Although it is fact that my son, Christian, has severe hemophilia, and a fact that we had no family history, the treatment for his condition is not as simple a fact. I appreciate my ability to have a choice and voice in his treatment options, but sometimes I feel even more fear that I will make the wrong choices for my son. What if my son gets an inhibitor based on the factor we choose? What if my son gets an infection or bad reaction if we have to use a port? What if I traumatize him with needle phobia when we start to infuse regularly? What if I can’t learn how to infuse him as quickly as I hope? Will my choices fail him in hemophilia and, in making those decisions, will I fail him as a mother?
I probably sound dramatic, but honestly some of these thoughts cloud my mind. After working myself up, I now realize that all I can do is make the best choices I can and try not to look back with regret or have “mommy guilt.” What I can do is make the best-informed choices possible. Yes, I’m a new mom in the hemophilia community and wonder if I am being too idealistic about cautiously making each decision about my one year old’s condition. Thankfully, one thing I feel like I can control in this “honeymoon” stage is making informed choices for my son: like choosing his factor product.
When Christian was first diagnosed after his circumcision, we were so overwhelmed with trying to get his bleeding to stop that I didn’t even try to understand what factor really was and what different options we had. In fact, it wasn’t until a month after his hospitalization that I even knew what brand name of factor he was given. I found out only because I was asked for his medical information and completed a document to have that information released. Upon trying to understand and digest what it meant for my son to have hemophilia, I realized how little I knew about his treatment options.
It’s scary to think that at that point of our new diagnosis I didn’t even know we had treatment options, much less understand WHAT options we had. I’m not here to tell you that at 17 months into this I have it all figured out, nor that I have solidified all my son’s treatment choices. But one choice I did feel was a priority to make and understand was the differences in factor products.
I first received a chart¹ from my HTC of the most common factor products that explained which products are recombinant and which are plasma-derived. The chart further showed what are first, second and third generation recombinant products.¹ After studying the differences and doing some research, I scheduled a meeting with my HTC doctor and nurse to discuss the questions and concerns I had about these products. Although my doctor and nurse tried to answer my questions, every time I mentioned something I learned or referred to a study I had researched, I kept hearing, “Yes, but that’s not conclusive evidence.” This is something I am now immune to hearing! Despite my research, I felt like I was going to pick a number out of a hat when choosing factor for my son, because there weren’t any unbiased studies to show why one factor was better than the next.
My HTC doctor and nurse tried their best to appease me with all of my questions and frustrations of trying to pick a product. I tend to lean on the more “natural” side of things when it comes to health, such as having an out-of-hospital water birth and embracing all things involving holistic health, I still wasn’t sure about plasma. I just have so many questions on plasma vs. recombinant.
Still not feeling satisfied with my quest for knowledge about factor products, I started asking questions of anyone I came into contact with, including my pharmacist, older hemophiliacs and other parents. When my son was 8 months old, we attended our first NHF conference. At the conference I felt completely overwhelmed until there was a Q & A session where I boldly asked questions about factor and what was mostly used. It seemed like I was the only one asking tons of questions. I was shocked to hear that about 90% of young hemophiliacs represented in the room were receiving the identical treatment, despite the fact that each individual’s bleeding is expressed differently. After the session I asked another newly-diagnosed family what factor product they had chosen for their baby. Confused, the mom looked at her husband and said to me, “What do you mean? We are just doing what the doctor told us.” Then she paused and told her husband, “Maybe we should look into this.”
While there is nothing wrong with her response, it was a realization to me that most of us get caught up in the newness of the diagnosis – our first priority is simply trying to prevent our crawling and falling babies from having bleeds. I feel blessed and lucky that we have even had a “honeymoon” stage to take time to clearly think about these important decisions. I’ve heard many stories where the diagnosis of hemophilia is quickly followed by bleeds, and in some cases inhibitors, without any “honeymoon” stage or down time at all. At least for me, until I calm down from crisis or survival mode, I am grateful that I have time to actually think ahead about these big questions.
If you don’t feel confident about your choice in factor, know that you are not alone and it’s okay. If you are beginning your quest for knowledge and feel like you are banging your head against the wall, you’re not alone and it’s okay. After finding some great research studies, questioning many hemophiliacs, questioning doctors other than my own, and being cautious of the sources of information, I finally feel confident about our choice to go with a plasma-derived factor product.² I don’t question others for their choice and hope to not feel judged or silenced by my choice. Just like any parenting style or decision: you do what you feel is best for your kids. And similar to parenting, your choices can evolve, modify and change in the future. My advice is to give yourself grace in making decisions, give yourself confidence and a voice to talk about your choices openly, and give kindness and respect to others’ choices. If you are seeking information, seek it wisely. In my short journey in the hemophilia world, I have learned that concrete information is scarce and the wisdom from the community and trust in your own inner instincts as a mother is the best you can do.
Samantha lives in Texas with her husband, Alex, and boys, Adoniah (3) and Christian (almost 1 year old).
*Note: “Infusing Love: A Mom’s View,” is a blog collection of personal opinions and a representation of individuals experiences. While extensive efforts are made to ensure accuracy of the content, the blog entries do not represent HFA or its Board of Directors. The blog is also not intended to be construed as medical advice or the official opinion/position of HFA, its staff, or its Board of Directors. Readers are strongly encouraged to discuss their own medical treatment with their healthcare providers.
1. This is an example of a clotting factor chart from the Indiana Hemophilia & Thrombosis Center: http://www.ihtc.org/wp-content/uploads/2013/09/4-Pharm-Clotting-Factor-Products-Booklet.pdf
2. For more information regarding recommendations about products that are used for the treatment of hemophilia and other bleeding disorders, see the National Hemophilia Foundation’s Medical & Scientific Advisory Committee (MASAC) recommendation #218, “MASAC Recommendations Concerning Products Licensed for the Treatment of Hemophilia and Other Bleeding Disorders,” http://www.hemophilia.org/Researchers-Healthcare-Providers/Medical-and-Scientific-Advisory-Council-MASAC/All-MASAC-Recommendations