Bethany Weathersby was nine weeks pregnant when she went in for her first ultrasound. At 31 years old, she wasn’t expecting anything out of the ordinary. After all, she’d already given birth to two healthy boys, Liam and Asher, and she and her husband Josh were thrilled that this time they were having a girl.
So she was shocked to discover that the seemingly healthy infant she was carrying was at risk of developing a rare blood disorder known as hemolytic disease of the fetus and newborn (HDFN). In severe cases, the condition can lead to significant complications for the baby and it can even be fatal—so some doctors advise women not to plan future pregnancies if they have had severe HDFN.
Simply put, HDFN is caused when the blood types of the mother and the fetus are incompatible; as a result, the mother develops antibodies that attack her unborn baby’s red blood cells. If left untreated, this can cause severe anemia in the baby, leading to organ failure and death. Worse, available treatments—including intravenous immunoglobulin (IVIG) administration and intrauterine blood transfusions (IUT)—can be difficult to endure, are not always effective and can be risky for both mother and child.
That’s why Janssen Research & Development, part of the Janssen Pharmaceutical Companies of Johnson & Johnson, is working to advance treatments for HDFN. For Pregnancy and Infant Loss Awareness Month, and to highlight the urgent need for less invasive treatments, Weathersby shares the story of how she became her own best advocate and is now helping scores of women who are also facing this difficult diagnosis.
Bethany Weathersby: “I always knew I wanted a big family. I have four siblings, and growing up I loved the fun and the chaos of it. My parents were missionaries who traveled around the world, and everywhere we went, my brothers and sisters were built-in friends.
My first two pregnancies, first with Liam and then with Asher, were typical. So when I got pregnant with my third, a girl we decided we’d call Lucy, I figured the experience would be no different. And at that first ultrasound, she looked perfect—you could see her little arms and legs moving.
Then, afterward, my doctor came into the room and I could immediately tell that something was wrong. He told me that because of an antigen in Lucy’s blood, our blood types were incompatible. Blood work showed that I’d developed antibodies—he called them anti-K, or anti-Kell, antibodies—which could cause anemia in my baby.
He went on to tell me that my antibody count, or titer, was incredibly high, which I later found out is even more dangerous for the baby: The critical titer number to stay below was 8; my count was 1024. (Since that time, guidelines have been updated, and anti-Kell antibodies are considered critical at any level and should be monitored as such.)
At the time, he mentioned HDFN, but I didn’t know what he was talking about. I just wanted to know if my baby would be okay. All he could say was that he was going to refer me to a maternal-fetal medicine specialist at a large teaching hospital an hour from where we lived.
When I got home, I tried looking up HDFN online, but all I found were a few journal articles; this was in 2012 and there wasn’t much out there. I couldn’t get an appointment with the specialist for five weeks, and during that time, I did discover more information on an online parenting website and community, where I started reading years of archived conversations about the disorder. By the time I went in for my appointment, I felt a terror I had never experienced before: I knew my baby could die. I also understood the basics of the condition and had an idea of what the next steps would be—or so I thought.
Advocating for herself—and her unborn baby
I was expecting the doctors to schedule an MCA Doppler, which measures blood flow in the baby’s brain; if the blood is traveling too fast, that’s a sign of anemia in the baby. But to my surprise, the doctors said they wouldn’t do the scan until around 22 weeks. From what I’d read, I knew anemia could develop in the baby as early as 15 weeks and I was at 14 weeks. I was hoping to be proactive and try a treatment called plasmapheresis, which extracts dangerous antibodies from the mother’s blood, and IVIG to help protect my unborn baby, but the doctors told me they weren’t necessary.
During my 16-week ultrasound I asked my doctors if they could do an MCA Doppler scan to check Lucy for fetal anemia. They insisted that she looked perfect on the ultrasound and there was no need to check her blood flow. Fetal anemia is not visible on regular ultrasound, which is why MCA Dopplers are so important. I felt powerless to protect my baby.
Finally, at almost 18 weeks, they agreed to do the Doppler scan. There were several doctors in the room at the time, and as soon as they did the scan, everyone fell silent. It turned out that Lucy was severely anemic, and I would have to come back so that she could get an IUT—a procedure that provides blood to a fetus—the next day. The head doctor said, ‘Thank you for pushing for this scan. I don’t think your baby would be alive if we’d waited even one more day.’
They did the procedure early the next morning and it was terrifying: They basically stick a needle through your abdomen, trying to get to the right spot to give the baby the blood transfusion. When they finished, they assured me everything went smoothly. But after that, I never felt the baby move again.
Every week, women would reach out to me so I shared my lived experience and mentored them, helping them advocate for the right treatment and encouraging them through their pregnancies and losses. When I’m able to help others because of what I’ve learned, it feels as if Lucy is making an impact on the world, even though she’s not here.
The next few days were the longest of my life. Lucy wasn’t moving, but I was supposed to wait a week before I went in for a follow-up.
Finally, I called the hospital and told them I didn’t think my baby was alive. When I went in, they found a heartbeat but would not do another MCA Doppler scan to check her for anemia. When we went back a week later, an ultrasound and MCA scan showed that her heart and organs were damaged from severe anemia. The prognosis wasn’t good, but I begged them to give her another blood transfusion.
As they did the ultrasound to prepare for the IUT the next day, Josh and I watched on the screen as her little heart beat slower and slower. We realized we were literally watching our daughter die. The next time the doctor put the ultrasound wand against my abdomen, Lucy was gone.
The doctors later told us that there was a 50% chance that every baby of mine would have an incompatible blood type—and that the disease would be even worse the next time because my antibodies would be stronger. Basically, they made it clear that we could never have biological children again.
Exploring other options to grow their family
Over the next two years, Josh and I looked into a number of other options to grow our family—from sperm donation with a donor who had a compatible blood type to surrogacy to adoption—but for various reasons, none of these worked out. Finally, Josh and I decided to try for another baby using plasmapheresis and IVIG treatments.
I got pregnant again in 2014 and traveled out of state to be treated by a different team of maternal-fetal medicine specialists who specialized in treating HDFN. In order to have plasmapheresis, I’d need a surgical procedure to place a permacath in my chest with two tubes coming out. One tube would pull the plasma out of my body and extract the dangerous antibodies; the second tube would replace my red blood cells. After three plasmapheresis treatments, I would then have to sit for an eight-hour infusion of IVIG, which contained healthy antibodies from donors that wouldn’t harm the baby. I had to have weekly IVIG infusions for the rest of the pregnancy or until the baby—another girl, who we’d named Nora—became anemic.
The treatment gave me terrible migraines, muscle aches and nausea, and I was so breathless and exhausted that I couldn’t even stand up to make a meal. But it was worth it; it felt like an honor and a privilege to suffer in place of my baby. Nora didn’t need a blood transfusion until 24 weeks, and it was a success; afterward, she was no longer anemic.
We kept the transfusions up every three weeks. At one point during a procedure, I even asked my doctor, ‘What would you think about a future pregnancy?’ I think he was surprised, because he said that in all his decades of doing this work, no woman had ever asked about a future pregnancy on her way to an intrauterine transfusion. But it was already on my radar.
Nora was born at 38 weeks. We were overjoyed for all the obvious reasons, but it was also incredibly healing for us to be able to finally go home with a healthy baby girl.
A year later we started thinking about getting pregnant again. A lot of people couldn’t understand why we weren’t satisfied with two healthy kids, let alone three, and we had our doubts, too.
The side effects of plasmapheresis were so difficult, and we had been through so much. But the boys were 4 and 6 by then and we wanted Nora to have a sibling who was closer to her age. When we weighed the difficulties against any regret we might feel in the future for not trying to have the children we wanted, we decided to go for it.
This time, the baby, a little boy, didn’t need a blood transfusion until 28 weeks. The side effects from the treatments were still terrible, though, and it was especially hard to go through it all with three kids. What helped was knowing that my baby was feeling okay even if I wasn’t. Our son, Callum, was born six weeks early, but without any lasting complications. He’s now a healthy 5-year-old.
Finding hope by helping others
Early on in this journey, I started a blog called Losing Lucy and Finding Hope to help me get through the loss. I also used it to lay out the basics of HDFN, posting links to whatever research was out there. By 2017, it had really gained a following.
Every week, women would reach out to me so I shared my lived experience and mentored them, helping them advocate for the right treatment and encouraging them through their pregnancies and losses. When I’m able to help others because of what I’ve learned, it feels as if Lucy is making an impact on the world, even though she’s not here.
Three years ago, I started a nonprofit called the Allo Hope Foundation. Allo stands for alloimmunization, the process through which a woman makes red blood cell antibodies as a result of incompatible blood types between mother and child. It’s been amazing providing educational resources to patients and providers; we post new studies and maintain a Facebook patient support group of 1,200 members and we now have a podcast.
In 2020, not expecting a worldwide pandemic, Josh and I had another baby boy, August, with the help of our amazing doctors, weekly treatments and 7 IUTs. We now have the five kids we wanted and the peace of knowing we are done, though we always wish Lucy were here with us, too.
What I’d say to other women is that if you have this condition and your doctor tells you it’s not possible to have more kids, know that antibodies don’t have to decide the size of your family. As long as you advocate for yourself, there is reason to have hope.”
