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New born with Bilateral Hememila

Hi Everyone.
We are parents of a new born who was born with bilateral hememelia. 3 digits on right foot, and 2 on left. The right foot has a heel bone, the left does not at this point.
We are going to BC Childrens hospital in a few weeks to speak with a specialist about long term forcasts, possible amputations etc etc...
Knees and hips are normal.
There isn't alot of information or support out there, so please, if you can help out, any information would be greatly appreaciated. Send your email and I will respond.
thanks Gino/Katherine