Bethany’s story continues with the growth of her family, learning from the mistakes made in Lucy’s treatment for severe HDFN. After Bethany becomes pregnant she goes to great lengths to keep her babies safe, moving out of state, undergoing frequent plasmapheresis and IVIG, many IUTs, NICU time, and post-birth transfusions. While Bethany’s proactive pursuit of treatment leads to the delivery of 3 healthy children, the loss of Lucy motivates her toward activism and the founding of the Allo Hope Foundation.
Bethany’s story continues with the growth of her family, learning from the mistakes made in Lucy’s treatment for severe HDFN. After Bethany becomes pregnant she goes to great lengths to keep her babies safe, moving out of state, undergoing frequent plasmapheresis and IVIG, many IUTs, NICU time, and post-birth transfusions. While Bethany’s proactive pursuit of treatment leads to the delivery of 3 healthy children, the loss of Lucy motivates her toward activism and the founding of the Allo Hope Foundation.
Episode themes:
Terminology used in this episode:
Cell-Free Fetal DNA (cffDNA): This noninvasive test uses the fetal DNA that is found floating in maternal circulation to check the fetal red cell antigen status. It requires a blood sample from the mother. cffDNA can be used for pregnancies complicated by anti-Kell, anti-D, anti-C, anti-c, anti-E, and anti-e antibodies.
Intravenous Immunoglobulin (IVIG): An infusion of mostly IgG immunoglobulins that is made by extracting the immunoglobulins from the plasma of ~1,000 donors. It is thought to lessen the mother’s antibody response and delay fetal anemia. It can also be given after birth to newborns to treat hyperbilirubinemia. It may affect the efficacy of live virus vaccines for up to a year after administration.
Plasmapheresis: A procedure where the blood is removed from the mother, the antibody-rich plasma is removed, and blood cells are returned. This can decrease the antibody titer.
Allo Hope Terminology Library https://allohopefoundation.org/library/terminology/
Links mentioned in this episode:
Losing Lucy and Finding Hope blog: https://losinglucyandfindinghope.com/
HDFN Newborn Care Booklet: https://allohopefoundation.org/wp-content/uploads/2022/08/AHF-Newborn-Booklet.pdf
Prenatal decision tree https://allohopefoundation.org/library/prenatal-tree/
Post birth testing https://allohopefoundation.org/library/infant-testing/
Provider letter: https://allohopefoundation.org/wp-content/uploads/2022/08/Letter-to-Providers-Final.docx
Research for this episode provided by Bethany Weathersby and Molly Sherwood of the Allo Hope Foundation. Find more information at https://allohopefoundation.org
The Allo Podcast is produced and edited by https://www.mediaclub.co
Molly Sherwood:
The information shared on the Allo Podcast is not intended as medical advice. Your medical care decisions should be made in consultation with your physician, who is familiar with your specific case. Welcome to the Allo Podcast, by the Allo Hope Foundation. I'm Molly Sherwood.
Bethany Weathersby:
And I'm Bethany Weathersby.
Molly Sherwood:
So last time, we had talked about your pregnancy with Lucy, about finding out the issues with your course of treatment, how you came to learn about the disease, and your experience losing Lucy, living through that grief, and we're kind of now at a point in your story where we're looking to the future for your family. So, if anyone hasn't listened to that episode yet, which I cannot fathom, because I know it was sort of a much anticipated story, I think that our listeners will really, really cherish. So, if you haven't listened to that, go listen to that. It is really moving. So, let's talk more about you.
Bethany Weathersby:
All right, let's do it.
Molly Sherwood:
One thing I want to ask you, Bethany, starting off, because I will be the first person in line when you write your autobiography, but you haven't done that yet. So first, will you talk about where and how you grew up? Because I wonder if that plays into your desire for a large family.
Bethany Weathersby:
Sure. So, I have four siblings, so there were five of us, and I loved having a large family. I mean, it didn't feel large, it felt normal to us, but it was just fun, and always something going on, and I loved having built-in friends, I remember, just wherever we went. My parents were missionaries, so I grew up in Africa, and we traveled a lot, obviously changed schools a lot, and wherever we went, I had automatic friends. And so, I just loved having the siblings, and I've always been super maternal. I remember as a kid, one of my first memories is just me longing for my future babies, and imagining, "I wish I could fast forward time to that day when I get to meet my baby for the first time." And that was just the goal of my life, was to be a mother, and I always wanted to have five kids too, like I grew up with, because I wanted my kids to have those siblings, the built-in lifelong friends. So, I always hoped to have five kids.
Molly Sherwood:
It's so funny you say that, because I feel like before I ever fantasized about a wedding day or what my husband was going to be like, I thought about watching my kids play and be ridiculous, and even now having three boys, I love saying, "Time for your haircuts, boys. Come line up," and we just do things like that, just true day-to-day mundane motherhood.
Bethany Weathersby:
Right. That's really sweet. I don't know if that's just normal for little girls. I do remember my friends really being into the wedding, and marriage ideas, and thinking, "Eh, I don't really care about that, as much as the kids part."
Molly Sherwood:
Yeah, that's the means to the end.
Bethany Weathersby:
Yeah.
Molly Sherwood:
Yeah, I know.
Bethany Weathersby:
Yeah. Let me just say one more thing, I just thought of it. My mom had five pregnancies and five healthy children, and no complications, and as a child, that's what I expected. No one ever talked to me about... I guess that's kind of a depressing topic to talk to your little daughter about, but no one even gave me the idea that there was a possibility of something going wrong. And so, I have been pregnant 10 times and I have five living children, and my journey has been so incredibly different from my mom's, and that was just really different for me, and I felt really unprepared. Not that my mom could have known that that was going to happen. So, it's not her fault, it's just I just was not prepared at all.
Molly Sherwood:
And how can you prepare? I mean, it's sort of like what you're saying, nobody wants to sit you down and tell you all the things that could go wrong, and who's to say that at that time, you would even be receptive to hearing that or preparing for that? You just can't know.
Bethany Weathersby:
Right. Yeah. That's true. That's true. I do try with my daughter to phrase it carefully, so I say, "How many kids are you hoping to have one day?" Not "How many do you want? You can just have whatever you want." So, I do try to say, "How many are you hoping to have?" And recently she said, "I want to have four borned, and then one adopted." So, that was cute.
Molly Sherwood:
"Four borned." I like it.
Bethany Weathersby:
Yeah. Mm-hmm.
Molly Sherwood:
So, when you met Josh, was he on board with your five kid plan?
Bethany Weathersby:
Yeah. So actually, our first official date, before we were even serious, I mentioned, "One day, I want five kids. So, if you're not on board with that, we should just stop now. Let's just end it here, because there's no point in progressing, if that's not something that you would eventually want." So, I've always been really open about that, and thankfully, he loves kids, and wanted a lot of kids himself. So, it worked out.
Molly Sherwood:
It was perfect.
Bethany Weathersby:
Yeah.
Molly Sherwood:
So, transitioning into talking about how you continued on after Lucy died, knowing what you know now, what care should Lucy have received?
Bethany Weathersby:
They really should have taken the extremely high titer more seriously, especially since I had anti-cal antibodies, which can be really, really aggressive. We should have had plasmapheresis and IVIG treatments to be proactive in protecting Lucy from my antibodies, even before we knew how aggressive they were. You can take steps with such a high titer, you can take preventative steps with those treatments. And so we should have started MCA scans much earlier, preferably by 15 weeks. And that would've saved her life. Those two factors, early monitoring and preventative treatments, that's what she needed. And I did ask my doctors about both of those things and they said they were not necessary. So those two main things made a big difference in her younger siblings' outcomes. And then also the third obviously is having a very experienced MFM who has at least adequate experience performing IUTs. And that's really important with severe disease to have a doctor who has experience performing IUTs.
Molly Sherwood:
So yeah, one, this reminds me a lot of what you're talking about with what Lucy should have received, has actually since been incorporated into resources that the Allo Hope Foundation now offers, and has developed with the Medical Advisory Board. I know that we have that clinical decision support tree that's available on the website, that's super easy to digest.
Bethany Weathersby:
Yes.
Molly Sherwood:
It's just sort one of those flow diagrams. And Dr. Ken Moise developed that with us, and that shows MCA starting at 15 weeks in high-risk situations. Well, of course, this is all high-risk, but in incredibly high-risk situations. So anyway, we will have to post links to some of these resources that would be helpful for a mom in your situation. And-
Bethany Weathersby:
Mm-hmm. I do have to say I love that flow chart because it's so easy to follow, not just for patients, but MFMs because, and OB GYNs, because they're on the front lines, they usually are the first people to get that diagnosis and tell the patient about it. And it's such a rare disease that they don't, doctors don't see it often. And so sometimes it's just kind of hard to know what's the next step. And the flow chart is really clear and easy to follow. Okay, do this test and then depending on the results, follow the next step. And it just leads you through the right and the safe protocol. So I love that.
Molly Sherwood:
I love that too, and I remember when we were working through it was super hard to pare it down because obviously there's so much to know about this disease.
Bethany Weathersby:
Yes.
Molly Sherwood:
But you at one point said that the goal is if somebody has nothing but this chart, I want them to be able to keep their baby alive.
Bethany Weathersby:
Yes.
Molly Sherwood:
If you do this, God willing, this is your baby's best chance.
Bethany Weathersby:
We would hope. Yes. And it is just a framework. Obviously every patient's care is individualized. But I do remember, okay, going through that with my pregnancy with Lucy, and she would've survived if we had followed those steps. Again, God willing, we can't predict everything that will happen.
Molly Sherwood:
I think so too. And I know it's hard for you to talk about looking back what she should have had, because you bear that burden of feeling like, "Oh my gosh, if only I had known." And I know a lot of other women experience that too. So what do you tell yourself to bring yourself comfort from those negative feelings? Or what have you had to tell other women who are feeling like, "Oh my gosh, I only now know now after I endured this pain and this suffering."
Bethany Weathersby:
Yeah, that's really hard as a mother because you have this deep instinct to protect your children. And when your baby dies, and then especially later, if you find out that it probably was preventable, that's just so hard to accept. But looking back, yes, I see all these things that we could have done differently that should have been done, and she probably would've survived as a result. But at the time, I truly did my best. I did my very best. I didn't know then what I know now. I didn't know how to advocate then the way I do now. And I didn't know that I had to. That's the thing I had, I've grown up in this culture of you have to trust your doctor with these medical decisions. You let the doctor make the decision and trust that he's doing what's best for you always.
And so that was the mindset, and he's the medical professional. I don't have medical training, and that is how I was taught to think. And I did not know that there was a better way and a safer way to think at the time. And so I did my best. And a lot of times patients take on the responsibility that really belongs to the doctor. And I have to remember that I only had so much power at the time, and I'm not a doctor. I'm not the medical professional who had been trained to make these really tough medical decisions and know what the right protocol should be. And so I don't need to take on that guilt of not having the right medical care when it really was my doctor's responsibility.
And then to follow up on that, if I let that bitterness of my doctor did not do what was necessary to save my daughter's life, if I let that bitterness settle deep inside me, it could take over my life. And so I've had to forgive those doctors again and again and again. And that's how I find freedom. And I just get these feelings again, like, "Oh, they should have done this. Why didn't they care about her or see her value?" And I just have to forgive them, forgive them. And so, yeah, that's what helps me. And then I don't have the bitterness and I can channel the rest of that fire into advocacy.
Molly Sherwood:
Mm-hmm. And I also think it's so wonderful you say that when you see a miracle baby, somebody else's picture of their miracle baby.
Bethany Weathersby:
Yeah.
Molly Sherwood:
You truly feel joy. And that's really, I think, reflective of all the work you've done for yourself to be in that place.
Bethany Weathersby:
It is just the most, the sweetest feeling truly to see other women's healthy babies after they receive the right care. It's just almost like a pride. Or when you see your kids doing a... I guess the pride that I would have in Lucy kind of if she were alive. I just feel that when I see these other babies having these great outcomes and having the right care, and especially, oh my gosh, when I see the moms advocating for the right care and being courageous and speaking up for what's right and doing their research and asking the hard questions, such a great feeling just to see that.
Molly Sherwood:
I agree. It is so amazing to see. And I also want to add, because I really, really hope that we have a lot of clinicians who listen to these podcasts that we understand and respect all the things that these clinicians have on their plate too. '
Bethany Weathersby:
Absolutely.
Molly Sherwood:
And it must be very hard to know exactly what to do for every rare disease.
Bethany Weathersby:
Oh yeah.
Molly Sherwood:
So anyway, yeah-
Bethany Weathersby:
No, I've said to my MFMs multiple times, "How do you do this? This is so hard to me, from my perspective, it seems like such a hard job." You're making these life or death decisions, and that's a lot of pressure. And yeah, I've always been just really, really impressed with that profession. And I know that it would be so hard. And then also, babies don't always survive. And so they have to live with that. And then it's just heavy. It's a lot. So I'm so thankful for the clinicians, the care providers that work so hard for us.
Molly Sherwood:
Yeah, absolutely. And I know we're going to talk more in another episode about what to look for in the patient provider relationship. And so we'll dive into that more too.
Bethany Weathersby:
Yeah.
Molly Sherwood:
I want to talk about you after Lucy's loss, the thoughts you and Josh had that led you to feel ready to try again. So what was that interval of time?
Bethany Weathersby:
Yeah, that was really hard because we were grieving this deep loss and then also trying to plan for the future, what were our next steps? And we really wanted to avoid another loss like that. So that was just really scary thinking we could possibly end up here again. And I didn't think that I could survive it, another loss like that. So we didn't know which option to pursue. We had been told, "You can't have any more biological children because the pregnancy, next pregnancy will be even more severe." So we looked into every family growing option, truly. We looked into surrogacy, IVF with pre-implantation genetic diagnosis, PGD. We looked into plasmapheresis and IVIG in the next pregnancy, embryo adoption, foster care, infant adoption, sperm donation. We looked into every single one of those choices. And we prayed about each one too.
And I remember making a big list of pros and cons of each choice and just looking over them, praying about them, discussing them with Josh. And then we kind of just started with one of them and pursued it. And one after the next, they didn't really work out. We looked into sperm donation and Josh just in the end, didn't feel great about it. He couldn't really explain. He was just like, "I just don't, don't feel good about it." So then we moved on and then we finally settled on plasmapheresis and IVIG for the next pregnancy. We thought, "Let's do this."
I connected with Dr. Ken Moise and we thought maybe we could use those treatments to have a healthy pregnancy, but we could not get pregnant. And I am wondering if it was just the extreme stress of that grief of that year after she died. I don't know. But we had two very early miscarriages. And then I think after 13 months of trying, we were diagnosed with secondary infertility, unexplained. We had some testing, nothing looked out of the ordinary. And so after that, we pursued infant adoption and that's what we decided to go with. Which is a long story-
Molly Sherwood:
It is a long story. But suffice to say, you again sacrificed a lot personally and in your family, I know you even induced lactation to prepare for that-
Bethany Weathersby:
Yes. Yeah, we were all in, we did some fundraising because we were very low income at the time. Adoption is extremely expensive. And so we did a lot of fundraising and we were matched with a woman who was pregnant with a little girl. We even named the baby Scarlet May. And yes, I induced lactation because I wanted to breastfeed my adopted baby, which you could do. So cool. So I was pumping every three hours. I had breast milk stored in the freezer, and the baby's due date came and went. We didn't hear from the birth mother again. And we were like, "What's happening? Something went wrong," because we were in touch with her very often. And probably two weeks later, we found out that she had had the baby and placed the baby with a different family on the other side of the country without telling us.
Molly Sherwood:
That's insane. How was that even okay-
Bethany Weathersby:
It was all legal. We followed everything, all of the... every legal piece of advice. I mean, we did it all right. And that can still just happen. So we lost a lot of money and we were just devastated, honestly. We were just like, "Okay, we lost Lucy. We have this weird condition. We had two miscarriages and now we had this adoption loss and we have no money, which means no options."
Molly Sherwood:
Wow-
Bethany Weathersby:
Do you know what I mean?
Molly Sherwood:
Yeah, sure.
Bethany Weathersby:
So we were feeling really hopeless. I stopped pumping. There was no point. And I thought, "I guess I'll donate this breast milk." And when you are breastfeeding, most women don't have a cycle, a monthly cycle. So I was not having my period, I wasn't having a monthly cycle because I was pumping and my body thought I was breastfeeding.
Molly Sherwood:
Right.
Bethany Weathersby:
So I stopped the pumping. And then I never had my period. And I was like, "This is so strange. I don't know what's going on." And then I just randomly took a pregnancy test and I was pregnant.
Molly Sherwood:
Oh my gosh. That is wild.
Bethany Weathersby:
It was insane.
Molly Sherwood:
Then there was a scramble probably. You were like, "Oh my gosh, we need to line up her care."
Bethany Weathersby:
Yeah, it felt like an emergency. So we're like, "Okay, we're doing this. We're doing, we're going to try the plasmapheresis and IVIG."
Molly Sherwood:
Did you first go to your previous hospital with the thoughts of giving it a try? Or were you had decided you need to go see Dr. Moise and do what you need to do and plan with your plasmapheresis and IVIG?
Bethany Weathersby:
So we naively thought that the hospital we were at before with Lucy would have a completely different attitude now that they saw what happened with Lucy, they saw the whole thing play out. They knew how aggressive my antibodies were, and we just thought they would be on board with all of the extra measures and they would be really careful. And we had hoped that they had learned a lot from Lucy and from us. So we went back very optimistically to them, and pretty soon discovered that they basically wanted to do the same plan that they used with Lucy.
Molly Sherwood:
Which was not acceptable to you, of course.
Bethany Weathersby:
Right. Not acceptable. They still were not really on board with plasmapheresis or IVIG. And they didn't really want to start MCA scans much earlier, I mean earlier than they had originally planned with Lucy. But I wanted to start them at 15 weeks knowing how anemic Lucy was, how early. So I thought, we need to know, we start monitoring early. And they just said basically, "You just need to hope that this baby is cal negative like you." So if the baby has my antigen status, which is cal negative, then it would be a normal pregnancy. And they basically said, "That's your only hope of having a living baby." So they had already given up on the baby if she was antigen positive. Positive.
Molly Sherwood:
Wow. Yeah. I remember you said something about something a nurse told you that gave you the courage to move on to a different place to receive care. Cause you were feeling kind of bad that you know had already gone to these folks and this is what was near your home.
Bethany Weathersby:
So I was just like, "We're not doing this again." I had a completely different attitude then, and I knew now what type of advocacy needed to happen on my part in order to receive the right care. So I just kind of sat down with one of the main MFMs and said, "I laid out the plan, Here's the plan that I feel comfortable with that Dr. Ken Moise also recommends. And so I would like to follow this plan. If you're not on board, I'm going to go to a hospital that is on board." And so they said, "Well, we have to discuss it with our whole group of MFMs." And eventually after pushing a lot, and I said, "Here's Dr. Moise's phone number, please call and discuss with him if you have doubts," which they did. And after that they said, "Okay, we'll try it." And so they did start me on the plasmapheresis and IVIG, which I appreciate so much.
But soon I realized that they still lacked the experience with this particular disease that was necessary for my baby to have the best chance at life. And we just kept feeling uneasy with certain decisions. I had to push really hard to get that first MCA scan at 15 weeks. I had to say again to them, "If you don't do this MCA scan at 15 weeks, I will go out of state to another hospital that will give me the MCA scan at 15 weeks." And which is still really hard. It's really hard to say that to your doctor. I had spoken to my MFMs about possibly relocating to another state where Dr. Moise was and could treat me. And they had reassured me, "No, there's no need. There's no need." And I was really going back and forth and one day a nurse kind of snuck up. I was in actually the MFM's office to talk to him about something and that his door was open and she came up and really quickly ran in and whispered in my ear, "If I were you, I would already be in that other state with Dr. Moise."
Molly Sherwood:
Wow.
Bethany Weathersby:
So I know that took a lot of courage on her part. And that's exactly what I needed to hear. Because when you advocate and you have to speak up against, not against, but when you have to speak up for the right treatment, you feel like a crazy person. A lot of the times you feel ridiculous. You feel like you're going overboard or just causing unnecessary issues, being confrontational. And that's how I was feeling, "Am I just being ridiculous?" And so when she said, "I would already be there," that really confirmed that I was not being ridiculous. I was doing what's best for my baby. And so the next day we arranged to, I was going to be Dr. Moise's patient, and then we left two days later. It was an 11 hour drive, so it was pretty far.
Molly Sherwood:
Wow. Yeah. So you actually picked up and moved. Did you, all of you moved over?
Bethany Weathersby:
Yeah. Well, so I only had the two kids. So Asher, my second son, the day we drove to the other state, it was his fourth birthday. So he came with me and my mom came, and then my husband was working. He could not take off work. And he... then my oldest was in kindergarten, so they kind of stayed home together. And me and my mom and my youngest son just went and relocated and moved into the Ronald McDonald house near the hospital.
Molly Sherwood:
Wow, okay.
Bethany Weathersby:
Yeah-
Molly Sherwood:
That's a huge step to take for your whole family that affects your day-to-day life and everyone's day-to-day life to make it work.
Bethany Weathersby:
Yeah, it was really hard. I mean, I had to quit my, I just had a part-time job, but again, we were really low income and we really depended on that income from me. So I had to quit that. And it was very expensive to relocate and all of these extra expenses. Thankfully Dr. Moise was in our insurance network. I'm so thankful for that. But yeah, it was a big deal to split up our family like that. But I lived there for five months until she was born. She was born there.
Molly Sherwood:
Let's talk about when you did meet Dr. Moise in person and you got your treatment plan and you started with this pregnancy.
Bethany Weathersby:
That was such a relief. And my mom, she was with me and she always talks about that almost like a physical feeling of this weight being lifted as we walked into the fetal center there, just, we've taken this big step, we've driven over two days, and the whole time we still felt like, "Are we crazy? What are we doing? Is this really necessary?" And when we walked into that fetal center, it was like, "No, this is so worth it because we know that we are going to receive the right care and I don't have to fight for it. I don't have to fight every step of the way to receive the right care." And he was so respectful of me, even though I'm just the patient, but he really was kind and generous and respectful, and he valued my baby's life. It was just so obvious from the beginning.
I didn't have to convince him of my baby's worth. He treated my baby like his own daughter, even though she wasn't even viable at the time. And so he had the treatment plan. I felt so confident. It was so careful and so proactive. And actually one thing I loved was during my first appointment, he took me into just, I guess it was a little side room, and there was a big whiteboard on the wall and he explained the whole disease like I was his student.
He had a whiteboard marker and he just explained everything about it and said, "Tell me, give me all your questions." And I had a million questions of course. And he explained everything. And he didn't think like, "Oh, you're not capable of understanding this complex disease because you're just a mom." He respected me enough to give me all of the information. And I still remember all of those facts that he taught me that day, and I use them all the time now in this work. But it was just such a great partnership. That's how it felt, like we're working together for this baby's safety and survival.
Molly Sherwood:
This was when, it's funny you found out she was a girl. I'm sorry, everyone that-
Bethany Weathersby:
Yeah. Oh yeah-
Molly Sherwood:
But one thing that I think is hilarious about high risk pregnancies is I don't think I've met somebody who's had a high risk pregnancy who didn't find out the sex, because you see them on ultrasound all the time.
Bethany Weathersby:
Right-
Molly Sherwood:
I mean, people would always ask me, "Are you going to find out?" And I'm like, "How can I not? It's going to be smacking me in the face every week." So, anyways-
Bethany Weathersby:
Especially since you have all boys, pretty obvious.
Molly Sherwood:
Yes. Exactly. They kind of presented themselves. So-
Bethany Weathersby:
Yeah, I had so many ultrasounds. So yeah, even at I think 13 weeks, they were like, "Yeah, this looks like a girl." So we were so excited to have a girl, and we did confirm with amniocentesis that she was cal positive as well. So also just to go back to the first set of MFMs, just saying, "You just need to hope that the baby's cal negative." Well, if we'd gone with that plan, she would've died. Looking back, I'm so glad that I pushed for those proactive treatments because that's what saved her life.
Molly Sherwood:
And of course you did the amnio. And now I should add, I recognize that some patients do go with an amniocentesis now if the antigen status of the baby is unknown. But can you just quickly touch on what folks try to steer towards if they can, with the cffDNA testing? And then I know we'll talk about it more another time too.
Bethany Weathersby:
Sure. So at the time of that pregnancy, it wasn't really available. And so I felt like my only option was an amniocentesis, even though I was really, really terrified of it, because I just did not want to add any extra risk because there was so much risk already. And occasionally the amniocentesis can cause the blood to mix, which would increase the patients titer. And my titer was already so high. And so that was really scary to have that procedure done knowing it could potentially make this disease even worse. But at the time, it was the only option.
So after that, with my following two babies, there was a newer option, which was cell-free fetal DNA testing. It's just a blood draw that the mother has, and they can determine the baby's antigen status by testing fetal cells that are in the mother's bloodstream, which is so cool to me. And that can be done at 14 weeks for if you have cal or I think anti-E or anti-C. And the testing is not performed in the US but you can ship your blood to the Netherlands where they do the testing and then they just email you your results. So it sounds kind of complicated, but it's really accurate and it's safer than the amniocentesis. So that is now the preferred method of finding out baby's antigen status.
Molly Sherwood:
So much less invasive, although obviously it is still quite a burden to facilitate it. But I just wanted to put that plug in there because I know you did amnio and so much has happened since then. I wanted to make sure that folks know that there could be another option for something.
Bethany Weathersby:
Right. Yeah
Molly Sherwood:
For sure.
Bethany Weathersby:
Yeah.
Molly Sherwood:
Okay. So how did that pregnancy progress? What interventions did she require?
Bethany Weathersby:
So we were really scared and Dr. Moise was also just very on edge, I think just because knowing my past history with Lucy, so I mean, he wasn't stressed out, but he was just very careful with the monitoring. And she was kind of right under the 1.5 cutoff between 18 and 24 weeks. But she did not need her first IUT until 24 weeks. So that's a big difference between Lucy, who probably needed an IUT around 15, maybe 16 weeks. And then Nora, I just gave her name, but that's fine. She didn't need her first IUT until 24 weeks. And so that's the difference that those treatments made for me. And I was so glad that I was viable, even though just barely. But I had reached viability for that first IUT, and that was a really terrifying experience because of the IUT that I had had with Lucy then never felt her move again after that. So I just never had a successful IUT before.
Molly Sherwood:
So what was the IUT procedure like? I assume it was different. Just the whole protocol was kind of different.
Bethany Weathersby:
So Dr. Moise is the master. I feel like he has just done this so many times that he has really, he's really down to the tiny details, made it the best possible procedure for the mother and the baby. So he knew exactly what pre-medication to give to calm my nerves. He had a little machine in the OR, you know how it can be really cold? There was a machine blowing warm air under my blanket as I lay on the OR table.
Molly Sherwood:
Yes
Bethany Weathersby:
It was just so... and there was a nurse at my head the whole time holding my hand, making sure that I was feeling as comfortable as possible. And then they were really careful with the baby. They sedated and paralyzed her so that she would not be moving during the procedure. And they had, again, tons of people in the room because I had said yes, if she has to be delivered, if something goes wrong, which is very rare, but if she does have to be delivered, I wanted them to do everything possible to save her life.
So there was a NICU team and pediatrician, everything. They were just there in case. So that made me feel safe looking at that little bassinet, just I know that it probably wouldn't happen, but if she was born that they were ready and that made me feel really good. So they drew some of her blood out from the umbilical cord and they had a little machine in the OR that tested her hematocrit and hemoglobin right then. And her hematocrit was 26. I remember them calling it out because Lucy's hematocrit was six. And so this baby was much higher, much, much higher-
Molly Sherwood:
But still in need of an IUT?
Bethany Weathersby:
Yeah. Yes. Yeah, she still was low. So they filled her up and then they got the ending hematocrit and she was great. That was it.
Molly Sherwood:
I have a couple questions for my own memory. What's the threshold normally for an IUT? And then I recall you saying something about how even if the baby is quite anemic, you should not just pump them to the max. So what are those kind of couple things?
Bethany Weathersby:
Right. So I mean I think that maybe in our interview with Dr. Moise, he or Doc, I can't remember Dr. Trevett, but I think they know for sure. But if I'm remembering correctly, I think 31 and under hematocrit means, you know, should give blood. If it's above 31, I think there's not really a need to give blood. And then yes, if the baby is super low, they should not give more than three times. They should not bring up the hematocrit higher than three times the original hematocrit, if that makes sense.
Molly Sherwood:
Right. Which did happen, I think with Lucy, right?
Bethany Weathersby:
Yes. Yes. So hers was six, and so they should have only brought it up to 18, even though that's still anemic, they should have stopped and then done another IUT like 48 hours later or something like that.
Molly Sherwood:
Okay. And then after your IUTs with Nora, you also got a scan the next day just to check-
Bethany Weathersby:
Yes, that was great. They monitored really closely after the IUT, so they want to make sure the baby's been paralyzed and sedated. Oh, I forgot one part. I forgot to say that during the IUT, Dr. Moise, he put blood into her cord and then he went in a second time and put more blood into her abdomen. And that is to stretch out the time between IUTs. Every IUT comes with a risk with different types of risks, but there is a risk of death for the baby. It's very low, but there are risks. So you want to do the least amount of IUTs possible in a pregnancy. So Dr. Moise gave blood in the cord, which alleviated the anemia right away, and then he put extra blood in her tummy that would slowly be absorbed over the coming weeks to make sure she didn't drop quickly after that first, I guess, blood into the cord. All of her, IUTs were like that. It was a combination. IVT, and IPT, intra-peritoneal transfusion.
Molly Sherwood:
And then you also did that in subsequent IUTs with her too, or just that first one to get her up?
Bethany Weathersby:
He did it in every, every one.
Molly Sherwood:
Okay.
Bethany Weathersby:
Because he liked to try to space out the IUTs. So we had about, I think three weeks between all of her IUTs and she was never super anemic again. It was great. But they did monitor her closely after the IUT until she was moving well, her heart rate was great. And then the next day, 24 hours after the IUT, they scanned again just for peace of mind to make sure she looked great. And then that was so comforting to me because of my experience with Lucy where they would not scan her again for a whole week. And we were wondering that whole week, "How did she handle the procedure? We don't know." And so after every IUT Dr. Moise would scan the baby 24 hours later,
Molly Sherwood:
That wait is so excruciating when you just don't know how your baby is doing. I'm so glad you had that.
Bethany Weathersby:
Yes.
Molly Sherwood:
Okay. So the IVT, IPT, Lucy also received that though, right? Why was that different or less, say for her?
Bethany Weathersby:
Right. So remember she had something called ascites, which is the beginning of fetal hydrops, and that is fluid collecting in the abdomen. And so when that fluid is there, they should not inject blood into that fluid. The body is already struggling with this excess fluid. And so you're adding more fluid to that and the body cannot absorb it if there's ascites or fetal hydrops. And so that's why the IPT should not be done if there's fluid there.
And that's what happened with Lucy. And some doctors think that that can put extra pressure on the baby's heart, which is already struggling with this severe anemia. So Nora didn't have any signs of fetal hydrops, there was no ascites and she wasn't severely anemic. Her heart was in great condition. And so it was actually a good choice for Nora because it would help space out the IUT longer and her body absorbed that blood in the abdomen really well.
Molly Sherwood:
Which reminds me, this is all the more reason why you initiate these interventions before any signs of hydrops. I feel like I'm sure you've seen this over and over again. Some doctors look for that as the sign that they need to do something then.
Bethany Weathersby:
Yes, it's so often. Yes. I mean, we see this more often than you would think. That baby has a high MOM that's over the 1.5 threshold and the baby still looks great in all other areas. And so some MFMs think, "Oh, then the baby must not be that anemic, or we need to wait until there are signs of fetal hydrops," and the survival rate drops for the baby. If you initiate an IUT after fetal hydrops is already present. So yes, that's the whole point of the 1.5 cutoff on the MOM is to know when baby's anemic enough to need a transfusion but not severely anemic to the point of fetal hydrops.
Molly Sherwood:
That's helpful. Yeah, I'm glad we touched on that.
Bethany Weathersby:
Mm-hmm.
Molly Sherwood:
With Nora, she ended up needing how many IUTs and then what was her delivery like?
Bethany Weathersby:
So she ended up having five IUTs in all and they all went smoothly. Her last IUT was done at 35 weeks and then she was delivered. I was set to be induced at 38 weeks, but I went in the day before for blood work and they were like, her heart rate is kind of decelerating in a ways that we don't feel comfortable with. So they induced, it was actually just a few hours shy of 38 weeks. And so it was vaginal birth and she was just born healthy and beautiful and it was so healing and incredible because we had thought we would first of all never have another daughter, never have a biological living baby. And then here she was, she was just perfect. It was amazing.
Molly Sherwood:
Wow. So do you feel like her delivery was a huge part of just your healing?
Bethany Weathersby:
It definitely was, yes. Because the trauma of delivering a stillborn baby is just so intense and that just made this this beautiful... I mean, it was scary during labor, we would lose her heart, Nora, we'd lose her heart rate and then I would just think, "She's dead. I know it." So there were all these fears that accompanied that birth that weren't there with my first two. But it was such a big piece of my healing to be able to go through that again. Never thought I would be able to do that with a living baby. And then to have this warm live baby on my chest was just so... I don't even have words. It was wonderful.
Molly Sherwood:
Will you tell me a tiny memory or just a tiny moment from that day that you will never forget something of when you saw her or something that Josh did or anything?
Bethany Weathersby:
I guess just, I mean, there were so many, but I do remember breastfeeding her for the first time because I remember I had induced the lactation just because I really wanted to breastfeed again. And I thought that that part of my life was totally over. So just putting her to the breast for the first time. And she was pink. She wasn't anemic, she was not anemic at birth, she did not have any bilirubin issues. She didn't need any intervention. It was amazing. So I just had this healthy baby and I got to breastfeed her. And also the fact that she was not born like severely, not severely. She wasn't born super premature. We thought we just want to get her to viability. But here she was at 38 weeks. I mean that's full term.
Molly Sherwood:
Wow. And so what was her management like after she was born? Because it's funny, I feel like a lot of women, we are so nervous and focused on the pregnancy management, but then the baby gets here. I know for me, I completely forgot what I was supposed to say and do and look for.
Bethany Weathersby:
Yes. So I did... I was thankful that I was in a hospital that knew how to treat HDFN. And that's another, that's the main reason why we did not deliver here in Alabama, because I did not want to... that wait or that fear after birth. I wanted to know that she was receiving the right care. They were really, as soon as she was born, they took blood from her cord and tested it to make sure she wasn't anemic. And they really watched her bilirubin closely.
That's really important, those first few hours and days after birth because that can spike and cause permanent damage if not treated. And it's very easy to treat if you just monitor it closely. So one of the most important things, she was like perfect. She didn't have any issues. Her blood work was great, but Dr. Moise knew that babies with HDFN are at risk for delayed onset anemia. And so he said, "You need to find a pediatric hematologist back in Alabama and you need to give me their number because I'm going to personally speak to them before I allow Nora to be discharged from the hospital."
Molly Sherwood:
All right.
Bethany Weathersby:
And it's so great. It's so great when the doctors make that, they bridge that divide from doctor to doctor, because usually that's up to the parent actually. But he knew that that was super important, that follow up care. So he spoke to the pediatric hematologist and said, this is what the care should look like, weekly blood tests. And he made sure that we had that first appointment set up and scheduled before he allowed Nora to be discharged from the hospital.
Molly Sherwood:
That's a great plan. I love that sort of criteria of you should not leave until you have your next step scheduled.
Bethany Weathersby:
Right. He also sent me home with a printout of, and we have this on the Allo Hope website, maybe we can link it to this podcast in episode two, but it's a printout to take to the hematologist just covering basic follow-up care for babies with HDFN with delayed onset anemia. So that was really important because at four weeks and five weeks, Nora did need a blood transfusion. So she did become anemic weeks after birth and needed those blood transfusions and was discharged from hematology at 15 weeks old.
Molly Sherwood:
I think a lot of pediatricians, which is normal, expect in a normal anemic child, a child who's anemic for other reasons, once their bili is looking good and all the labs are trending in the correct direction, they are good to go. And usually that happens before you even discharge them from the hospital. So hemolytic anemia is really different in this way. And I'm so glad that you guys could monitor that because who would've thought that she would look great at birth? Well of course some people would've thought, but very few-
Bethany Weathersby:
Oh yeah-
Molly Sherwood:
That she would look great at birth and then later need that intervention.
Bethany Weathersby:
Right? That's a really common thing that is missed is that these babies look great after birth but are at risk for delayed onset anemia weeks later. So follow up care is super important.
Molly Sherwood:
Definitely. So we started off talking about your really lifelong dream of a large family, hopefully five children. And you had this experience of this healing rainbow birth. Was that enough for you or did you feel like you needed to continue in pursuit of that dream and did you feel ready?
Bethany Weathersby:
I did think I would love to have one more. I would love to have four kids that our expectations had been just totally shifted with this diagnosis and the loss of our daughter. So even just having Nora, having three kids felt miraculous. Honestly, this is just beautiful. We loved it, but we did think, "I wonder if we could do it again. I mean, we had such success with a great doctor and these treatments that I wonder if it was possible to have another healthy baby." So it was kind of in the back of our minds. And we did pray about it a lot, but we did not think that we would actually have five kids that was kind of off the table it felt like at the time.
Molly Sherwood:
Did family and friends have an opinion about what you should or shouldn't do?
Bethany Weathersby:
Oh yes. There are a lot of strong opinions. It seems there are a lot of strong opinions when it comes to a woman's like fertility and people growing their family. Everyone has, not everyone, it seems like people have strong opinions about that. So yes, even after Lucy died, people told us, "You have two healthy kids, why would you ever want more now? Why would you risk anything?" Or they didn't understand our deep desire to have more kids after that because maybe they just wanted two, or maybe they just had one and thought that was... they had a full house. People have their own dreams for their own family, and a lot of people did not understand why we would risk losing another baby to have more. But for us it was just like a need, a deep desire and need. So yeah, they thought, "Okay, you had your girl, you have three kids, you should definitely be done now."
But we prayed about it and again, discussed a lot and talked about options with Dr. Moise. And I did think I would really love to give Nora a living sister that was kind of like... and now she was four and a half years younger than her closest sibling. And so it just felt like a big gap. The two boys were best friends and then she felt just kind of alone down there. And I thought she needs a close sibling. So I talked to Dr. Moise and he said he thought maybe we could have success again. And I also said, "Is there anyone closer that you could recommend? 11 hours away is really hard to navigate." And he said, there was one doctor, Dr. Tom Trevett in Atlanta, so that was closer to a four hour drive, which is much better. And so he recommended him and we decided to set up a preconception appointment with Dr. Trevett.
And we still hadn't decided for sure if we would try for another baby, but we wanted to see if this could maybe be our new MFM. And so we had that preconception appointment with him and I went in with pages of questions. He was so patient, he just sat and answered every single question. He didn't rush me. He agreed with the protocol, the same protocol we had with Nora. And he was very similar to Dr. Moise where he just respected me and it felt like a partnership. And he was also very upfront, like, "You know the risks, and I can't promise you a living baby," but he did think that we could have success again with a future pregnancy using the same protocol. So we left that appointment really confident in the plan to try for another baby. And we were just so thankful for Dr. Trevett.
Molly Sherwood:
And so you did try?
Bethany Weathersby:
We did. Yeah. And it's crazy because we struggled with Nora to get pregnant and this baby, I think the second month of trying, we got pregnant and it was just so nice to have the plan ready. We contacted Dr. Trevett, we got in right away. We started the process of insurance approval for the plasmapheresis and IVIG. And it was just so smooth, I guess, compared to previous pregnancies-
Molly Sherwood:
Which is crazy to say because it was still incredibly intense and I'm sure pulled you in every direction, every day of your pregnancy while you were also raising three children.
Bethany Weathersby:
Oh yes. It was intense and it was hard. Again, we had to really understand that this baby might not survive. There's a really good chance that the baby would not survive. And also really quick, before we got pregnant, we discussed it with our two oldest boys. Nora was just one, so she didn't know anything but the two big boys, we discussed it with them and said, "We are thinking about maybe trying for another baby. What are your thoughts on that? Because this baby could die, Lucy." They were really deeply affected by the loss of their baby sister. And so we wanted their input because it involved them and we explained, "Mommy would... if this happened, mommy would be gone a lot of the time. She will be throwing up. She will be sick. She won't be able to play with you. She will be in another city a lot of the time and the baby could die, but we want to know your thoughts." And they both said, "Please try it. We want you to do we want another baby. Yes, we're on board." They were completely ready for it.
Molly Sherwood:
That's amazing that they could make that conscious sacrifice. How old were they then?
Bethany Weathersby:
I think five and seven.
Molly Sherwood:
Wow. You must be doing something right to raise children who can have that type of awareness and be willing to sacrifice something that's very special to kids at that age, which is time with their mom.
Bethany Weathersby:
Yeah. Right? Well, they had just seen it with Nora. They saw it play out with Nora and then they were obsessed with her. They loved her. I mean, they still do, but I think she's a little bit more annoying now to them. But they just loved having the baby sister and they saw the fruit is so much bigger than the sacrifice, truly. So that was important to us. They were on board, our family was on board. We had great support. I mean, our close family who would be doing a lot of babysitting, so-
Molly Sherwood:
Sure. Yes.
Bethany Weathersby:
Which basically means my mom.
Molly Sherwood:
I can't imagine. Also, in addition to all the facets of emotionally dealing with this and the physical aspect and the fear and the cost, but also just the logistics, childcare and driving everywhere and making food still for your kids. I mean, I can't imagine having that daily mental burden of managing the pregnancy, but also all the things you had to do day to day and then still sustaining your living children at home. It's a lot.
Bethany Weathersby:
It was a lot. It was a lot. But we knew that it was temporary. That's the thing. It's temporary and then you get a lifetime with this child. And so yeah, it was hard to coordinate. We had to work really hard on that because our doctor was four hours away and we didn't relocate that time. I just drove, I'd drive, I'd get up early before the sun came up, drive to my appointment, and then drive back that evening and usually be home for dinner.
Molly Sherwood:
That's amazing.
Bethany Weathersby:
And so yeah, the weekly scan started at 14 weeks with this baby. Dr. Trevett was super proactive with the treatments. And also one thing that really helped was having my IVIG nurse come and give me the treatments at home. That was so helpful. So it's like an eight hour infusion every week, but when you're just at home and on your couch and the kids are playing around, it was so much easier.
Molly Sherwood:
How do you coordinate that, by the way? I want to know how you can arrange to have-
Bethany Weathersby:
Yes-
Molly Sherwood:
A nurse.
Bethany Weathersby:
Somehow the MFM set it up. I don't know. I didn't call the... I didn't do it. It was the MFM contacts, the home care nurse company, I guess, so-
Molly Sherwood:
Okay. So maybe something that somebody could ask for at their doctors.
Bethany Weathersby:
Yes, absolutely. That's, yeah... My advice for anyone having IVIG treatments is to ask if home care infusions are a possibility. So I wanted to give Nora sister, but it was a cal positive boy instead.
Molly Sherwood:
Of course-
Bethany Weathersby:
We did, like I mentioned before, we did the cell-free fetal DNA test at 14 weeks instead of the amniocentesis. It was wonderful. Dr. Trevett handled it all. And that was also new to him. He had not really heard of that test and a lot of MFMs have not. And so I brought him the info on that. I gave him the study showing the safety and efficacy of the test. I gave him the shipping information and the website of the lab in the Netherlands. And he looked into it, and again, he spoke with Dr. Moise, talked it over and decided that he felt like it was a safe option.
And now that's the option he uses with all of his patients to find out baby's antigen status. So we did that and found out baby was cal positive, which was pretty devastating. But I still felt safe knowing we were in such good hands and we had a great treatment plan set up. So we were still wondering when this baby would need his first IUT since Lucy had been affected so early. And then Nora had hers at 24 weeks and he did not need his first IUT until 28 weeks, which was such a comfort, just like, wow. I mean, 28 weeks. It was great.
So he had three IUTs and we went in for the fourth IUT and it was really strange but a hurricane hit Atlanta. This was in 2017, and it was like the day before the IUT, this hurricane arrived, knocked out power. There were limbs down on power lines and streets were closed. And so they had to delay the IUT because they had trouble getting the donor blood. And that, I've seen this happen to several women, is that these factors that are out of their control, like an ice storm or whatever, not finding donor blood that matches can sometimes delay an IUT. And that's really scary. So that delayed his IUT by two days. And when I went in have that IUT, Dr. Trevett noticed that his heart rate was really plummeting and he seemed to be going into distress.
And so I was 34 weeks and Dr. Trevett decided that he would not do an IUT on a baby who was already in distress. And so he decided to do an emergency C-section right then. And that was the one IUT I ever went to without a partner with me, like a family member-
Molly Sherwood:
Wow.
Bethany Weathersby:
Because Josh was working.
Molly Sherwood:
What was that like? That's a fear that many women with any pregnancy condition or no pregnancy condition have. Wow.
Bethany Weathersby:
Yeah. I just did not expect to deliver a baby that day because I'd had all of these now successful IUTs behind me and I expected it to go like the others had gone and I just really regretted not bringing someone with me. So I did call Josh and say, "Get over here as quickly as possible." And he did. But he was a four hour drive away. So I did have to go in alone. But I did feel this close presence of God with me. And I was really mostly focused on having a living, breathing baby. So while they were putting in the spinal block for the C-section, and also I'd never had a C-section before, so that was kind of scary, but they were holding a stethoscope on, I don't know if it was,...
Anyway, they were trying to monitor the baby's heartbeat as I was bent over having the spinal, because that's how scared they were that his heart was going to stop, I think. So they wouldn't even stop monitoring for that quick spinal block to be placed. And that's when I realized, "Oh, this is pretty urgent. We need to get him out now." So they rushed me back there and I was really sad that Josh wouldn't be there to see his baby born or to take pictures. I was so sad. Like, "Oh my gosh, he's not going to be here. And then he is going to miss the documenting of the birth." And so one of the nurses said, "Give me your phone. I'm just going to be in there just to take pictures for you." And so that was really sweet.
Molly Sherwood:
That's wonderful.
Bethany Weathersby:
Yeah. And so she took all these pictures and the nurses were really kind and I was just waiting to hear the baby's cry, that I was really focused on that. And it was kind of scary to be alone. But I felt really calm also. I felt really at peace and I was excited to meet my son. So he was born, he was, for a 34-weeker, he was huge. He was six pounds and six ounces.
Molly Sherwood:
Wow.
Bethany Weathersby:
Yeah. I tend to have large babies-
Molly Sherwood:
It was pretty hard-
Bethany Weathersby:
And he did cry. I was so happy. And they brought him over to me. But he did need some help with breathing. So they put him on a CPAP for breathing assistance and he was very anemic. His hematocrit was, I think 17 or 18. He-
Molly Sherwood:
Wow.
Bethany Weathersby:
Yeah.
Molly Sherwood:
Which shows what a difference, just that two day delay made-
Bethany Weathersby:
Right. Isn't that crazy?
Molly Sherwood:
Yeah. It's crazy. Yes.
Bethany Weathersby:
Two days, a two day wait. And that was too much for him. And that shows how carefully doctors really need to time these IUTs and manage that. And that's why the experience is so important when a doctor is doing IUTs. So yes, he was really anemic. They gave him a blood transfusion right away. He had had very high bilirubin, so they put him under the full phototherapy lights and they started him on an IVIG infusion. And that is used to prevent an exchange transfusion when babies have really high bilirubin.
And so they provided great care at this hospital and they were again, proactive with the treatment in managing the bilirubin and the anemia. And I sent Josh a text of his son as he was driving. He saw his son for the first time. Maybe I shouldn't have done that.
Molly Sherwood:
How did he react to not being able to make it?
Bethany Weathersby:
He just wanted a healthy living baby. Honestly, that was it. I mean, we were just ecstatic that he was alive and safe. You know-
Molly Sherwood:
Funny how your perspective had changed by then.
Bethany Weathersby:
Yeah, that's true-
Molly Sherwood:
With a normal pregnancy. That would be a devastating moment.
Bethany Weathersby:
Right. Yeah-
Molly Sherwood:
But you are so glad.
Bethany Weathersby:
Yeah, we were so happy. It was sad. I remember after the C-section, they took me back to recovery and our son, we named him Callum Joseph Thomas. And his two middle names are after Dr. Moise and Dr. Trevett. So Dr. Moise's middle name is Joseph and Dr. Trevett's name is Thomas. And so his name is Callum Joseph Thomas. Because those doctors had have had such an incredible impact on our family and they're great men. I'm like, "If my son grew up to be like Dr. Trevett or Dr. Moise, that's everything I want."
Molly Sherwood:
Wow.
Bethany Weathersby:
They're wonderful men. And you can just see when an impact these different sets of MFMs have had on my life. Right?
Molly Sherwood:
Yeah.
Bethany Weathersby:
A good MFM can mean everything to you. At least it did to us. I'm rambling. But anyway, so Callum-
Molly Sherwood:
No, that's important-
Bethany Weathersby:
Callum was whisked off to the NICU and I was taken to recovery after the C-section. And that was a hard moment because I was just alone. I was in there alone. And all these other women I could hear wearing the recovery with their babies and their partners. So I did have a little breakdown then because it is hard to give birth and not have your baby, especially after you've lost a baby. But he received great care and Josh arrived a few hours later and got to go see him in the NICU. And we were just so happy to have a healthy boy. And Callum was in the NICU for I think almost, I think 20 days. And then he got to come home after that.
Molly Sherwood:
And what post-birth care did he need?
Bethany Weathersby:
Yes, again, he needed the weekly follow-up blood checks with a pediatric hematologist. And after NICU discharge, he still needed two more blood transfusions after that. So-
Molly Sherwood:
That was back at home though?
Bethany Weathersby:
Yes. So yeah, that was back in Alabama. So we thought we were done after Cal. We were like this, "I'm not going through that again." And we were so happy to have four kids, four living kids. We felt really full. But we did pray. We prayed, "God, if this is our last baby, give us peace about being done and give us a hundred percent feeling of being sure that we're done. And so we didn't really have that. It was just kind of like, "I don't know, we're not sure."
Molly Sherwood:
And it just didn't quite come.
Bethany Weathersby:
Right. And then another thing that often came to mind, after Lucy died, my mom told me, "I'm praying that God will give you as many babies as you want." And I remember thinking, "That is a ridiculous prayer. Why would you pray that? That's just so far off from what's even possible." And she would tell me again and again, "Well, I'm praying," because I would talk about just wanting one living baby after that. And she'd say, "Well, I'm praying that God will give you as many babies as you want."
And so that kind of stayed in the very back of my mind, "What if that was still a possibility that I did... we did feel like we got to complete our family?" And I appreciate that so much from her having the confidence to not say, "This is going to happen," but just to say, "I'm praying for this."
Molly Sherwood:
And not to say, "Just one more, maybe you need this," but just to say, "I hope that you get what you desire."
Bethany Weathersby:
Yes.
Molly Sherwood:
Whatever that is.
Bethany Weathersby:
Exactly. And that also confirmed, not confirmed, but kind of supported our decision in deciding what that number was. So we just kind of stayed open to the idea of one more. But I really did not want to go through the pain and fear of another one of those just intervention filled pregnancies. So plus I was getting older. I was in my late thirties. And so this was the deciding factor for us.
We saw that this trial was open for women with this disease and women in the trial had the possibility of a pregnancy without the need for IUTs. And so I really researched that trial a lot and discussed it at length with Dr. Trevett... I mean, sorry, I discussed it at length with Dr. Moise and really researched if that was maybe a possibility for me. And just the idea of being able to complete our family and then also have an IUT free pregnancy was incredible. So we looked into that. It seemed like maybe that would be a good choice for us. And then I also talked to Dr. Trevett who was my MFM, and I just said, "Well what do you think about this? And then also, if something doesn't work out with a trial, would you be on board with another one of these pregnancies and how do you think it would go?"
And he was totally open again about the possibility of something could always go wrong, but he did think that the treatments could work again. And he said, "I'm always available." He also was so great at letting me decide if that was a decision that Josh and I wanted to make. He didn't say, "I think you should stop having kids because it's so high risk." He said, "I'm here for you if you ever want to do this again." He said that after Callum was born. And so I appreciate all of the people who gave us that confidence to make decisions for ourself, for our own families and growing our family.
So we decided after a lot of prayer to try for one last baby and hopefully participate in this trial and have an intervention free pregnancy. And again, we did ask our children before getting pregnant, "Would you guys be on board with this because it's going to take a lot from you. You will have to contribute to this baby's survival. You will all have to sacrifice and you could lose another younger sibling." And so they were all on board. The oldest did say, "I think this should be the last."
Molly Sherwood:
He just thought he'd go ahead and cast his vote this time-
Bethany Weathersby:
He was just like, "I'm on board, but I think this is enough after this." So I was like, okay.
Molly Sherwood:
And by the way, on that note, have any of them talked about wanting a large family of their own now?
Bethany Weathersby:
Yeah, the second oldest, Asher has said it would be fun to have eight kids.
Molly Sherwood:
Wow. Okay buddy.
Bethany Weathersby:
Yeah. Well then when he was super irritated with his younger sibling, I was like, "Hey, it's like this, but more irritating at times." I mean it's hard and it's a lot of work because I would be like, "Do you want to go change your baby brother's diaper?" And he'd be like, "No." So yeah, I just reminded him that yeah, it's awesome, but it's a ton of work and sacrifice. So he has lowered that number now, but everyone was on board and so we got pregnant again. We did have some early miscarriages leading up to getting pregnant with our youngest, but those had nothing to do with the condition. And I know that the older you are, the higher your risk for first trimester miscarriages. So we got pregnant, so that was pregnancy number 10. And it ended up that I didn't actually qualify for the trial. So I was really glad that we had the backup treatment plan set up and ready to go. So we did the same protocol as before and it worked beautifully even though it was hard, it was painful and really inconvenient.
Molly Sherwood:
On that note, you saying that reminded me, so sometimes you do information sessions where you talk with other women about certain treatment options or whatever, just various aspects of this disease. And you and I were sitting in on one and last night actually, and you said that, "I don't think I'll ever forget this moment even though this moment is only one evening old for me." So I'll let you know later. But you said that it is a unique experience and a privilege to be in a situation where you can truly bear pain instead of your child. And every parent would love to do that at any time given the chance. If I see my child embarrassed on the playground, I wish that were me.
Bethany Weathersby:
Right? Yeah. I remember feeling with Lucy, I wanted to take it from her. If I could, I would've died in her place without a second thought. And yet I felt powerless. I couldn't do anything to protect her. And so with my three youngest, I felt like it was a privilege to be able to suffer in their place. The side effects of IVIG are terrible. It felt like I had the flu for months, but I was so thankful that I got to take the pain instead of my baby. And I got to protect them kind of with my own body. And so many women never get the chance or don't have the opportunity to do that, to be able to protect their child from danger by suffering themselves. And I did get to do that. And so I was so thankful for that and that did help, that mentality helped me get through the pain and the sickness.
Molly Sherwood:
That's so true and such a humbling and empowering thought and I just don't think I'll ever forget it-
Bethany Weathersby:
Yeah.
Molly Sherwood:
So with August then-
Bethany Weathersby:
Mm-hmm-
Molly Sherwood:
How was that pregnancy course?
Bethany Weathersby:
Yeah, so we follow the same protocol and he had his first IUT at 25 weeks and he ended up needing seven IUTs. So that was a lot. It was a lot. And that was during the pandemic. We did not plan for a pandemic with that pregnancy. My husband and I would just look at each other and laugh and be like, "What is happening?" Because we thought we had, I mean we probably planned that pregnancy for a whole year. Not even kidding, looking into the trial coordinating because we had these four kids at home. "How are we going to do this? How are we going to afford it?" Just meticulous planning. And then COVID hit and there... I was just like, "Okay, we don't really have control over that much in our lives actually."
So we were just so thankful to get through those procedures. The seven IUTs, Dr. Trevett was wonderful. And baby August had his last IUT at, oh, I forgot to say it was another boy. And also cal positive, just-
Molly Sherwood:
Of course, wouldn't that be the case?
Bethany Weathersby:
Right? So my husband is heterozygous, but every baby has been cal positive, so I don't know what's happening there. So he had his last... August, had his last IUT at 35 weeks and was born at 37 weeks and one day. And we named him August because he was due in September. And we didn't know if he would make it even to viability. And so we had been praying that God would help him make it to at least August. He was due in September and our prayer was, "Please let him make it to August. That would be the ultimate goal." And he was born August 24th. So it's just a sweet kind of, I guess, praise, that he made it to August alive and his middle name is Judah, which means praise.
Molly Sherwood:
I love that.
Bethany Weathersby:
So August Judah, and he's now one year, one year old. And again, we follow the same follow up protocol after discharge from the hospital. Also, he did not need any NICU time. He was great. So-
Molly Sherwood:
Do you think Callum's NICU time was largely due to his prematurity?
Bethany Weathersby:
Well, I did want to say so with Nora and with August we had, I was given a medication called phenobarbital for 10 days leading up to the birth. And that helps develop the baby's liver so that the baby can handle the bilirubin better after birth. And so with Callum, we didn't know he was going to be born at 34 weeks, so we didn't have time to do the phenobarbital with him. And then also he had the prematurity. So that's why Callum needed a lot more intervention and struggled with high bilirubin and August and Nora did not really struggle with high bilirubin.
August needed a couple days under phototherapy lights, but his never really got that high actually. So the phenobarbital really made a difference in their treatment after birth. So August was, again, he was born not anemic at all. And then he was discharged in my arms when I was discharged from the hospital after birth. And we got to have our five living children. And August did have, he ended up having three transfusions between four weeks and eight weeks old. So again, that follow up weekly blood testing at the pediatric hematologist was so important for us. And now they're all healthy and we are completely done. And we did get to have all the babies that we wanted to complete our family. So-
Molly Sherwood:
That's amazing. I'm sure-
Bethany Weathersby:
Yeah.
Molly Sherwood:
I'm sure you could not have fathomed this day on the day that you delivered Lucy.
Bethany Weathersby:
Never. Never in my wildest dreams, ever. And I have to say I'm, again, I'm so thankful for our MFMs and also the amazing nurses, ultrasound techs, OBs, I mean so many people. The pediatrician, the hematologist, my home care nurse who came week after week to my dirty house gave me the IVIG surrounded by children. Just so many people contributed to these babies being here and I appreciate every one of them.
Molly Sherwood:
And now you contribute to other people's babies being here.
Bethany Weathersby:
Yes. Yeah.
Molly Sherwood:
Can we talk about that for a little bit? I want to figure out your journey in how you became an advocate for so many other women. So you started a blog, but what was your intention with the blog?
Bethany Weathersby:
Right. So that I never thought like, "Oh, I want to be a blogger." That was never a plan or a desire. But after Lucy died, we had to explain this complex condition to so many people and it was really hard to understand. I mean, it's just a weird disease and it's like, "What? Your blood? What does that have to do with anything?" Or Josh's blood, "What does Josh's blood have to do with the baby's safety in utero?" So I decided to start a blog so I could put all of the medical information in one place and then I could send people to the blog to learn more so I could just explain it in depth once on my blog. And then also kind of chronicle our journey because we did know we wanted more kids and we were determined to pursue that. So I thought it would be a great way to just chronicle our story.
And then also we wanted people praying for us. We needed support and prayers. And then also I did want to encourage other people. I didn't know. I didn't how it would turn out. I mean, the blog is called Losing Lucy and Finding Hope. And I remember coming up with that name thinking, "Well, I definitely don't have hope right now. Yeah, that's the farthest thing from what I have right now."
Molly Sherwood:
Yeah. Wow.
Bethany Weathersby:
But I thought maybe one day I would be there. And I wanted to chronicle all of it too. So that's how it started. And women just started reaching out who are reading the blog in order to learn about the disease. Other women with this disease were reading it. And I was blown away by that.
Molly Sherwood:
So I remember being in those women's shoes because you talked about when you were first diagnosed too, and the doctor, when they first told you didn't really know what to say. So naturally you go home and just turn over every stone you can on the computer and there's not too much out there, especially before the foundation came to be, but your blog came up.
Bethany Weathersby:
That's crazy because you don't even have anti-cal.
Molly Sherwood:
No, I don't even know how it came up. You must have some great search engine optimization.
Bethany Weathersby:
I don't know. That's amazing.
Molly Sherwood:
Yeah, I know. And so you just had women starting to contact you and ask you... so I didn't contact you because I was kind of too busy fan-girling over you. I was like, "Oh no, I can't bother Bethany with my questions." But I know women did and that just grew and grew. What happened with that?
Bethany Weathersby:
So more and more women reached out and I would just answer their questions, especially as I went through my own pregnancies and found this successful treatment, I felt really, not really burdened, but driven to share that with others and especially women who had been given no hope. And so I just remember how I felt at that point. I felt alone. I felt terrified and didn't know who could help me. And so I wanted to be a helpful person to those people. I wanted them not to be where I had been, and I didn't want them to feel alone. And so I also, again, had seen what this with the right treatment and experienced doctors can do for these babies. And so I wanted everyone to have the outcome that I did with Nora and Callum and August. So I would just answer the questions and empower, hopefully empower them to advocate for the right care.
Molly Sherwood:
But it did keep growing. Right? I mean-
Bethany Weathersby:
Yeah. It did-
Molly Sherwood:
I wonder how many... Well, okay, fast forward to today. Maybe how many women are you just supporting and engaging with, I don't know, weekly? Or what would you say?
Bethany Weathersby:
Yeah, I don't know. I mean, there's always women that I'm just kind of walking through their pregnancies with them, a steady stream since I started the blog and I don't know a number, I really don't, but it's every single day. Every single day I chat with women and I want to hear their MOM scores and what the plan is, and they ask me whatever questions they have. And it's an honor to be able to help them. And also it's, I feel honored that they share this really intimate part of their lives with me.
Molly Sherwood:
Yeah-
Bethany Weathersby:
It's really, really sweet. And I feel privileged to be able to do that. But I also, as I saw these women streaming through pregnancy after pregnancy from all over the world, I realized we've got to get something bigger to help on a bigger scale because I'm not doing enough. I'm just one person. I can't do, I can't it all and I'm not enough. And even Dr. Moise, he's one person. And so that's what kind of led to the start of the Allo Hope Foundation.
Molly Sherwood:
Yeah. Let's talk about that next. How did you decide to do that? I mean, I'm the decision you and Josh kind of had to make together.
Bethany Weathersby:
Yes. I mean, for years I had said to him, "We've got to get some kind of platform or group or organization together, but I don't know how to do it. I don't have any background in business or anything like that. My degrees are in education, elementary education. So I was-
Molly Sherwood:
And it does show when you-
Bethany Weathersby:
Oh, you think?
Molly Sherwood:
Yes, it really does show when you describe things to people and just share, it really shows that you're a good communicator and educator.
Bethany Weathersby:
Oh, that's nice. Yeah. I guess that does help. But I guess I was really scared to just take that step and start an organization. So Dr. Moise actually was really encouraging when I mentioned it, I was brave enough finally to mention it to him. I just told him I would love to start a non-profit organization and he really encouraged me to do that. He saw the need and there was no other non-profit organization for this purpose. And he said, "I would love to help in any way. I think you should do it." And he also said, "I do all things all the time that I don't know what I'm doing." He's like, "I built this thing in my backyard and I don't know what I'm doing, but I just learned along the way and that's how you grow as a human." So he was really encouraging during that process.
Molly Sherwood:
And so where is the foundation now? What are you up to?
Bethany Weathersby:
Yeah, so yeah, so it was officially formed in 2019 and Dr. Moise is on our medical advisory board. And it's growing, it's thriving and it's so wonderful to be able to provide support for patients on a larger scale, to provide resources. We have a great website with so much to offer patients, and we have a support group on Facebook with over a thousand women with red cell antibodies. And it's a great place to ask questions, discuss your pregnancies, and just read about other womens experiences.
Molly Sherwood:
It is so valuable because I think we touched on it, but just the feeling of isolation you can feel when you're experiencing something that other people don't understand. And even if you do try to explain it to them, you feel like you kind of have to convince them why it's important kind thing.
Bethany Weathersby:
Right. Right.
Molly Sherwood:
Because they wouldn't-
Bethany Weathersby:
Right.
Molly Sherwood:
You wouldn't intuitively understand the gravity of it, hearing it for the first time, maybe from somebody.
Bethany Weathersby:
Right-
Molly Sherwood:
And it has been so amazing listening to your experience. Thank you so much again for sharing, Bethany.
Bethany Weathersby:
I'm always thankful when I get to share about Lucy and her siblings, and Molly, you are such an empathetic listener and interviewer, so thank you for that.
Molly Sherwood:
If you, your partner or someone close to you, has antibodies in their pregnancy, we are here for you. We have a great resource library on our website at allohopefoundation.org. That's Allo spelled, A L L O, hopefoundation.org. Thanks for listening. The ALLO podcast is a production of the Allo Hope Foundation. It was researched and written by Bethany Weathersby and me, Molly Sherwood. It is produced and edited by CJ Housh and Eric Hurst of Media Club. The Allo podcast is sponsored by Janssen Pharmaceutical Companies of Johnson and Johnson.