Welcome to our Web site on Hemophilia, meet our family
& have some fun along the way at some of our favorite places.
This web site is about Hemophilia mostly, but we also have a little about our family and links that we enjoy.
My son David is 5 years old. He was diagnosed with Hemophilia at the age of 5 weeks. Hemophilia runs in my family, but my mother had only girls and I was never taught anything about Hemophilia much and didn't know I should be tested as a carrier.
At 5 weeks David was circumcised in my OB's office. I had explained to the OB that Hemophilia runs in my family all during my pregnancy but he said that because I didn't have any problems with my first pregnancy, which was a girl, that I had nothing to worry about. Well, me being young and believing that doctors know "what they are talking about", I listened to my doctor. At 5 weeks David was circumcised at the doctors office and we then took him home. I had never had a boy before and wasn't sure how much bleeding to expect, but after changing a couple of "diapers soaked with blood", I called the doctor. By now the office was closed for the day and I had to go through the answering service. The doctor called me back and said that it probably looked like more blood then it really was because the urine was mixed with it. Well, I trusted the doctor again & waited to see. After again changing another soaked diaper, which looked like more blood then urine in it, I called him again. Well after getting the same response and the doctor seeming irritated that I had bothered him again for this, we decided to take David to the ER.
Thank God that we did, or he wouldn't be here today.
After getting to the ER the nurse looked and said that it was definitely not normal for the amount of blood in the diaper. They started running tests and I let them know of the Hemophilia in the family, as I had the doctor before.
24 hours later, and after the "longest" night of my life, watching my little 5 week old baby lay there getting blood transfusions to replace the blood he was losing while we waited for the results, not knowing "what" was fixing to happen in our lives or if he would even live through this. We finally got the results. He was indeed positive for Hemophilia A (Moderate).
Thus began our journey into a new life, one of being scared, guilt, and not knowing what to do next.
David did pull through like a champ after receiving Factor VIII Concentrate to stop the bleeding and went home a week later.
My mission by doing this web site is to hope that I can educate someone along the way or help someone find information that they need.
David is 5 years old now and doing great. By looking at him you wouldn't know he had Hemophilia. He loves to play and do the things most little boys his age do. We do home infusions for him which made life so much easier for all of us. I am in the process of learning how to infuse him now myself and it's going good. I can't wait for the day that we don't have to wait for a nurse to arrive and I can just give him his medication.
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