Ambassador Stories
 • 
January 4, 2022

I Know Firsthand the Treatment Options Are Not Adequate

Featured imageBethany is wearing a pink shirt that says "My Voice Is My Superpower," and she's holding two of her children.
Bethany, the co-founder of the Allo Hope Foundation, describes how her experience with alloimmunization and HDFN changed her life forever.

Bethany is a co-founder of the Allo Hope Foundation and an Ambassador for AllStripes’ alloimmunization and HDFN research program. She is committed to ensuring families impacted by alloimmunization and hemolytic disease of the fetus and newborn (HDFN) have all the information they need to get the proper care. Below, she shares how her life has changed since finding out she was positive for anti-Kell antibodies.

Alloimmunization is when a woman creates red cell antibodies after being exposed to a blood type that is different from her own. Usually that exposure happens after a pregnancy or blood transfusion. These antibodies aren’t harmful to the woman, but if she becomes pregnant, they can be harmful to her fetus and cross the placenta during pregnancy, attacking the baby’s red blood cells. This is called hemolytic disease of the fetus and newborn, or HDFN. 

We didn’t know anything about this until we got pregnant with our third baby, a little girl. In the routine blood work, the results came back positive for anti-Kell antibodies, which I had never heard of before. Our doctor explained my titer, or amount of antibodies in my blood, was very high (1,024).

I was concerned that the baby would be anemic because my titer was so high, but the maternal-fetal medicine (MFM) team we’d been referred to did not monitor the baby for anemia until later in the pregnancy.

I didn’t know what to do. In our culture you are not supposed to question the doctor. I felt powerless to protect my baby.

Finally, at 17 weeks, I went in for an appointment and said I wasn’t leaving without a scan. It was really hard for me because I hate confrontation. I wondered if I’d been overreacting, but unfortunately, the scan revealed that our daughter was extremely anemic. Fetal anemia can be treatable if it is detected before it becomes severe. Our daughter, Lucy Dair, died a little over a week later at 19 weeks gestation. We had gone in for a procedure and as I was being prepped we watched Lucy’s heart slow down and stop. It was the worst moment of my life.

As we grieved the loss of our daughter, we longed for another baby. I started doing more research and reached out to the doctor who conducted a study on plasmapheresis and IVIG treatments. Thirty minutes later he called me on my cell phone, to discuss my experience and answer all my questions. It really helped us figure out what our next steps were.

We did get pregnant again, with another Kell-positive baby girl, and were able to relocate to another state in order to be treated by this doctor. He was incredible, he was so experienced and knowledgeable. We used plasmapheresis and IVIG treatments and our baby, Nora, had five IUTs before she was born healthy at 38 weeks

Long story short, we went on to have two more babies using the same treatments, and our doctor recommended another specialist who was closer to home, only four hours away. We now have five living kids. 

During my pregnancies, I started a blog to keep track of my experience. A lot of women started reading and finding it a helpful source of information, and I learned that other women around the world were having very similar experiences. So I teamed up with a few other women I met along the way and we created the Allo Hope Foundation in 2019.

The foundation is mainly focused on  providing patient advocacy, support and education for families, as well as research and improved treatment options. I know firsthand that the treatment options available are not adequate. Working with AllStripes, we hope to help move along research because it's desperately needed for this disease.

Something I love about AllStripes is that they give power to the patients. I remember how powerless I felt during my pregnancy with Lucy. AllStripes gives  patients access to their own medical records. It would be so helpful to have my medical records from my pregnancies in one place. 

Alloimmunization and HDFN completely changed my life. I feel like I was a different person before losing my daughter. I’ve had to learn to live this new life and rebuild from the ground up. My pregnancies after Lucy, even those that had a good outcome, were incredibly traumatic. They involved painful, invasive procedures and lots of risks. They were incredibly taxing emotionally. Right now, I am on antidepressants and medication for anxiety. That all started with these antibodies. 

Our experience with HDFN has also helped us understand what is truly important in life and what is worth fighting for. Before Lucy, we did not appreciate life the way we do now.

If you have been impacted by
alloimmunization & HDFN
,
learn more about the benefits of joining AllStripes
by visiting our
alloimmunization & HDFN
research program page.

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