4 answers

Craniosynostosis- Ped. Concern About 6 Month-old 'Conehead'

It looks like our 6 month old has a lump on the top of her head, identical to the one her father has. Our pediatrician is concerned that the suture going back from the frontal fontanelle has already fused (craniosynostosis). As her brain grows this could result in a conehead shape to her skull. He has referred us to a neurosurgeon to examine, scan and possibly recommend surgery. (We go for a consultation next week and I am totally freaked by the possibility of this major surgery). My husband and I thought the 'lump' would just be considered genetics, although when he was 6 months the doctors were concerned about his skull growth too, but a second opinion said no problem. (this was 37 years ago...) Have anyone out there had any experience with this????

What can I do next?

So What Happened?™

I want to thank those you who responded so thoughtfully to my post. Your sound and reassuring words like 'see what the neurosurgeon has to say then go from there' were so comforting that I was much less stressed once I made the appointment. My husband, daughter and I saw a fantastic doctor in NYC who took one look at my husband's small head and said there are no coincidences (in this matter). He measured both our heads and said there was no concern about our daughter, no reason for any scans and no need for follow-up. Thank you so much for your support.

More Answers

Hi S.
Second opinions are necessary. Second opinions with experts are a positive thing. Friends had to simply use a helmet. Baby is fine today.
My main reason for writing is to say I will be in prayer for your amazing daughter, but I can put your daughter on our church prayer chain if we have permission and at least a first name. And of course if you keep us updated to what is happening. I will pray anyway.
God is Good
Bless you as you walk through this medical situation.
K. SAHM married 38 years--- adult children 37 needing prayer but a coach by profession, 32 lawyer with our first grandbaby, and twins 18 after homeschooling they are now in college in different places doing different things.

S.,
See what the neurosurgeon has to say then go from there. As a nursing student and a mother of 5, my last child had a similar problem only with his occipital and didn't have surgery. The catch here is while it is noticeable when his hair is short it really doesn't case any pressure on the brain or spinal cord. I waited until we saw the doctors and then went from there. Lucky for him his hair is curly so when it is longer you don't see the bone protruding, but come summer when I cut his hair really short it is noticeable. He is 10 years old today, the kids used to make comments but not anymore, I think the school handled it quite well. Hope this helps.
Hugs,
T.

Hi S.. Your post caught my eye. While I don't have a child with craniosynostosis I do have a child that was born with a cleft lip and palate. Your ped. seems to be on the right track to get you in to have it checked out. I am on the Action Team for AmeriFace - a national craniofacial organization. Check out their website for more information. www.ameriface.org

Also Jorge Posado (NY Yankees baseball player) has a son and a foundation dedicated to craniosynostosis - check that out.. http://www.jorgeposada.com/foundation/

If I can be of any help - please don't hesitate to contact me. There is a good chance I could get in you in touch with a local family that lives in your area. My email is: ____@____.com

Hope the appointment goes well. Good luck!

Hello S.,

I believe that you need not worry about your daughter, but follow through with the consultation with the neurosurgeon. My own daughter was suspected of the same thing. She was born with hydrocephalus and already had a more misshapen head, and her neurologist alarmed us with the prospect that she would need this additional surgery to correct the fused suture. Thankfully, a CAT scan showed the neurosurgeon clearly that the suture was not fused and even his basic examination of her head confirmed that she didn't have craniosynostosis. The surgeon has made an excellent clarification to us a couple of times. Where as a skull may have a certain shape and therefore a specific description for that shape, it doesn't mean that the cause of that shape is what another doctor (like your ped,) suspects is the cause. In other words, there may be a scientific term that describes the shape of your daughter's skull right now, but it doesn't necessarily mean there is a problem to correct. She may have just inherited her father's head! But do go through with the consult and any tests just for your complete peace of mind. And don't be intimidated by having a test done. We have had to go through that a few times with our daughter and you just learn as you go.

Good luck and feel free to contact me if you have any more questions come up!
E.

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