Craniosynostosis Support

Saturday, February 4, 2012
I've noticed that lately some of my blog traffic seems to be people searching for information regarding craniosynostosis. So if you are a parent of a child diagnosed with craniosynostosis, welcome!

I'm going to try to put together a link of all the posts I've written regarding our experiences with craniosynostosis. For those that don't know, both of our daughters have/had craniosynostosis, which is the premature fusion of the skull sutures. One daughter had sagittal and the other had unilateral coronal. Fortunately, both of our daughters were diagnosed when they were only several weeks old and therefore qualified for the endoscopic version of the surgery. Both have had to wear helmets following the surgery (one is still in her helmet). But other than the cranio, both of our children are healthy and thriving. We are lucky.

I've also noticed some of those searches are specifically seeking information regarding nerve damage associated with or caused by craniosynostosis. I can't speak to this directly as neither of our children have suffered from nerve damage. However, I do know that some doctors cite nerve damage as a potential deterrent from having the endoscopic craniectomy (the name of the surgery to remove the strip of fused bone) rather than the traditional CVR (cranial vault reconstruction- when the entire skull plate is removed and sculpted and then placed back into the skull).

The endoscopic version of the surgery is a relatively new procedure and perhaps some doctors are wary or simply unaware or unable to perform it. I have read about some doctors encouraging parents against the endoscopic surgery, and instead encouraging them to wait to have the full CVR when the baby is slightly older. I am not a doctor, but unless your child is sickly, I think this suggestion is hogwash. If your doctor is advocating for this, I would strongly suggest getting a second opinion.

Obviously, the endoscopic surgery does require immense skill to perform and not every neurosurgeon is trained to do this procedure. In fact, there are only so many doctors throughout the country who are experts in this surgery. We are fortunate to live in an area where there are several doctors who can perform this surgery.

Both my husband and I are huge advocates of the endoscopic surgery. The endoscopic surgery is much less invasive, which means a smaller likelihood of complications and much less time spent in the hospital (one night as opposed to six or seven). Furthermore, the research is beginning to show that the children who have had the endoscopic surgery are faring better long term than those who had the traditional surgery.

So if you are fortunate enough to have your child diagnosed early enough (the endoscopic surgery is usually done prior to 12 weeks of age) that both types of surgeries are an option, I would strongly encourage you to go with the endoscopic surgery. Yes, it is scary, very scary, to have your infant undergo major surgery, but in the long run (and in the short run too), it will be worth it. And then the surgery will be over and it won't be something looming in the future to dread.

If you have any questions at all regarding craniosynostosis or the surgeries or what to expect, please feel free to email me. I know how nerve racking it can be to hear that diagnosis of craniosynostosis, but it will be okay. All will be well.

I think these are listed somewhere else on my blog, but again, here are some organizations that offer support to cranio families. They are wonderful.

Cranio Care Bears ~ they send care packages to families undergoing surgery for craniosynostosis. They're awesome.

Cranio Angel Network ~ they send handmade flower headbands and pirate do-rags for kids who have undergone cranio surgeries. Also awesome.

Cranio Kids ~ Forum and stories for families with cranio. Lots of support here.

Jorge Posada Foundation ~ Offer a mentoring program and information regarding craniosynostosis.

Hope this information helps! And please, if you have any questions, please do not hesitate to email me! God bless!

2 comments:

  1. This is so cool that people may read about your experience and gain knowledge, and be comforted....and see the cute pics of your kids with and without their helmets.

    Yes, you should create an easy link in your sidebar with many of your relevant posts.

    :)

    ReplyDelete
  2. Thanks, Kerry! I hope at least, a few people are comforted by it. I know how scary it can be.

    Now I just have to figure out how to create the link...

    ReplyDelete

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