limb deformities

[rhombus]

Hello.

I am feeling mighty alone as I begin to navigate having a special needs child. My newborn (2 weeks old) son has limb anomalies, of all four limbs. I have been scanning through the special needs forum, but there do not seem to be many who have experienced raising a child with severe physical disabilities. Are you out there?

We know that my son will never walk without bilateral amputation and prostheses. His hands will likely also require surgery to enhance function (he is missing bones/digits with large clefts). He also has a congenital heart defect that will need surgery before his orthopedic issues can be addressed.

I am desperate for stories about children who have had similar deformities at birth. It's hard to know what to expect.

[fairejour]

I'm so sorry that you are going through this alone. My daughter's does not have a physical disability (well, actually, I guess technically, her inner ear is damaged so her deafness is physical) but I can hear how sad and alone you feel. Is your little one being seen through a children's hospital? Can you ask the Child Life Specialist to look for families with older children who have a similar disability? I just want you to know that you aren't alone, and that it will get better.

[kittynurse]

Hi and welcome to the special needs forum!  I don't have a child with the issues you described but just wanted to let you know you aren't alone.  I recall there was a mama here in the past whose child had some issues with their hands (I think?) so maybe she will come along and give you some advice.

Martha

[BeautyforAshes]

I don't know exactly what your child's condition is, but you might search "arthrogryposis" for possible support sources.  I know a little one with it, and I know it affects all four limbs to varying degrees.

[Linda on the move]

I'm so sorry that you are going through this. My DD's issues are completely different (autism).

For me, the toughest part of being the parent of a SN kid has been making peace with the unknown. I always want to understand what will happen  next and prepare myself for that, but that simply hasn't been possible for me raising my DD at all. It's become part of my spiritual path, learning to let go and to accept.

[momtoS]

I read your other post....I had come back to see what had happened...I have been thinking about you and your baby.

I have absolutely no words of advice...just wanted to say that your little one is beautiful.