Wednesday, August 20, 2008

Hemophilia Carrier

This is an article I wrote for the Midwest Hemophilia Association.

It was the day before I left for Wilderness Camp last August. I was excited and even a little nervous. I thought I had butterflies in my stomach, but I would soon find out there was something else fluttering in me. That afternoon, my husband and I were overjoyed to find out that we were expecting our first baby! As I watched the kids at camp that week I knew that there was a chance that my child would be at camp in 8 years. I first found out about hemophilia when I was seven. I attended the very first MHA Wilderness Camp with my mom, dad and brother. From the beginning my dad made sure that I understood what hemophilia was and why I was a carrier. Now that I was pregnant though, I wanted to know more! There is not much information out there for carriers, so I have compiled a top five list of things you should know if you are a carrier who is expecting. I’m not a doctor or a nurse. These are just my personal opinions and things that I learned.1. Talk to your spouse or boyfriend. Within a week of meeting my husband Brian, we had discussed that I was a carrier. I tried to teach him as much as I could about hemophilia. Once I was pregnant he knew what to expect if Trenton did in fact have hemophilia. Even with this knowledge I know it was not easy for Brian to find out that his son would not be able to be a Marine. I do know that he appreciated knowing ahead of time all of the great things he COULD do after he was born. 2. Talk to your HTC.I was pretty worried about childbirth and I wanted to make sure everything was going to go as smoothly as possible. The week before I was due I talked to both Judy Kauffman (Kansas City) and Lisa Holm (Columbia). They both gave me excellent advice and also reassured me that I would be fine. 3. Meet with your anesthesiologist. I only have one regret in this process. I did not talk to the anesthesiologist ahead of time. I had planned on having an epidural. Both HTC’s had recommended having my factor levels tested during child birth because of the risk of hemorrhaging afterwards and also to see if you are able to have an epidural. My doctor and the hematologist at the hospital I delivered at did not think this was necessary. The anesthesiologist however would not give me the epidural until she knew what my factor levels were. I had taken Amicar when my wisdom teeth were pulled and she was concerned about this. So, in the middle of child birth they checked my factor levels and then gave me the epidural. If I had met with the anesthesiologist ahead of time, she would have had my levels tested. I would have had the epidural almost two hours earlier and my husband and I would have been much happier people. 4. Don’t get frustrated when the cord blood clots.Because Trenton had a 50/50 chance of having hemophilia, they needed to test the cord blood. It clotted three different times. My dad and I initially thought we were dealing with incompetent nurses and doctors. I was getting really frustrated until I talked to Judy. She explained that this was very common. They ended up having to stick Trenton days after he was born. The day we got home from the hospital we found out that he had hemophilia. 5. Be an advocate for your child.Judy talked about this at the Family Fun Fair last year. It stuck with me and I’m glad it did. We knew that Trenton was to have NO sticks until after we found out if he had hemophilia. Right away a nurse tried to take him to the nursery for shots. Brian and I quickly explained that Trenton might have hemophilia. She left for a minute and then came back with post-it-notes that said “No Sticks Please”. She placed them all over his portable crib. I think she would have caught it if we hadn’t said anything, but it doesn’t hurt to speak up for your child!
Trenton is 4 months old now and weighs almost 100 lbs. (Not really, but he seems that heavy!) We are going to start facing new challenges soon like crawling. We have survived two rounds of shots with little to no bruising. In October Trenton will have some minor surgery. That will be our first experience with infusions. If you are a new mom or an expecting mom, please don’t hesitate to e-mail me with any questions.

1 comment:

v1ck13 said...

you'll have no worries with this as the child get older they don't bleed as easy as they do now... i have two friends who grew up with it i know all about the needles and everything you have to give to them, always keep factor 8? i think its called on hand it's not cheap ill let you know now, trust me you'll need it, again like you said be sure to speak up for you child because alot of people don't know about hemophiliacs,