Here is something I wasn't AWARE of until just a few days ago . . .
September is Craniosynostosis Awareness Month!
In just a few days, Rachel will be 10 months out from surgery. I am thankful EVERY day that our surgery is behind us, but I've still been wondering how I can help someone else going through this. Believe me, it really stinks when your doctor tells you your baby has something he hasn't seen in 18 years of practicing medicine. Thankfully, miraculously, three people I know had friends or family with experience with it. I am thankful for all of them, and others, for sharing their experiences with us as we traveled on our journey.
Cranio parents and babies have one huge thing on their side. The condition is not life threatening, and the surgery carries risks of way below 1%. (Remember me clinging to that promise from our Dr. last summer?)
But, that also is a difficult part. The risks, however small, are very, very real when you are talking about your smiling baby on your lap. And the only way out is a 6+ hour long surgery (or a less-invasive surgery with a helmet for a year if it is caught early enough and parents desire that route.)
About 1 in 4,000-5,000 babies is born with craniosynostosis. Some are diagnosed at birth and some are a few or more months old, like Rachel was. One or more sutures may close early. About 80% of craniosynostosis cases are not considered genetic. (We enrolled Rachel in a study to see if she can help her doctors figure this out.)
The same night I learned about Cranio Awareness Month, I found this amazing organization:
The group was founded by two moms of cranio babies. They send care packages and support all over the world to parents and babies undergoing surgery, 50-60 packages a month! They accept monetary donations, of course, but also items that they could include in a package, including baby care, socks, hats, toiletries, snacks for parents, etc. They are based out of Washington state--their address for donations is on their website.
Their Facebook page is FILLED with love and prayers for these babies and their parents, those waiting for surgery, recovering, or celebrating their "cranioversaries"!
I am so excited about this cause.
I just wish I knew how to knit hats and booties.
Our family faced craniosynostosis, and thankfully as most can, Rachel and we can move past it with nothing more than a scar.
Now it's time for us to help someone through it, to tell them what I so desperately needed to hear last summer,
"She'll be fine."
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