From Grief to Global Change: A Q&A with Bethany Weathersby, Founder of the Allo Hope Foundation

Written by Melissa Schenkman, MPH, MSJ

Bethany Weathersby, founder and executive director of the Allo Hope Foundation, joins us to share her deeply personal journey through maternal alloimmunization and how the loss of her daughter Lucy led to a global mission to prevent harm, stillbirth, and infant death due to Hemolytic Disease of the Fetus and Newborn (HDFN).

For those unfamiliar, what is maternal alloimmunization, and how does it affect pregnancy?

Bethany: Maternal alloimmunization happens when a pregnant woman’s immune system sees her baby’s red blood cells as foreign and creates antibodies to destroy them. These antibodies can cross the placenta and attack the baby’s red blood cells, leading to a condition called Hemolytic Disease of the Fetus and Newborn, or HDFN. It can cause severe anemia in the baby, and if left untreated, can result in stillbirth or serious complications after birth. The tragedy is that while it's rare, it's also very treatable—with the right care and knowledge.

You had two healthy pregnancies before learning you had this condition. Were there any warning signs or discussions with your doctors?

Bethany: None. During my first two pregnancies, I never heard a word about alloimmunization. I’m A positive, so I wasn’t in the commonly discussed Rh-negative group where providers give a RhoGAM shot to prevent sensitization. Because of that, no one thought to mention other antibodies like anti-Kell, which is the one I developed. 

It wasn’t until my third pregnancy, during a routine prenatal visit at nine weeks, that I found out something was wrong. My OB looked concerned and told me my bloodwork showed anti-Kell antibodies. He admitted he didn’t have experience with the condition, and that this was serious. That moment changed everything.

What happened next, and how did you find the information and care you needed?

Bethany: I was referred to a large teaching hospital, but even with a team of 11 maternal-fetal medicine specialists, they didn’t have a clear treatment plan. I quickly realized I needed to become an expert in this disease if I wanted to save my baby’s life. But at the time—this was 2013—there was almost no accessible information online. I didn’t even know what words to search. Eventually, I found a BabyCenter forum where other alloimmunized women were sharing their experiences. That community taught me more than any doctor had at that point.

Unfortunately, despite everything I tried, our daughter Lucy died just shy of 20 weeks from severe anemia and fetal hydrops. It was devastating.

What was it like emotionally, not only to lose your daughter, but to know that it could have been prevented?

Bethany: The grief was overwhelming. Stillbirth is more than pregnancy loss—it’s the loss of a child and all the hopes you had for them. You go through labor and delivery, make burial or cremation decisions, and then your milk comes in—but there's no baby. It's physically and emotionally excruciating.

Knowing that Lucy’s death was preventable added another layer of pain. I had to work through a lot of anger and forgiveness. But over time, I’ve come to see Lucy as a catalyst. She changed me. Her life, even though it was short, gave me a sense of purpose that I never could have imagined. I carry her with me in everything I do.

After Lucy’s death, you started a blog. What inspired that decision?

Bethany: I needed to process my grief, and I’ve always done that best through writing. I was also exhausted trying to explain this complicated condition to friends and family over and over again. So I thought: let me write it all down in one place. At first, it was just for my own healing—and maybe to help a few people.

But within weeks of publishing, I started getting emails from women all over the world. They were saying things like, “This is the clearest explanation I’ve found,” or, “You helped me understand what’s happening to my baby.” That’s when I realized the need was so much greater than I’d imagined.

And that’s what led to the Allo Hope Foundation?

Bethany: Yes, though I kept hoping someone else would start it! I had no background inmedicine or nonprofit leadership. My degree is in education. But as I kept helping families—sharing what I’d learned, connecting them with doctors like Dr. Ken Moise who saved my later pregnancies—I saw a pattern. When women had access to accurate information and a proactive treatment plan, their babies survived. It was that simple—and that powerful.

Eventually, I told Dr. Moise about my idea for a foundation. He said, “You can do this. I’ll support you.” With the help of generous families and advisors, we raised just enough to cover legal fees, and the Allo Hope Foundation became a reality in 2019.

You mentioned Dr. Moise helped with your later pregnancies. Can you talk about how your care changed?

Bethany: With Dr. Moise’s guidance, we followed a strict protocol: early ultrasounds, regular MCA Doppler scans to monitor for fetal anemia starting at 14–15 weeks, plasmapheresis and IVIG treatments starting in the first trimester, and intrauterine transfusions when necessary. This proactive approach delayed anemia and gave our babies a better chance. Thanks to him and the incredible team supporting me, I went on to have three more healthy children.

What have been some of the Foundation’s biggest accomplishments so far?

Bethany: Honestly, the biggest impact has been the steep drop in preventable baby deaths among the families we support. We now have a group of over 2,000 alloimmunized women, and before the foundation, we saw loss after loss. Now, I can’t even remember the last time one of our members lost a baby. That’s huge.

We’ve also created point-of-care educational materials for doctors, launched a podcast, contributed to upcoming evidence-based guidelines, and supported families across the globe, often in countries with no access to treatment. Every piece of that has been made possible by an incredible team of physicians, patients, and volunteers.

Looking back at the last 12 years, what are you most proud of?

Bethany: I’m proud that Lucy’s life sparked this movement. Her short life continues to save others. And I’m proud of all the women in our community—how fiercely they advocate, how deeply they love, and how bravely they support each other. We’ve taken something tragic and turned it into something life-giving. That’s an incredible legacy.

Want to hear more of Bethany’s story? Listen to the YMyHealth Podcast!