Needing some support here from Mamas who have gone through a procedure for a birth defect called: Crainosynotosis- a premature fusion of the plates in the skull that inhibit brain growth and need to be surgically separated. I have a 8 month old girl and we are going for our CT scan next week. I fear the worse, since my doctor is suggesting the scan, there is reason enough to believe she may need this surgery. Has anyone gone through this? The statistics say 1 in every 2000 babies have this, but I have yet to meet any other families. Please let me know, I could really use the advice of those who went through it and how they handled it. Thank you, A.
Thank you all for your wonderful advice and concern, I really took it to heart and it helped calm me as we went through the process. The good news is, the CT scan came back and there is no fusion of the skull so we can get by with just the helmet therapy and that is a GOOD thing (though I am nervous now about the helmet, but it will be ok). We get the helmet on Wed. and go from there. We liked cranial kids in Fort Lauderdale. Peace all, A.
Dear A.,
When my son was born, his pediatrician feared that he had craniosynostosis. He had to be sedated for the CT scan, and it was a really scary time for our family. It turns out that the plates were not fused, and I hope you get the same results next week. I do remember being told that as scary as the procedure sounds, it does have a fantastic success rate. Hang in there. I'll be thinking of you.
Sincerely,
L.
I haven't experienced that particular type of surgery, though my oldest required surgery at the age of two. Usually the doctors wait until the child reaches a certain weight, so to withstand the anestesia (sp?) Anyway, stay calm and know that you are in my prayers.
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Hi Sweetheart, the CT is painless, takes about three minutes, longer than most 8 month olds can stay still; but the tech will know how to handle it. The surgery I have gone through with my 2 year old son was for a "hypospadius". No matter what procedure, it is an emotional event to see your baby taken away into the operating room. I hope you are confident and comfortable with your surgeon and his/her staff. Most surgery is done after the baby reaches a certain weight to handle the anesthesia. But know that if your baby does need it, it must be dealt with. I hope your husband and family are supportive. All us moms are praying for you...
Dear A.,
I know what you are going through - we went through it when my son was 9 months old. Fortunately, his CT scan came back saying that although he did (does) have positional plagiocephaly - he didn't have crainosynotosis.
I did a lot of research though. We found that the best place for the crainosynotosis surgery is Johns Hopkins Medical Center in Baltimore. You can find their contact info online if you get a diagnosis. When we went through this in 2006, we found a really great neurosurgeon at Joe DiMaggio - just contact that department there. He was super helpful, explained everything, was very gentle and gave me lots of opportunities to ask questions.
I really hated Dr. Stelnicki at Miami Children's Hospital - no bedside manner and treated us like trash. I don't recommend him at all.
Good luck to you! Oh, there is some kind of a crainosynotosis support group on line also, but I don't remember where now.
C.
I just found out my son needed surgery. It is very heartbreaking. He was diagnosed with Craniosynotosis about almost a month ago now. His consultation visit is on March 24th, 2010. So I know how hard this is for you. My son will be getting surgery very soon and my husband and I are scared to death. I cant tell you not to worry and how to handle this because I am having a really hard time to.
HI, I am in Davie and have actually had two babies come through my classes who had that surgery in the past years. They ended up being normal developing and their heads and brains grew fine after their surgeries. Get her on her tummy as much as possible to increase her strength before the surgery because she will be on her back for awhile and she will be at risk of developmental delay. Let her be on the floor, on belly with her toys and sister. I am wondering if she is crawling or close to crawling yet. If not make sure she stays down most of the time she is awake. She can practice her skills, work out primitive reflexes, rock on hands and knees, roll, turn over and go to a sit from laying. Good luck with the surgery. The worst part, for the time being, is the scar but eventually the hair covers it. I don't know where you have been but Stelnicki at Memoral East is the go to guy.
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I actually know two babies years ago who had that surgery. They both grew up fine and developed normally. Make sure your baby is crawling or starting to crawl to activate the brain and get it ready for school. If the left and right hemispheres are hooked up and your baby has strength to recover from being on her back for awhile while being in the hospital, she will recover and go back to the business of being a developing baby. Give her lots of tummy time now or put her in situations that require her to use upper body like pulling up her legs and making her balance on her hands using shoulders. The surgery should be fine and the scar fades over time and hair covers it. Good luck!
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I just read your update about the helmet. Put her in occupational therpay at the same time so she gets good vestibular activation and stimulation for her sense of balance. Those helmets screw up the whole sense because they have limited movement at a time when they should be having intense movement. OT helps so much by providing the input that she will need to develop a sense of time and space, attention, staying still and focus. It's all inside the inner ear. That fluid needs to move and move. Good luck!
