation with others - actually a suggestion from our pediatrician - until we had an opinion from an expert.  We met with pediatric neurosurgeons at both of the children's hospital options in Denver who both immediately confirmed that Thomas had a sagittal stynosis.  And the were very curious about Mr. B - especially since they confirmed that Thomas's stynosis was not genetic. 

Both surgeons told us the surgery was technically cosmetic because there is no concrete evidence that restricted skull growth causes pressure on the brain.  Which of course made us wonder if we should put Tommy through surgery.  Both surgeons said they 100% recommended Tommy have surgery - because of the unknown and because of social issues as he got older, and after a little time discussing it, B and I agreed.  We trusted both hospitals and surgeons so we chose the one who made us feel the most comfortable, scheduled the surgery, and waited.

This is the best picture I have that shows how Thomas's forehead was affected by the fusion [at his Baptism the weekend before his surgery]. 

And here's a picture of Mr. Thomas's head the day before surgery from above - more oblong than round.

B and I were both pretty calm - it was so reassuring to know that Mr. B had made it through the surgery eons ago.  Medical advances have come along way since Mr. B was a 3 month old.

That's not to say I didn't have my moments: We moved Tommy's baptism up a few weeks because it was really important to me that he be baptized before surgery.  I was a wreck that day - because his baptism wasn't the community event that it would have been a few weeks later and because it was the one concrete thing that we had to change because of his surgery and made the coming week so much more real.

But, in the end, we could not be more thrilled with the treatment Tommy received.  His surgeon was wonderful - technically skilled - our doctor and medical friends were all astounded by the fact that a plastic surgeon didn't do the closing - but more importantly she was empathetic, honest, and very calm.  She told us over and over again that our job as parents - waiting during the surgery - was so much harder than what she had to do.  Because she was calm and didn't sensationalize things, we were calm.  And his care in the hospital and quick recovery amazed us.

Here's Tommy two days post-surgery.  His head was already much more round.

And 5 days post-op (it drove me crazy that I couldn't scrub the betadine off his head):

Two weeks post-op (during a temper tantrum while taking his 3 month pictures):

And now, he's as good as new - happy and healthy with a round head and flat forehead.  His last stitch fell out about two weeks ago, and his scar is a faint wavy line across his head.  We hope someday he'll have hair to cover it, but if not his dad can teach him how to make up cool stories at bars in college when people ask about it. 

And that's that.  We made it through his surgery successfully, Tommy is perfectly healthy and we quickly moved onto bigger and better things - like rolling over, drooling, and dressing like a frat boy.  We are so thankful for the wonderful care Thomas received, for the skilled doctors who helped us remain calm, and for all of our real life and virutal friends who prayed for us, delivered meals when we got home (and diet cokes and M&Ms to the hospital), and for our beautiful baby boy's resilience and overall health.