Educate yourself. Ask questions until you understand, even if it’s hard to speak up, and you feel silly asking questions. Don’t stop asking until you understand because this is your body, and this is your baby. You deserve to know what is happening in your body and what’s happening to your baby.
As a part of our “Unstoppable” series, I had the pleasure of interviewing Bethany Weathersby.
Bethany Weathersby is a mother and HDFN (hemolytic disease of the fetus and newborn) patient advocate. During her third pregnancy in 2013, Bethany was diagnosed with maternal alloimmunization and her daughter, Lucy, was diagnosed with HDFN. Since this is a rare disease, Bethany, and her husband Josh, struggled to find the right care and treatment plan. Unfortunately, they lost Lucy at 19 weeks to anti-Kell antibodies. Determined to continue their family, Bethany partnered with two maternal-fetal specialists who supported her throughout her next three pregnancies, helping her carry those pregnancies to full-term.
In 2019, Bethany founded the Allo Hope Foundation, a 501(c)(3) nonprofit organization dedicated to providing resources and support for alloimmunized women and HDFN patients. Today, she continues to advocate for moms and babies across the world and offer hope through the foundation and her blog, Losing Lucy and Finding Hope. Bethany and Josh, live in Tuscaloosa, AL with their five children, Liam, Asher, Nora, Callum, and August.
Thank you so much for doing this with us! It is really an honor. Our readers would love to get to know you a bit better. Can you share your “backstory” with us?
I grew up with five kids in my family, so I always wanted five kids of my own. I loved the chaos of it and the sweetness of having built-in friends wherever we went. My parents were missionaries, so I grew up in Africa and we moved all around. Wherever we were, I had friends, because there were so many siblings. I remember as a kid thinking, “This is what I would love for my family when I’m older.” Thankfully, my husband also wanted a large family. Our first two pregnancies were typical, healthy pregnancies. We had two boys, both born at 41 weeks, and they were two years apart. We assumed that the rest of my pregnancies would play out the same way. We were not prepared at all for the third pregnancy.
Do you feel comfortable sharing with us the story surrounding how you were diagnosed with maternal alloimmunization, and your baby was diagnosed with hemolytic disease of the fetus and newborn (HDFN)?
Yes, so, in the first trimester, pregnant women have routine bloodwork done. Part of that bloodwork is testing for red cell antibodies, which I did not know. When I was pregnant with my third baby, we went in for my first appointment at 9 weeks. I had an ultrasound, and the baby looked perfect and was growing right on track. Then, my obstetrician (OB) said, “There’s a problem with the bloodwork, and you have tested positive for anti-Kell antibodies.” I didn’t know what it meant. He explained that I had something called maternal alloimmunization and my baby was at risk for HDFN. Receiving the diagnosis of this rare disease was very hard. Even the OB did not have a lot of information on it to share with me. I left that appointment with so much fear and so many unanswered questions. What type of risk were we facing? Was there risk for me? Was there risk for the baby? I had no idea what to expect. I think this is one of the hardest parts of getting a rare diagnosis — that there aren’t a lot of resources available, and the patient often has to educated themselves. I felt anxious and unprepared.
What mental shift did you make to not let that “stop you?”
As a mother, you will do anything to protect your child. The more I knew about the disease, the safer I felt. So, I searched for information online and tried my best to educate myself. There weren’t a lot of resources available, but I did learn mostly through reading other women’s stories. I learned what the treatment should look like. My OB referred me to a large teaching hospital, and I quickly realized that I was not receiving the care I had hoped for. In the end, my baby died because she did not receive the close monitoring and proactive treatments that she needed to survive. After we lost her, there was a big mental shift that had to happen. Our doctors told us, “This is a condition that you will have with all of your subsequent pregnancies, and it will probably be more severe with the next pregnancies, which means your babies are not going to survive.” My husband and I had to really think through, how and if we would grow our family. Do we just stop and have two kids instead of five? That’s a big difference. We both had this deep feeling that there were more children waiting for us in the future. We didn’t have the option anymore to just get pregnant and have a living baby. We considered the risks and the burdens that we faced with growing our family. We looked at our options, and every single one came with a heavy burden, whether it was a financial, emotional, or serious risk. We decided that it was worth the risk to try again, even if it meant we would lose another baby. To us, that was the better choice rather than doing what was “safe” and just not having any more kids.
Can you tell our readers about the accomplishments you have been able to make despite having maternal alloimmunization?
The first thing that comes to mind is completing my family. My husband and I had to do our own research, we had to educate ourselves on this disease and despite our doctors telling us, “You can’t have any more biological children,” we had to make that decision for ourselves. We had to take the initiative and reach out to the experts in the field for help. Then we had to find a treatment plan that we felt comfortable with and push hard to receive that care after our baby died. To find that medical care we had to leave Alabama to find doctors who were experienced treating this disease. I went through a lot of painful invasive procedures during my pregnancies for my three babies to survive. So that’s my biggest accomplishment — completing our family.
What advice would you give to other people who have similar conditions?
First, educate yourself. Ask questions until you understand, even if it’s hard to speak up, and you feel silly asking questions. Don’t stop asking until you understand because this is your body, and this is your baby. You deserve to know what is happening in your body and what’s happening to your baby. Second, understand what the right medical care looks like. Don’t leave that up to the medical care team because this is a rare disease. It’s your disease — own it. It’s your responsibility to understand what the right medical care looks like. Don’t settle for less. If that means speaking up, advocating, getting a second opinion, changing doctors, or traveling to another state or country to find the right care, do it. It’s so worth it. I had to travel to another state, quit my job, live in the Ronald McDonald House for five months, and then give birth 11 hours away from my home. My babies are alive because of it. Go the extra mile for the right care.
None of us can achieve success without some help along the way. Is there a particular person who you are grateful towards who helped get you to where you are?
Dr. Ken Moise, who is the Maternal-Fetal Medicine Specialist (MFM) at the Comprehensive Fetal Care Center, in Austin, Texas, and Dr. Thomas Trevett, who is an MFM at Georgia Perinatal Consultants in Atlanta, Georgia. Both provided the best medical care to me during my last three pregnancies. They respected me as an important part of the care team and included me when making medical decisions for me and my baby. They also supported me and my choice to grow my family the way that I felt best. They left that decision up to me where other doctors had said, “You have two living healthy children, you need to stop there,” or, “There’s no hope, you know, there’s absolutely no hope,” just because they didn’t know how to treat it. Dr. Moise and Dr. Trevett said it’s up to you and this is the care I can provide for you, and I’m going to support you in whatever decision you make. I appreciated that so much. They are such kind, generous and humble men. I owe everything to them. We named our son Callum after both doctors, so his two middle names — Joseph and Thomas — are after Dr. Moise and Dr. Trevett. Also, I founded the Allo Hope Foundation, which is a nonprofit organization that supports patients facing HDFN. Both doctors were very important in helping me do that and they supported me all through the process. Now, they’re both on our medical advisory board. They are also helping research new treatment options for this disease — looking for women to participate in a clinical trial of a less invasive therapy that may one day help other families facing a diagnosis of HDFN. I appreciate them and their commitment to their field and patients so much.
How have you brought goodness to the world despite your condition?
Hopefully, I’ve used this traumatic experience of losing a child and going through these three high-risk pregnancies to help other patients facing the same disease. I started a blog after my daughter Lucy died to chronicle my journey to complete my family and explain to my family and friends what the disease was. Through that blog, I was able to connect to other patients all over the world who were also going through these pregnancies and struggling to find the right medical care. So, as I learned more about the disease and how to advocate, I was able to share that with other patients. They were then able to have a better understanding of the disease and advocate for the right treatment in their own pregnancies. I do know that there are babies out there who are alive because of that. This work led to the founding of the Allo Hope Foundation to provide support, resources, and advocacy on a larger scale to patients and providers facing HDFN.
Can you share five things you wish people understood or knew about moms with maternal alloimmunization and babies with HDFN and why?
1) We deserve to make our own choices about growing our family. It’s a private decision, and not a decision to be made by friends, family members or doctors. 2) We shoulder the heavy burden of receiving treatment and monitoring as the patient all while parenting and advocating for our baby who has HDFN. It is a lot to carry emotionally. 3) We need support and help during our pregnancy. This could be childcare for other kids, bringing a meal, praying for peace and safety, or simply encouraging us along the way. 4) HDFN is a temporary disorder that only affects the baby in utero and shortly after birth. With the right treatment, our babies go on to lead normal lives. 5) Many patients with this disease receive suboptimal or outdated care unless the patient knows what to advocate for. There is a huge range in treatment practices and protocols between centers.
Can you please give us your favorite “Life Lesson Quote”?
In this situation, one of the best life quotes given to me was from my mother, and it is “Don’t grieve what isn’t lost yet.” My mom said this to me often after my daughter, Lucy, died. We suffered a complex loss, not only losing our daughter but also losing all our future children, according to what we were told. I was grieving the loss of my large family and I was grieving my pregnancy experience. I couldn’t bear the thought of ending my child birthing experiences like this. Laboring and giving birth to your dead baby absolutely destroys the birthing experience. It’s supposed to be this beautiful, life-giving experience, but instead it becomes a lifelong trauma. So, grieving the loss of having another birthing experience. Also grieving the fact that I would never have a daughter. My mom would say, “Yes, Lucy is dead. We grieve deeply for her, but don’t grieve all these other losses that haven’t happened yet, when there’s still hope.” She was right, because I did go on to have a daughter and I got to have three more pregnancies and birthing experiences that were beautiful, and we have this big family now. The birth of a living baby was so redemptive, and I look back and I think, I wish I had not grieved so much, because those things were not lost. So often, the limitations that others set for you don’t have to be your limitations. You can still choose hope.
Is there a person in the world, or in the U.S. whom you would love to have a private breakfast or lunch with, and why?
Melinda Gates. She’s a co-founder and co-chair of the Bill and Melinda Gates Foundation. A few years ago, I read her book called The Moment of Lift: How Empowering Women Changes the World. It had a big impact on me and really motivated me when I was forming my foundation. Melinda Gates is invested in fighting disease, poverty, and inequity, especially when it affects women and girls around the world and in impoverished countries. HDFN affects families all over the world. In most countries, there’s no treatment for it. I had so many treatments during my pregnancies for my three youngest children to survive. Most of those treatments are not available in other countries, so those babies usually die. I would love to sit down with Melinda Gates and chat about HDFN and the global burden of it. Then, come up with a plan together to lighten the global burden of the disease. Also, after my baby died, and I was in the hospital, I asked my doctor, why isn’t there a preventative shot for my type of antibodies, which is anti-Kell, like there is for anti D? Why wasn’t that an option for me? And he said, not enough people have it. People just don’t care about it that much because it’s rare. I’ve always thought Melinda Gates, would care. She sounds amazing and she’s so brave, and she tackles huge issues, and I would love to tackle this issue.
Have You Had a Pregnancy with HDFN?
You may be eligible to participate in a study that is evaluating the safety and efficacy of an investigational drug in reducing the risk and severity of anemia in the fetus. Learn more: https://globaltrialfinder.janssen.com/
This was very meaningful, thank you so much. We wish you only continued success on your great work!