Newbie and worried...

[schoolmom]

We had a beautiful baby boy, William, last year (7-20-11) and he suffered a bpi affecting his right arm. He had use of his fingers from the start and began therapy at 13 days old. We have seen several specialists and they have said everything from "he just needs therapy" to "he needs surgery now". We got a referal to ST louis Childrens hospital and they reccommeded surgery at 9 months. we decided to wait til he was a year old then evaluate his progress.

He has been in OT for 1 year and we went back to childrens hospital and the doctor again recommended surgery. The doctor told us that with surgery he would his range of motion to about 80%, but we would not know for about 7 months if the surgery was a success. William is at 70% range of motion now. full use of hands and wrist. he likes to keep his elbow bent tho.

We decided not to have surgery. we felt that the risks outweighed the benefits - but I am stil worried if we made the right call. Any thoughts?

[katep]

Sorry to hear of your struggle. Yes, I would be concerned about him keeping his elbow bent. This is a common sign of internal rotation contracture which, if left untreated, can cause the child's shoulder joint to grow malformed and predispose them for shoulder problems later down the road. Has he had an MRI of his shoulder? What is the basis for the surgical recommendations? Some doctors are way too quick to recommend surgery (IMO) but sometimes there is obvious impact on the child's skeleton and something must be done or they might lose what function they do have as they grow.

Kate

[schoolmom]

he had an MRI and they said the skeletal formation was fine. the doctor wanted to do surgery because he cannot raise his arm above 90 degrees with out his arm brace. he can raise it to about 85 without his brace and 125 with his brace.

[Tuckersmommy]

2nd and 3rd opinions always help.All doctors are different.What was the nerve damage? My son is going in for a tendon transfer surgery the 14th Because of a shoulder complication.He has hardly any external rotation outward but we are thrilled with the progress he's made in 3 years:-) He had a nerve graft at 6 months of age and minor Botox procedures twice since then.This is his final surgery,it's tough as a parent to make this call.The what's if you face daily is so hard to handle.But this health issue unfournatly can be time sensitive- so defiantly get a 2nd opinion.And ask as many questions as u can think of...I Love Love Love this website & all the people on it with helpful tips,prayers & words of encouragement