My nephew is 5months old. I have cared for him in my home every day and sometimes nights and entire weeks since he was 2weeks old. I noticed almost 2 months ago that he no longer had any soft spots on his head. He went in 2 days ago for a check up and shots and his Mother was told he may have craniosynostosis. This is when the soft spot closes to early and brain growth/development is hendered. He doesn't seem to have any symoptoms other than having a somewhat large head. It isn't really mis-shapen but i've read online that the deformity can get worse as he gets older.
His Mother refuses to allow the Doctor to give the baby an MRI or CT Scan. She told me yesterday that she doesn't think the Doctor knows what she is talking about and that her Baby is fine. I worry that she is going to let this go and more symptoms will develope.

I don't think this is something that should be ignored. Have any of you experienced a child soft spot closing early? Should I be so worried?

Oh Im so sorry that you are dealing with this

My daughter who is now 30 was born with that too

2 of her daughters my granddaughters also were born with it.

Yes it is heredity. Please let the mom know it is very important
that the Dr's deal with as fast as they can.

This is not something to take lightly. I envolves the scull
being fused in places where the brain certainly still needs room
to grow.
If gone undone well besides major deformaties there could be
serious repercussions for example: pain, suffering or even
mental retardation. Because the brain is being pressed in places
that other wise would have room to grow.

Im not trying to alarm you (Sorry) but it is very important.

She may also want to visit a Genetic Specialist they deal with
this kind of thing all the time. There she can get lots of help.

If you need more info by all means email me. I will help the best way I can.

Finding out your child has a serious medical condition really rocks your world.

Part of the process is going through a series of emotional stages that in two short days is pretty tough to cover. Denial or minimalization is part of that. Once parents collect themselves they persue necessary treatment.

Since it is unlikely if immenent care was needed that the doctor would not have the infant admited; even if he had to call in social services to do it.

His MOTHER has every right to seek a second opinon or in many cases to refuse treatments. Cat scans and MRI's on infants is not a minor procedure. Neither will be what I would expect to be catestrophic brain surgery. Surgery that might have a very poor prognosis. Some parents choose to spare their their infants heroic measures and try to enjoy whatever quality of life they have without procedures.

I understand the significant bond you have with this child and how terribly upseting it must be fore you. If you want to learn accurate information the Muesella foundation can probably tell you where to look and how to access accurate information. Since it is possible for Mental Retardation to result from this condition I am sure your States Developemental Disabilities Council (often called the D.D. Council) under Mental Health and Mental Retardation (Listed in the Blue pages of the phone directory) can direct you to all kinds of resources as extended family and her to resouches geared for parents.

What is most needed now is for you to support your Sister with kindness and undertanding and not second guest her thinking.

I don't know if this is considered a rare disorder but the National Order of Rare Disorder NORD can help you with a lot of hard copu for a ver minimum amount (Usually postage).

Good Luck. Sounds like a lucky baby already to have two people who care so much,