1 Year Old Whose Soft Spot Closed Too Early!

Yes! We went through this with our daughter who is now 7 1/2 years old & in 1st grade.

At her 6 month check-up her cranial plates had fully fused - as in had not grown AT ALL since her 4 month check-up. The condition is called Craniosynistosis (my spelling may be a bit off).

The first thing the doc told me when I asked her to write down the name of the possible condition was to NOT go on the Internet, look at all the pictures and freak out! She said that the pics would be of the worst cases...NOT what might be going on with my daughter.

We did have to send her in for a CT Scan - it was probably one of the most difficult parenting days of my life, watching my tiny little girl through the window...but trust me, it was much harder on me than on her - so I feel your fear completely!!!

We had to wait a couple of weeks to get in for the CT scan and THEN we had to wait for the pediatrician to get the results and THEN we had to wait to see the Neurosurgeon - thankfully we were living in Baltimore and were with a Johns Hopkins practice - our pediatrician had done part of her residency with Ben Carson - the neurosurgeon who separated the conjoined twins...so we KNEW we were in extremely good hands!

All of that said, we went in to see him, he looked at the CT scan, looked at our tiny little girl (she was about 7 months at this point), looked at me and said, "I think there's about a 90% chance she has a small head...you have a small head (meaning me) so it stands to reason she does too." He wanted to see us back in 6 months to make sure.

6 months later, the pediatrician told us everything was progressing well and did not see any reason to return for follow-up with Dr. Carson.

My daughter is healthy, happy, gorgeous and her head is completely normal - she is petite in general so it all fits.

During this ordeal, my husband was beside himself, feeling that the doc had driven me crazy by giving me the worst case scenario - I'm a worst case scenario kind of girl...tell me the worst thing it could be, I'll mentally prepare for that and anything other than that is better than the worst, right? He's a "deal with it when it's a reality" kind of guy.

So...from what our doc told me...the worst case scenario for our daughter was this...neurosurgery. They separate the cranial plates, place what is akin to little lego pieces in between the plates to give the head some space and allow for proper growth, close everything back up, the hair grows back and everything moves forward according to plan. Scary, yes...but for me, as terrified as I was, this simple explanation made it manageable.

Was I thankful it didn't come to that? of course! but it is apparently a lot more common than I realized - one of those things that when I was ready to curl up in a ball and sob for days, the few people I told shared stories with me about children, friends, neighbors, nieces, nephews, etc. who had gone through exactly the same thing and came out just fine.

I hope this helps. It is very very scary - the waiting is the worst - but what I did learn is that with this, the docs ALWAYS err on the side of caution and the # of cases that require any intervention beyond the CT scan is VERY VERY small! This is one of those things that the docs have to kind of be alarmists about - better safe than sorry, but it is extremely rare that it amounts to anything.

Please feel free to contact me directly if I can be of any further help. Good luck!!!

I am an adult who had the same problem, and I had surgery for it when I was two. The condition I have is genetic, so I have a good chance of passing it on to my kids (and I haven't passed it on to my daughter). So before getting pregnant I did some research as to how it's dealt with today, compared to 30-some years ago. I turned out just fine, but let me tell you that the surgeries they do now are much more sophisticated and kinder to kids than they were when I had it done to me. That being said, I also think it's a good sign that they're just now noticing the sutures fusing at 12 months -- many babies have fused sutures much earlier, and have surgeries as early as 4 months of age. So I know it's hard, but hang in there, be strong for your daughter, and be optimistic that they're just covering their bases to make sure everything is fine. Ask lots of questions, too, to make sure you're informed.

If it turns out that your daughter does have craniosynostosis (which basically means premature fusion of the soft spot), then let me know -- I know of a fantastic online support group I can refer you to, the families there are wonderful and can give you lots of support. But don't worry about this just yet, for now just see what happens and take it one step at a time.

My old neighbor's son, who also happened to be a twin, had this surgery and although it was scary, he is in 1st grade and doing fine.

And, hey, we have similar family situations- I have three boys, though, a 7 year old and twin 4 1/2 year olds. So we both had twins when our first was 2 1/2! It's crazy, isn't it? Now, I've got a few years on you, but it's still wild around here!

First I will pray that there is nothing wrong. It is such a good sign already if she has been developing normally so far. If there is a problem there is just so much they can do to fix it. I know it makes you sick to think of anything being wrong with your child but I have a really good feeling that your daughter is going to be O.K.

Hang in there. I know how horribly awful it is to wait to hear from doctors and test results etc.

Also, if the doctors saw something really disturbing in the x-rays I believe they would have immediately sent your daughter to a neurosurgeon at a children's hospital instead of telling you to follow-up with her pediatrician on Monday.

Please keep us posted. I really feel your pain.

Jeannie

I'm not sure about this personally but 12 months is in the normal range for the 'soft spot' to close. When I took my son for a 18 month check up they said it would be a little abnormal for it not to close and the range was 12-18 months (although read it could be as high as 2).

I would say try to remain calm as best as you can and wait for the pediatrician to talk to you. It may be that they are just trying to cover all the bases and nothing is wrong. Especially, if all has been normal up to now and the head growth has been normal all along. They are probably just trying to determine if the skull and brain growth are in-step with each other.

I wish you the best of luck and Monday will be here soon enough. Try to keep busy today!

R.,

My son had the same problem when he was 9 months old. He has surgery for Crainostenosis ( I may have spelled it wrong). It is fixable. My son is now 4 years old with no effects from having the surgery. We saw Dr. Whitaker at Children's Hospital of Philadelphia. He was wonderful. Listen to the pediatrician. They can point you in the right direction. I know it seems like it takes forever to get something done when there is a problem with your child. We felt the same way. It will be ok.

I have no advice, but I just wanted to say that my thoughts and prayers are with you and your little one!

My second child's skull bones fused at 3 months old completely- the pediatrician could not even feel the suture lines between the bones, not just the soft spot. The neurosurgeon had never seen a case that early, but he said it was not completely uncommon at 6-9 months. They also told me that it is not usually a problem if the head is developing normally. I was told that if there was a severe problem the head would be mis-shapen, which his was not.
I hope all the best for you, and that all goes well