Crap. Overall von willebrand is not a huge deal (at least it hasn't been in my case). Before and after surgeries I get DDAVP and I avoid taking aspirin, and sometimes I bleed a little more excessively then others. That's about the extent of it. However, in talking with their hematologist today with the babies they want us to watch for a few things as they continue to develop.
If they ever hit their head we need to call hematology immediately. As they begin to teeth they are prescribing a medication that can help with any excessive bleeding in their gums, and once the babies start to walk they want to see the babies again to examine how they're bruising, and obviously any major trauma with the chance of bleeding this is important information. They also really want us to get medical alert bracelets for the babies (and they actually want me to get one too).
I was really hoping they could just avoid all of this. I just told Emerson though that if and when she should decide to have children don't let them put her under general anesthesia because of the von willebrands. I still wish I would have questioned that decision a little more.
Blah.. not the end of the world just something else that we and they will have to deal with forever.
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