Craniosynostosis Awareness

Wednesday, August 10, 2011
For anyone who's interested I found this great You Tube video of Abby's surgery. It's only 30 seconds long.

I've said it before, but we are so lucky that Abby will be able to have her surgery endoscopically. From what I've read, many of the kids that have craniosynostosis don't have their cranio diagnosed until they're past the point of being eligible for the endoscopic version of the surgery and are therefore forced to have the traditional version.

Doctors prefer to do the endoscopic version of the surgery before the child is 4 months old, so early diagnosis is crucial. Children who undergo the traditional version of the surgery sometimes have to undergo multiple surgeries, so again, early diagnosis is of the utmost importance. Therefore it's important to promote awareness of this condition. After we get through Abby's surgery and recovery, I really want to start working with charities and foundations to get craniosynostosis awareness out there, especially among pediatricians so that they're able to make that early diagnosis. We are so lucky that we have such a phenomenal pediatrician who was able to catch Hannah's and Abby's cranio early. Many families have to keep pushing their pediatrician to even get a diagnosis.

There are numerous Craniosynostosis awareness campaigns and charities (I was not aware of this with Hannah) out there that are doing such good to educate people about this condition. For anyone who feels compelled to do something for us, we would kindly encourage you to donate to one of these fine charities.

One charity we have benefited from is the Cranio Angel Network. This Cranio Mom creates headbands and do-rags for kids undergoing cranio surgeries. See Abby wearing one below, so cute! The headbands are intended to cover the scars from the surgery. Fortunately for our daughters, their scars are/will be minimal, but for some kids, the scars cover their entire head. She creates these headbands and do-rags free of charge for cranio families. Abby received hers earlier this week. The Cranio Angel Network is also working incredibly hard to increase awareness about craniosynostosis. There is a fundraising walk that will be held at Sea World in San Diego this October. All the proceeds will go to helping cranio families and to promoting awareness. We plan to be "virtual walkers" when the time comes.

Another wonderful charity is the Cranio Care Bears. This Mom sends care packages to families whose children are undergoing craniosynostosis surgery. We received our care package yesterday and oh my goodness, everything in it is so thoughtful. She sent a blanket for Abby, gum, candies, socks, toys, a frame with Abby's name on it, and so many other little knick-knacks that we'll need for the hospital stay. We were so incredibly touched by this care package. What a generous heart this woman has. Again, we received this package free of charge.

I've also discovered the Jorge Posada Foundation. Jorge Posada is the starting catcher for the Yankees. His son was diagnosed with craniosynostis, but not until he was a little older and as a result has had to undergo seven surgeries. (Again, this is why early diagnosis is crucial.)The Foundation hosts a glitzy fundraiser in Manhattan every year to benefit awareness and to help families pay for surgeries. Hopefully in a year or two we'll be able to attend the fundraiser (and maybe meet Derek Jeter-rumor has it he attends).

The Jorge Posada Foundation also sponsors a mentoring program, which connects families undergoing the surgery with families that have already been through the process. We plan on becoming mentors after we get through Abby's surgery and recovery.

As you can see, there are a lot more foundations and charities trying to get the word out about craniosynostosis than I initially realized. Just knowing that other people have been through this makes a world of difference. Craniosysnostis effects 1 in 2,000 children, so statistically, it's not that uncommon. Once Abby is on the other side of this surgery I really want to get involved in promoting awareness for this condition.


  1. The day before you put up the first post about Abby needing surgery, I was reading about Jorge Posada on wikipedia and noticed the blurb about his foundation and his son. That's the first time I'd ever heard of craniosynostis. What a coincidence!

  2. Oh how funny, what a weird coincidence!


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