13 answers

Soft Spot Closing Too Early

yesterday at my baby's 4 month old well baby check up, the doctor said she didn't have a soft spot, it had grown together already. She said we have to get an xray today and go see a pediatric neuro-surgeon to discuss surgery options. I am really upset by this and was wondering if any of you moms have had to deal with with your kiddos. What should I expect at our appointment with the surgeon?

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So What Happened?™

This morning we took Juliana to see the neurosurgeon and he said that although her soft spot is starting to close, it hasn't fused yet and there is a small soft spot. He thinks she will not need any surgery! YEAAAA!! We have to go back in three months to be sure. Thank you guys so much for your responses and support during the last three weeks. It really meant a lot to me! A.

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I have 5 kids and they all pretty much had it closed by about that time. Are there other things going on with the baby? Any mile stones not being met? Was she early? All these need to be taken into consideration. Good Luck
J. O

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This exact thing happened to me with my son when he was a baby. The doctor drew with his pen on the examining table paper a circle the size of a quarter or more,that the soft spot should have been and then drew intersecting lines within that circle. Where the crossed lines intersected, he made a tiny circle,the size of a tiny pea and said that was the size of his soft spot!

He scared me to death with worst case scenarios while I stood there sobbing and ordered x-rays.
I brought my smart little baby to the hospital for
x-rays and they came out perfectly normal! Not a thing was wrong with his fontanels. Ian is now 17 years old.
It is good to get things checked out because they can fix this problem, but it seems doctors have often been wrong with their suspicions in many instances too.

1 mom found this helpful

This happened to my husband 37 years ago! Just think of the leaps and bounds in medicine since then. He did go through the surgery and does have a small ridge in his head (but keep in mind this was 37 years ago.) You would never see it or notice it (unless he goes bald someday!) Yes, it must be scary to have to experience this, but please know this is something that has been happening for many many years with much success! And, like some have mentioned (and I have heard through friends), sometimes this is a misdiagnosis...

1 mom found this helpful

My niece had the same situation when she was few months old and surgery had to be performed on her. I'm sorry, don't know the name of the surgery off hand, but they had to turn over some of the frontal bones so they make room for her brain to grow. She is ten years old now, honor student, beautiful, intelligent girl. They had saved her from something terrible. If you'd like more info, happy to follow up. Good luck, all the best. ps. Doctors are amazing nowadays, what they can do is incredible!

1 mom found this helpful

Hi!
Are they sure?? I went thorough a similar situation, but it turned out to be wrong. The ped. thought my son had this since his head was misshapen and sent us for an X-ray. The X-ry showed that it had fused so they sent us to Children's to see a neuro-surgeon. I was a wreck just thinking about it and waiting the weeks for the appt. It turned out to be a fuzzy X-ray and it had not fused. We were very relieved, but upset that we had worried for nothing. So the moral of my story is to try and not worry too much until the tests are done and confirmed. I spent way too much time on the internet trying to find out what would happen, but it was just an overreaction. Good luck!! I hope you can get an appointment soon and get all the info you need.

L.

1 mom found this helpful

It sounds like it could be craniosynostosis. My daughter was misdiagnosed with craniosynostosis at 9 months old. Her head was slightly flat on one side, so our pediatrician sent her for x-rays, which were misread by a resident in radiology at Loyola who determined that 2 of the plates in her head/skull had already fused together, which indicates craniosynostosis. (They shouldn't fuse so early in a baby's development.) When she then developed other symptoms in the next few days, including vomiting and dry heaving with no fever and what appeared to be pain in her head, we were told to take her immediately to the ER, where they prepared her for emergency surgery for craniosynostosis. After she had been sedated for a CAT scan prior to surgery, an ER doctor checked her x-rays one last time (thank God) and discovered that they had been misread and that nothing was wrong with the plates in her head. She is now 5, and her head is perfectly fine.

Another poster, Siobhan, mentioned Dr. Frank Vicari at Children's Memorial. I can't say enough good about him. He operated on my infant son last week and did a terrific job. If your baby girl needs surgery, she will be in good hands with him. He has impeccable credentials and is just the nicest person as well.

1 mom found this helpful

I have 5 kids and they all pretty much had it closed by about that time. Are there other things going on with the baby? Any mile stones not being met? Was she early? All these need to be taken into consideration. Good Luck
J. O

Our son didn't have the soft spot problem, but he did have torticollis and plagiocephaly. We too saw Dr. Frank Vicari at Children's Memorial Hospital and he was awesome. Our son ended up needing physical therapy to help the torticollis (which is basically a shortened muscle on one side of the neck, which causes the child to only look in one direction, making that side of the head flat and the head non-symmetrical). So he ended up wearing a helmet for 9 months (2 helmets actually), starting at 9 months old and ending at 18 months old. At first I was freaked out but there are lots of websites out there for parents with kids with these conditions, and I also found a few YahooGroups which were wonderful - parents all over the country with the same concerns and with great ideas for how to get through this time. Definitely join a few of those - You can freely post your concerns and hear back from other parents in the same boat or who have been through this.

If you do end up having to have the surgery and doing the helmet, just know that in a year or two all will be well. I know it is scary! Our son now has an almost perfectly symmetrical head and he is just fine, thriving. I highly recommend Dr. Vicari and his staff, too - - They know what they are doing and you will be in good hands.

Hello and thank you for sharing your story! My son was also diagnosed with craniosynostosis at age 9 weeks after both fontelles closed and his head became oblong rather than round. This was confirmed by a CAT scan, rather than an x-ray. The main suture that runs along the top of his head was closed too soon.

We then saw Dr. Frank Vicari at Children's Memorial Hospital. He is a cranial-facial surgeon who teams with a neurosurgeon (Dr. Robin Bowman, for us) and they did an endoscopic craniectomy when my son was 15 weeks old. When the sutures of the skull close too early, there is no room for the brain to grow and expand. My son's skull was significantly mishapen by 15 weeks. He wore a helmet following the procedure once he healed (got it about 4 weeks post-op). It was the DOC band that you may have seen around for kids with mishapen skulls, but he also wore it since about 30% of his skull was removed in surgery. If you want to talk or email off-line, let me know. I am happy to support you through this! I definitely needed all the help I could get when we went through it! Good luck.

Hi A.,

My son was diagnosed with metopic craniosynostosis. It is the suture from the top of the nose to where the anterior fontanelle should be. We had X-rays at our local hospital and then were referred onto the U of C to see the neurosurgeon and plastic surgeon.

At the appointment with the surgeon they are going to measure her head, do a neuro exam, and most likely order a CT Scan of her head.

If you want to talk feel free to email me.

HUGS!
M.

The same thing happened to my son. Actually I was the one who noticed it. His head was more oval shaped than round and it was flat on the sides and I could never feel a soft spot (This all occured when he was about 8 months old, but I think it closed a lot sooner than that). His doctor didn't think anything was wrong. He sent me for xrays and then sent me to a neurosurgeon at Lutheran General Hospital. I saw Dr. Ruge (who was great) and right away he could see what I was talking about. My son had to go get a CT scan and sure enough his soft spot was closed. I had to meet with Dr. Vicari as well from Childrens Memorial Hospital for a second opinion. I had to go to another appointment to get his head measured for a helmet just in case he needed it after the surgery (which he didn't thankfully). Both Dr. Vicari and Dr. Ruge performed the surgery at Lutheran General Hospital. I had the best experience there. Originally they were only going to do a small incision, but the morning of surgery they informed me they were going to have to cut from the top middle of his head all the way to the back (it was shaped like a big S). Not to scare you, but the whole experience is frightening and scary. I really do feel for you right now. The last thing you want to see is your baby go thru something like this. If you have any more questions or want to talk about it, feel free to send me a personal message. But just remember, if they do have to do surgery, everything will be ok and in the long run it will be best for your baby. (Acutally, my son has to go back for a 2 year post op check-up, and I'm a little worried about the shape of his head, the back of his head is starting to look like it did before surgery, so I am praying he won't have to go thru that again!)

My son had a CT scan to make sure plates hadn't fused prematurely. It was scary, but as it turned out he didn't need surgery (everything was normal, he just had positional deformity.) It's a good thing that your doctor is aware and concerned. Best wishes to you. From what I read at the time, the outcomes are usually good. And as others have said, Children's Memorial is great if you are able to go there.

I am actually going through this right now and really appreciate finding this post. At my son's 4-month checkup, our family doctor noticed that his soft spot appears to be closed and that the back is slightly flat on one side (probably due to positioning). She mentioned that his head is round and proportional otherwise. She referred us anyway as a precaution. We have an appointment with Dr. Vicari of Children's Memorial in 3 weeks (he will be 5 1/2 months by then). As you can imagine, I am somewhat worried (as any mom would be). Good to hear that Dr. Vicari is a good doctor.

Hi A.,

I can't say anything based on personal experiences but maybe it would be worthwhile checking the scull of your baby with a cranio-sacral therapist/chiropractor who specializes in children's health in addition to the surgical consultation. My three children are under a regular chiropractic care and several issues such as a cross eye, clogged tear duct or an irregular shape of the head have been resolved or relieved through those therapies. Please let me know if you'd like any contact information (our doctor is great with children and is in Oak Park).

Wish best of luck to your baby and your family.

J. K.

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