Thursday, February 23, 2012

Craniosynostosis

Just minutes after Savannah's birth the doctors diagnosed her with metopic craniosynostosis (also known as trigonocephaly), a congenital defect that causes the front (metopic) suture of her skull to fuse early (in her case, while she was still in the womb). They don't really know why this happens; although it happens slightly more often with twins, so one theory is that because there is restricted space in utero the skull thinks it's done growing and fuses. 

When the metopic suture fuses early you get a ridge running down the center of the head to the top of the nose and a triangular-shaped forehead (from a top-down view).  This also results in a pinching of the temples and eyes that are too close together. 
Savannah top-down
The premature fusing of the suture also results in increased pressure on the brain that can impact the child's development if not corrected.  
You can see her ridge, compared to Lily
So, on Monday (Feb. 27), Savannah is going to undergo a "cranial vault remodeling" at the Children's Hospital downtown.  It involves (without going into too much detail) removing and reshaping the upper-front half of the skull, as well as cutting, breaking, reshaping the brows/temples.  It's a 4 or 5 hour surgery, with a 4-5 day hospital stay.  After all of the swelling goes down she'll be fitted for an awesome helmet that she'll have to wear for about 8 weeks. 
Beginning of Surgery
End of Surgery
Although this is a really big deal and it breaks my heart that my sweet little girl will have to go through all of this, we do have exceptional surgeons and medical teams and we feel peaceful that this is the right thing to do for her.  We've known it was coming since she was born and I'm honestly looking forward to it being over and done. 
We'll keep everyone updated after the surgery and as she recovers.  I've seen pictures and connected with a few cranio-moms and I know that the first week post-surgery is not pretty--the swelling will probably be so bad that her eyes will swell shut--but I've been told that these babies are very resilient and bounce back incredibly quickly. 

We sure would appreciate any and all thoughts and prayers you can send our way!  We have faith that Heavenly Father will be very involved in this process and that He loves our sweet Savannah.  We're so thankful to have so much support from great family and friends!
Such cute little kiddos...  :)

PS If anybody has any good helmet design ideas, I'd be interested in hearing them!

4 comments:

Jenn said...

We will absolutely be praying for you, and I'm so glad we have the amazing technology we do to treat stuff like this. Let us know if we can help in any way!

Katherine Lewis said...

Man, those little girls are darling! I love all the drool. We will be praying and fasting this week. I'm so sorry that you all have to go through this--I really can't imagine how this must break your heart--but I am so glad that you have found good doctors and feel confident in their abilities. These babies are resilient and I'm sure she will bounce right back, without skipping a beat. We love you guys!

Unknown said...

Hi. n Sorry for barging in on your blog! My daughter is 6 months and got the exact same craniosynostosis as Savannah. Her opperation is the 12 May 2014. Can I please speak to you about questions ive got? my email is wheeler.carine@gmail.com
thank you in advance!

Unknown said...

Hi, i hope everything went well, i found this blog as my little boy has the same craniosynostosis. Doctors say that he don't need operation, but me and my wife are worried if no operation is done will he be ok with the growth of the brain, and if he has operation how life threatening is the operation. If you can please contact me on vlatkopetrush@gmail.com.