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Limb differences + Heart Defect

Hello.

I am new to the world of special needs parenting. My 7 week old son was born with severely affected limbs (ectrodactyly in both hands and bilateral tibial hemimelia) as well as a congenital heart defect (double outlet right ventricle with a ventricular septal defect). We do not know if he has other issues going on or not.

Are there any other parents here who have experience with limb issues, in particular? My son will need amputations and prostheses for any hope of walking. We have met with orthopedic specialists and the recommended timeline for amputating is sometime before his first birthday.

He's so little, and this is all so new (as an aside: we didn't learn of his issues until the week before he was born, and they're so rare and severe it was assumed that he would not live after birth). I am incredibly overwhelmed. I have two older children (13 and 6) without special needs.

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Permalink Reply by kbrtmyr on February 20, 2012 at 5:52pm

Congratulations on your third baby - I bet he's a charmer! While I am not a parent to a child with limb differences, I have two close friends parenting strong, smart and personable kids with Limb differences. Are you aware of iCAN? It is a great resource for parents such as yourself who are new to this condition. http://child-amputee.net/

I just want to encourage you - your son has the world open to him. Limb differences aren't holding back my friend's kids and I am sure that won't hold him back.