Hi! I'd like to introduce myself. I'm Jen and I'm the mother of three. I have two daughters and one son, Jackson, for whom this blog is for. I wanted to share our story to other families that are dealing with hemophilia or any chronic illness, for that matter, so that you know you are not alone. The hemophilia community is a small one compared to others but we are mighty and strong and there for each other. So I'll try to make this simple and sweet and break Our Story into multiple blogs because:
1. I won't have the time to write it all
2. Who wants to read a looooonggg blog??
Our story begins in 2007 with an unexpected and VERY surprised pregnancy of our son, Jackson. And before you say anything...yes, I know how this happens. We thought we were done. We had two beautiful daughters and were happy with our family unit. We had grown together, loved together and faced a Type 1 Diabetes diagnosis in 2005 with our then 4 year old. We were good. But I guess God had other plans for us...and it came in a brand new bundle of joy...Jackson!
Hemophilia runs in my family. My maternal grandfather had it as did his brothers. He died in his 30's from complications during a surgery. My mom was 3 or 4 when he died. I had two cousins who were born with hemophilia. I remember as a kid knowing that hemophiliacs were bleeders but didn't know what that really meant.
My mom never got tested to see if she was a carrier. I never did either. I knew enough to alert my OB/GYN that hemophilia ran in my family. I had some crazy cycles during my time of the month and lots of break through bleeding on the weeks that weren't my scheduled cycle but nothing that could have possibly alerted my OB/GYN that I could be a carrier. It wasn't until we found out that we found out we were having a son that it really bothered my mom. Enough that when I was 8 months pregnant she said something that made me go into action. Maybe it was her tone, not so much her words that made me call the OB/GYN and ask to be tested as a carrier. I didn't know I should have specified Hemophilia A, Factor 8. They did a generic carrier test and rushed it to the Mayo Clinic. I received the results the day after I had Jackson...not enough info. But we knew. Fortunately my Doctor's decided to treat me as I was a carrier and that our son was a hemophiliac. No forceps's, no long pushing and no circumcision.
I was fine with the plan. Everything went well with the delivery on March 7, 2008! He was beautiful!! Born healthy, weighing 8 lbs. and full of piss and vinegar! The heel prick came and he bled. and bled. and bled. and we knew...Our town had a crazy out of season snow fall the day Jackson was born. It was a Friday and it snowed 12 inches!!! In March. On the Southwestern tip of Ohio. We don't get that kinda snow! We were snowed in. They released us on Monday with an immediate trip to Cincinnati Children's Hospital to the Hematology floor. It was late in the day; around 4pm. They did a blood drawl and I just kept praying that it wouldn't be hemophilia. The Dr came back and said he had it. Severe A, Factor 8. My husband looked at the Dr and asked what our son's life expectancy would be. We had no idea. We knew that my family members who did have it all had passed on. Hemophilia = Death to us.
Little did we know!! :)
part 2 to come later....