HOC Blog

“Just a Carrier” by Jenna

My name is Jenna Stadler. I am a carrier of Hemophilia A. As a child, I always knew it was a potential that I was a carrier of a bleeding disorder because my mother’s biological father was a severe A hemophiliac and my mother was a carrier. However, it really never affected my family because my parents had three daughters. We never really talked about hemophilia. When I became pregnant with my first son, my mother had brought it up that I should be tested if I was having a boy just in case I was a carrier. I really did not think much of the situation and thought “there is no way I am a carrier of this”. I went to my 20-week anatomy ultrasound and found out I was having a boy. Right away my physician brought up that we should do the necessary testing to know if I am a carrier of Hemophilia A as my son would have a 50/50 chance of being affected if I was a carrier. At this point, I started looking up what hemophilia even was. I still continued to think “there is no way I have this”. After about a week I received a call from my physician letting me know that I was a carrier and that she was referring all my obstetric care to a high-risk physician at a different location. This is when Hemophilia became a real to me. It was the scariest news I had ever received. Not only was I going to have my first baby, but he also could have hemophilia. I was pretty much still clueless at this point about what this even meant for my baby and me. This is when I really started to research and told myself that I needed to be prepared for the worst and that there was a 50% chance of him having a bleeding disorder. It was scary, I felt alone and like I had no one to talk to. When I went to see the high-risk physician, she told me that it would be the safest for me to have a Cesarean section to protect my baby. She also referred me to see an adult hematologist to talk to me about what being a carrier had meant for me. This confused me because I thought I was just a carrier. Little did I know I may be affected as well. I went to see the Hematologist the next week who informed me I would need to have factor VIII during my Cesarean section because I had a higher risk for bleeding due to my lower factor VIII levels which was part of being a carrier. I was in complete shock. With the collaboration of providers, I was seeing, my delivery went as planned. My son was tested right away for Hemophilia and was then diagnosed with Severe Hemophilia A. Of course, at this point, my entire focus was on him. They continued to give me factor VIII and kept me for a week to make sure I did not have any additional bleeding. It was my first baby, so I did not know normal vs. abnormal. I figured they knew exactly what they were doing so everything was just fine. I continued to focus on my son and what his diagnosis meant for him. We were then referred to the Hemophilia Outreach Center.

Fast forward to today, I have two amazing little boys (2 and 4) who both have been diagnosed with Hemophilia. They are both established with the Hemophilia Outreach Center for their care. I began to receive a lot of education and learn more about Hemophilia. It was not until my second son had turned 2 that I thought about asking to be an established patient myself at the Hemophilia Outreach Center due to heavy menstrual periods. I started to wonder about my factor VIII levels since they were only taken during pregnancy. I wondered if my “carrier” diagnosis could be a reason for some situations I have come across in the past, such as excessive bleeding from dental work, reoccurring bloody noses as a child, the tons of bruises that cover my body, bleeding after childbirth, or excessive menstrual bleeding. I reached out to the nurses at the Hemophilia center regarding heavy menstrual bleeding and asked if there was anything they could do to help me. This is when I became and established patient myself at the Hemophilia Outreach Center. I was able to be tested to see what my factor VIII levels were. I came back at a level of 11%. Which explains why I am not only a “carrier”, but I am very much affected by Hemophilia and I am able to receive treatment.

I’ve had a bunch of people ask me about my children’s Hemophilia diagnosis and say, “So you’re JUST a carrier then?”. My answer to them use to be “Yes, I carry the Hemophilia gene, which is the reason all of my sons will have a 50/50 chance of having Hemophilia”. Ever since receiving care for myself, I have changed my answer to that question. I now am able to explain that I am not JUST a carrier, but I am also affected. I explain that any woman who carries a Hemophilia gene may be affected due to her factor VIII level which can vary from woman to woman.

The Hemophilia Outreach Center has made a huge difference for me living as a Hemophilia carrier. I no longer feel ashamed to speak about my bleeding issues as well as my children’s. I have been greatly educated in what my options are as a carrier and how I may be affected. If it weren’t for the Hemophilia Outreach Center I would still be dealing with a lot of issues and just continuing to tell myself it is normal.

The care team at the Hemophilia center has especially enhanced my care as a carrier with my current pregnancy. After being an established patient and explaining to them what issues I had after childbirth, they did not hesitate to jump on board and reach out to my OB physician to establish an individualized care plan that would work for me regarding to my deficient factor VIII levels. This is not always an easy task to get another provider to take a care plan from a Hemophilia Center, but the physician and nurses worked hard to get through to my provider that they were caring for me from a Hemophilia aspect and would continue to follow up with me after my third son is born to ensure I am not having any bleeding issues. At one point, I had also mentioned to the nurses that I was made to stay inpatient in the hospital after my children for a week and this is something I really do not want to be required to do because I now know I am able to self-infuse factor VIII at home and be with my family. The nurses were able to educate me and provide training to me on how to self-infuse to shorten my hospital stay to a “normal” stay. Knowing I will be able to be home with my other children only a few days after having my baby is very exciting to me, especially with Covid-19 because they will not be able to come visit me.

I am very thankful to have the Hemophilia Outreach Center caring for not only my boys, but also for me. I am also thankful for all of the education we have received to help us live as normal as a life as possible despite living with Hemophilia.

 

 

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