A Mom’s Story: Working and Living with Hemophilia

I’ve worked for Bayer for two decades in different areas of the business. It wasn’t until I joined the Biologics team in 2002 that I discovered an area that felt like a perfect fit to me. And it wasn’t until 2012 that I would realize what a perfect fit it really was both professionally and personally.

In the Hematology Business Unit, we offer products and services that make a difference for people living with hemophilia — something that’s very important to me. Hemophilia, with about 400,000 diagnoses worldwide¹ is a rare bleeding disorder where the blood lacks or is deficient in a protein to help it clot². In Hemophilia A, which occurs in 1 in 5,000 live male births in the U.S., the blood clotting factor VIII is lacking.

Over the years, I’ve learned a lot about what patients with hemophilia live with. You might not realize these patients don’t bleed faster than those without the medical condition, they bleed longer³. But it’s the bleeding you can’t see that’s their real concern; internal bleeding into knees, elbows and ankle joints is a major risk for hemophiliacs. This bleeding can cause severe swelling, which can lead to permanent joint damage⁴. Until the mid-1970s, hemophiliacs only had a few options to treat their condition. Bayer has a long history of research and development in the area of hemophilia and I have been privileged to contribute to this meaningful work.

My personal and work life intersected in 2012. Through my job, I came to learn about a serious health issue. Even fewer treatment options are available for hemophiliacs living outside of North America, Western Europe, Australia and Japan. The life expectancy of a child with hemophilia varies depending on the care they receive. In the absence of adequate treatment, many children die before reaching adulthood. Inspired by the opportunity to make a difference, I shared this information with my family and we talked about what we could do. My husband and I always wanted a large family. My husband, children and I made the decision to adopt a child with hemophilia.

Adam XueLai joined our family May 27, 2012. Adam was born in Beijing, China and had lived in the Beijing Children’s Welfare Center for about 5 years. He has severe hemophilia A. We are thankful Adam received some factor VIII infusions while living in the orphanage.

By no means, however, is transition a one way street. It takes parents and teens, working together to make this transition happen. If a teen is reluctant or unwilling, the transition likely won’t be effective. If parents are reluctant or unwilling, the result is probably the same. Both parties have to support each other’s goals.

Although I was well educated about hemophilia, it’s very different to live with hemophilia 24 hours a day, it effects every aspect of your life. As a mom, I’m always concerned about him getting hurt or who will infuse his factor when I travel for work. I’d heard about infusions so many times but to actually give one to your child, which hurts them, is another thing. When I first learned how to infuse my son, it wasn’t going well. One day, after four failed IV attempts, I called another mom and she told me exactly what I needed to hear at that time: “It’s not about you. Get over yourself and just get it done.” And then I did—I got it done.

Moms are often the ones that take responsibility for the family’s healthcare. So, when hemophilia is in the family, moms are often the ones giving the infusions, coordinating care with the HTC, talking to the school nurse, and caring for rest of the family. As I quickly realized with Adam, it’s not easy. Meeting other moms who are in a similar situation can be a tremendous source of support. This realization inspired me to champion the M-Powered program for moms, which is one of several programs Bayer supports for the hemophilia community. Through M-Powered, moms meet in a relaxed, home-like environment and share practical tips on everything from how to talk to the school nurse to how to work with the HTC. Maybe more importantly, they also build a community of empowered moms who can turn to each other for support when they need it the most.

I’m thankful to work for an amazing company! I’m so inspired and grateful that I’m now focusing on other ways I can give back. Recently, I began to collaborate with some of my Chinese colleagues at Bayer. I am excited that my “perfect fit” job is helping me explore possible ways to extend a helping hand in China. I’m excited by the prospect of making an even bigger difference.

1,2,4 https://www.hemophilia.org/About-Us/Fast-Facts
3 https://www.wfh.org/en/page.aspx?pid=646