My 9 month old daughter has a slight ridge on her frontal bone. She had an xray and we were told her front suture is closed and we have been referred to a neurosurgeon to review our options. Just wondering if anyone else has had this with their child and what your options and outcomes were. She's a normally developing child and cosmetically her head shape looks fine.
hi -
I don't have any experience in this but here is some additional information:
http://www.cincinnatichildrens.org/health/info/craniofaci...
good luck!!
Hello,
We went through this when my son was 7 months old.. (he is now 7). My pediatrician noticed a ridge on his forehead and was referred to Dr. Hobar at Children's. He was FANTASTIC. Dr. Hobar determined that his front suture had closed early and that he needed surgery. There were no other options for us. The Dr. told me that there is a 30-50% chance of future brain damage, because when the soft spot closed if can restrict future brain growth. He stated it needed to stay open until 18 months. If it was just cosmetic we would have thought twice about the surgery. My son was normal functioning.. although we did notice the ridge after it was pointed out. We now look at before and after pictures and notice a big difference.
When I walked in Dr. Hobar's office, the kids had severe issues, so I thought, my kid is fine. So, when they said he needed surgery our world was turned upside down. Please please please... if the neurosurgeon and your family determine to go through with the surgery do NOT look at pictures online!! The kids looked like Frakenstein. They had shaved heads and terrible incision scars. I scared myself so badly. They just shaved my son's head where the the incision was going to be and they did it zig-zag, so now his hair grows over it, and you can only notice it when he gets a really short hair cut.
My son had the surgery at 11 months.. the earlier the better because it is much easier on the kids when their skull is still developing and soft. I couldn't get into Dr. Hobar for several months. The surgery lasted about 4 hrs due to having to remove and reshape the forehead. He was in the hospital 5 days. When he got out of surgery, he looked great.. I am saying this because I looked at before and after pics online that were so bad. It looked as if he just had stitches shaped like a headband. The very hard part was after several days his eyes were swollen shut due to the pressure. They were like this for 3 days or so. As long as he could feel us and we were holding him he was perfectly fine. On the way home I was so worried he wouldn't sit in his carseat, but he felt it and just started smiling really big knowing he was going home.
My son had to go back in one month.. then 6 months.. then once a year for 3 yrs, and now I am about to take him after a 3 year break for a checkup.
There was a group of Drs that did the surgery. Dr. Hobar is a Plastic Surgeon at a different office and provides services on Wednesdays to Childrens.. the other Dr. was Dr. Sklar. There is one more but I forgot his name. They were all wonderful.
Since my son had the surgery over 6 yrs ago, maybe they have new advances where invasive surgery isn't necessary. This time was so scary for us, but we are so glad we followed the Dr's advice because the fear of brain damage, and seeing adults and older children that obviously had the same issue but never had surgery.
Let me know if you have any additional questions!
Best of luck to you!
Hi! First let me say I am so sorry you are having to deal with this. And second let me say, you can totally get through it and you daughter will be fine! At 10 weeks old my daughter was diagnosed with Plagiocephaly and Torticollis. But for a little while we thought she might have Craniosynostosis so I did a lot of research. The best advice I could give you, seeing as how I didn't actually deal with what you are dealing with, is to get on a good chat room/web support group type thing. I joined a Plagio group on babycenter.com and posted my questions there. The other parents were awesomely supportive and honestly way more knowledgeable about certain things than my pediatrician.
My second bit of advice is that if your daughter ends up having to wear a corrective helmet (sometimes cranio kids have to if that have surgery) then go with the Doc Band instead of the Star Band. There is a Doc clinic in Dallas that is where we went. Anyway, I know that's a ways off. Hang in there mama! The important thing is that developmentally you daughter is fine. Good luck!
I know someone who recently went through this, and she has started a blog about it all.
davidscabesa.blogspot.com
Her doctor is the one that invented the method that is much less invasive than the traditional surgery.
Check it out.
