Well, we found out this week that Boston does have Von Willebrand Disease. It's a hereditary bleeding disorder that has a fifty fifty chance of being passed on with EACH child conceived. Sean's family has type II A and that means the bleeding is moderate to severe. Their blood is missing the factor that causes it to clot correctly. The blood will actually form clots, but they aren't good and blood oozes out of the clots. People with Von Willebrand Disease bruise easily and even minor cuts and scrapes can take an extremely long time to stop bleeding. For instance when Boston got his PKU test (the heel prick) he bleed almost completely through the gauze, where as you or I would maybe have a little bit of blood on it. Also, as they get older people with Von Willebrand Disease tend to start bleeding at their joints and if they aren't treated can cause severe pain and crippling. As terrible as this sounds, it really isn't that bad because it's all preventable.
At this point all this means for Boston is when he gets circumsized he will have to have a medicine called Humate P. It's the stuff that his blood is missing in order to clot correctly. Unfortunately, it's given through IV. I'm going ot have to learn how to give him the injections. :( Who wants to learn how to do that? I know that in reality it's not going to be that bad, but I still don't want to do it. Luckily, I won't have to learn how to do that until he is older. For now if anything happens to cause a bleed then he would have to go to the hospital and they would treat him. We also will be getting him a medic alert ID bracelet as well as getting a sticker for our vehicles so if we were ever in a car accident the EMT's would know what to do.
Our pediatrician referred us to Seattle Children's Hospital's Pediatric Hematology department, so we will be making a trip or two up there. The pediatric hematologist will help us better understand exactly what this means for Boston and help us to create a plan of action in case of emergency. I know we're in God's hands, so I'm not worried!
Die Pinguine aus Madagascar (2014)
9 years ago
Sounds like you are taking all the precautions and informing yourselves about how to deal with it.
ReplyDeleteMy husband's boss's family deals with hemophilia which is a blood disorder that affects clotting as well and only is shown in boys. The girls have all had their blood checked to see if they carry the DNA for it because if they carry it and they have a son, he will have it. They have camps and all sorts of things that they take their whole family to.
Yeah, Hemophilia and VWD are very closely related. In fact most of the time we have to tell the doctors that it's Hemophilia because they know what that is, but they have never heard of VWD. Unfortunately though, VWD can affect women, so I really hope that if we ever have a girl she doesn't have it!!
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