Host and Allo Hope Foundation founder Bethany Weathersby tells the story of Lucy, her daughter, who passed from HDFN. Her loss sparked the blog Losing Lucy and Finding Hope, which grew into a resource for alloimmunized mothers seeking help and support. Lucy’s loss gave Bethany the drive to advocate for alloimmunized moms and HDFN babies around the world, and to advocate for the lives of her future children (more on that in Part 2). Lucy’s life has continued to impact the lives of countless babies with HDFN.
Host and Allo Hope Foundation founder Bethany Weathersby tells the story of Lucy, her daughter, who passed from HDFN. Her loss sparked the blog Losing Lucy and Finding Hope, which grew into a resource for alloimmunized mothers seeking help and support. Lucy’s loss gave Bethany the drive to advocate for alloimmunized moms and HDFN babies around the world, and to advocate for the lives of her future children (more on that in Part 2). Lucy’s life has continued to impact the lives of countless babies with HDFN.
Note that since the time of this recording, Allo Hope Foundation has changed its recommendation such that a critical titer for Kell is any titer (previously 4), consistent with the ACOG Practice Bulletin, available here: https://pubmed.ncbi.nlm.nih.gov/29470342/
Episode themes:
Terminology used in this episode:
Allo Hope Terminology Library https://allohopefoundation.org/library/terminology/
Links in this episode:
https://losinglucyandfindinghope.com/
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
Bethany Weathersby:
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.
Molly Sherwood:
Welcome to the Allo Podcast by the Allo Hope Foundation. I'm Molly Sherwood.
Bethany Weathersby:
And I'm Bethany Weathersby.
Molly Sherwood:
And I'm honored to be teeing us up for this super special interview. If you had told me five years ago that I would be interviewing you about this amazing story, I would never believe you. It is a treasure to talk about this and have this story memorialized in this way for other people to hear. So we've covered my story, and today we're going to talk about your story.
Bethany Weathersby:
Right. And it's probably more of a novel than a story. It's so long, there's so many pregnancies.
Molly Sherwood:
I know it is so, so long. So we had to break it into two.
Bethany Weathersby:
That's right.
Molly Sherwood:
But honestly, they are so just engaging and important and really jam packed with just so much that happened. And I'm sure this is true with so many of our listeners, but when I found out about my Alloimmunization at the time, which was like 2018, your blog, because the foundation wasn't around then, it was one of the only resources that I could find. Certainly probably one of the only accessible resources to a woman like myself who's just looking for something like some sort of source of comfort. And I don't know, it's like a connection that I think a lot of women have come to have with your story because of the way you've always shared it so openly. And so being able to share it in this way with you is super special.
Bethany Weathersby:
I am so excited and happy to share. I remember throughout my pregnancies how meaningful other women's stories were to me and how helpful they were, especially when women were courageous enough to be vulnerable and open with the reality of this disease and what these pregnancies can look like. So I'm really hopeful that others can learn from my story too.
Molly Sherwood:
Yeah, I mean, this is hard stuff. We're going to be talking about loss. We're going to be talking about that kind of devastation, but also your story becomes so triumphant and I want people to hear the whole thing. So I'm really happy that we can do this. And we're going to talk about some themes that I think will come up a lot today, our talking about high titers, severe disease. We'll talk a lot about your doctor-patient relationships and also how you've become such a strong advocate for women too, and what it means now in your day-to-day life and in others day-to-day life, understanding your story to their own education and benefit. So we know that Bethany is the founder and executive director of the Foundation, but you also are a mother to five living children.
Bethany Weathersby:
Yes.
Molly Sherwood:
Something that a friend brought up to me once who had experienced a loss is the thoughts that go through their mind when somebody asks you, how many kids do you have? Which is a totally harmless frequent question.
Bethany Weathersby:
It used to really bother me pretty soon after she died. But I pretty quickly just found my own answer that I use most of the time, which is I have five living children, or however many at the time, two or three or four. Sometimes I can just sense the situation. I don't really want to get into a chat about it. So I'll just say I have five kids, but most of the time I say I have five living children.
Molly Sherwood:
Let's talk about all of the children today. So I know you were first diagnosed with antibodies in your third pregnancy, so let's go back to your first two pregnancies. What did that look like?
Bethany Weathersby:
So those were pretty textbook pregnancies. They were born two years apart, two healthy boys, both born at 41 weeks. No major complications or anything. I think with my second son, I had two ultrasounds throughout the entire pregnancy and I just was very, very blessed to have that, I guess, "normal" experience with those pregnancies. And I naively expected that to happen with my third as well. I thought that that's how it would go and it didn't.
Molly Sherwood:
How did it go? Let's talk about how you found out.
Bethany Weathersby:
Yeah, so everything was just the same. You go in, I went in around six weeks for the prenatal blood work, which I didn't even know what that really was. I just knew that it's something that we did. I didn't even know what they were testing for. So went in for that, didn't hear anything back. And then we went in at nine weeks for the first ultrasound, which is a big deal. There's always that fear that there won't be a heartbeat or the pregnancy isn't progressing as it should. So there were some nerves there. We were a little bit anxious, but my husband Josh and I went in and we saw this beautiful baby on the ultrasound and the baby measured on target, I think to the exact day and had a really strong heartbeat. And the ultrasound tag was like, the baby's great.
Bethany Weathersby:
You could see the baby moving and little stubby arms and legs kind of kicking around. So it was just this immediate sense of relief. Okay, there's just one. The baby looks healthy. And my husband was in grad school at the time, so he had to run, he had to go to class. And we felt fine about that since we had just seen a healthy baby. So my husband went to class and then I went to meet with my OB just to chat, I guess. And so that's when my OB walked in the room and had this very concerned look on his face. And I was confused because I thought, well, did he not know that I just had this great ultrasound with a healthy baby? And he said, there's something wrong with your blood work. And I was thinking, what blood work? I didn't do any blood work today, but he was talking about the first trimester blood work I'd done it six weeks.
Bethany Weathersby:
And he was gravely concerned and it was obvious, but I could not wrap my mind around that. We just saw a healthy baby. You guys told me the baby looked great and now you're saying you're really concerned about something with the blood work. What does that have to do with anything?
Molly Sherwood:
Right.
Bethany Weathersby:
Yeah. So he told me I tested positive for Anti-Kell antibodies, never heard of it, didn't even know they were testing me for it. And he tried to explain what that was, and he seemed a little bit confused himself. He said I was his first patient in all of his time practicing to test positive for Anti-Kell antibodies. So I just didn't really understand, he said you're going to have an amniocentesis every week throughout your pregnancy, which that made me nervous. And he said, you'll probably have to deliver early. So it was just this big weight of fear and confusion. And I even tried to take notes, but it just didn't make sense. So I just knew that he was scared for my baby. And so that made me scared for my baby. So I left just really, really terrified.
Molly Sherwood:
And so how did he send you off? Did he just say, this is terrible, we're going to have to figure it out? Or did he propose a plan or did you leave continuing in your confusion?
Bethany Weathersby:
Well, he did say, we will refer you to this large teaching hospital that's about an hour away and you will see a high risk pregnancy specialist and MFM, Maternal Fetal Medicine specialist. And he was very reassuring about them. They would handle it all and it's a great hospital. So that did give me some comfort. But that was the only plan that he mentioned. So it was kind of like, wait and we'll contact you and get you an appointment with them.
Molly Sherwood:
And so how was that waiting, going home and waiting?
Bethany Weathersby:
It was terrible. Well, I just went home and then I had to explain to my husband and my parents what was going on and I couldn't even understand it, so how could I possibly explain it? And I just remember going to pick... My boys at the time were one and three, and so I went to pick them up. My mom was keeping them, and I remember just seeing them playing in the front yard and tumbling around and the sun was shining and their blonde hair was glittering in the sun. And I just remember thinking, how could I handle something happening to my child? Just for the first time ever in my life, feeling that fear of something could happen to my child and then not understanding how heavy that risk was. And so just standing there, oh, this is horrible, just the weight.
Bethany Weathersby:
And that weight stayed with me until now. So that was in 2012. And so just Googling, trying to research it, I didn't even know what it was called. I'm like, what am I googling? I don't even have a name for this, so I could not find much information on it. I did discover that the titer shows that antibody level in the mother and that can help you understand how much risk your baby could be in. So I remember calling my OB back a couple days later and saying, oh, by the way, did you get a titer and what is it? And he said, well, it's 1,024, so the situation is dire. And that was just horrifying because that's well over the critical level. At the time, the critical titer for Kell was eight. So anything eight or above could possibly affect your baby. So 1,024 is just pretty mind blowing.
Molly Sherwood:
It's astronomical. And now I think now the critical titer for Kell is accepted to be four, or even in some cases two, or really any titer at all for Kell.
Bethany Weathersby:
Yes. Yeah, that antibody specifically can actually affect babies at any level. Yeah. And then the doctor saying it's dire was just really scary.
Molly Sherwood:
That's a really scary word. And also I'm sure saying that, but without any proposal for what to do next and how they're going to fix it, I'm sure that's terrifying. And so you waited and you had your first consultation with MFMs, and when was that and how did that go?
Bethany Weathersby:
So I think I was about 13 weeks when I had that first appointment. And I was really looking forward to it because I thought, oh, finally someone who can really inform me on what this disease means and what the treatment will look like and will have a plan to protect my baby. So I was really excited and that was the thing I was looking forward to that was giving me hope. So I got there and I remember hearing the MFM in the hallway pick up my chart off the door and flip through it. And he shouted down the hallway, hey, does anybody know what the critical titer for Kell is? And I was just like, wait, what? That was my first clue that it might not go as I had expected. And so that was unnerving. I knew what the critical titer for Kell was, and this was the person who I had hoped was going to really educate me on the disease. But he didn't know that one very basic fact.
Molly Sherwood:
So when you started that appointment, did he just say, we're going to scan you during a 16 week ultrasound, just a normal anatomy scan and make sure you're doing good kind of thing? How did that look?
Bethany Weathersby:
Yeah, I think he was just pretty laid back about it. Well, we can't ever predict what will happen, but this is your first sensitized pregnancy, which means everything should probably be fine because in general, but definitely not always, the first sensitized pregnancy is more mild. And so there was this assumption that the baby couldn't really be harmed if it's the first sensitized pregnancy. But I do remember saying, Well, yes, but my titer is 1,024, so I am pretty anxious about the baby becoming anemic. And I asked about treatments that I had read about online. I'd found this one study on treatments called plasmapheresis and IVIG. And I'd actually read online in this, I think it was, I can't remember the website. Anyway, it was like an old mom discussion forum and a couple other women had used these treatments to delay fetal anemia.
Bethany Weathersby:
And so I asked if maybe it's something we could try or look into because my titer was so high. And then I also asked when they would start MCA scans to monitor the baby for fetal anemia. So he said, oh, plasmapheresis and IVIG don't work. They're experimental and you don't need them. The baby will be fine. And we won't start MCA scans until, I think he said between 20 and 24 weeks. So he said, don't worry, we'll do an ultrasound at 16 weeks. So I felt very uneasy about that plan.
Molly Sherwood:
And does the ultrasound, just a plain ultrasound or the one that most women expect to get at 18 to 20 weeks, does that get you the information that you needed about her, about how Lucy was doing?
Bethany Weathersby:
No, so that's what I was worried about. I knew that fetal anemia is not visible on regular ultrasound. So he tried to reassure me by saying, well, it'll be a level two in-depth ultrasound. We'll look at everyone of her organs and make sure everything is functioning well. And I just knew from what I had read online that fetal anemia is not really visible on that type of ultrasound. I really wanted an MCA doppler scan. I wanted to know how quickly my baby's blood was flowing through her middle cerebral artery because that will show how anemic the baby is if the baby is anemic. And that's what was going to set my mind at ease, just getting that one scan. So I think I was still hopeful that when I went in for the 16 week ultrasound, they would just go ahead and do that MCA scan as well.
Molly Sherwood:
And how did that go?
Bethany Weathersby:
Yeah, so I feel like the scan was an hour long. It was really long. And they were very in-depth. They looked at all of her major organs, everything looked great. She was measuring really big, and also they confirmed that it was a baby girl, which we were so excited about. Her heart looked great. There was no signs of fluid buildup, so no signs of fetal high drops or ascites in the tummy. And they just said she looked perfect. Everything was perfect. There're no signs of anemia. And so I asked if they could do the MCA scan to check her for fetal anemia, and the MFM said, no, there's no need. We just did this in-depth scan and she looks great. And I kind of had a conversation with the MFM, I was trying not to demand it obviously, because I'm not the expert.
Bethany Weathersby:
I'm just the mom who's never heard of this disease and I'm trying my best to learn about it, but I feel really uneasy walking away without that MCA scan. So I kept asking like, well, how do you know that she's not anemic? And then we would go through the whole thing of, well, we just looked at there's no high drops. And then I would ask, well, can't they be anemic without high drops? Aren't they anemic before the high drops is visible? Yes, but there's no need to start at 16 weeks. She's fine. It's your first sensitized pregnancy. And it was just this inward battle.
Bethany Weathersby:
I remember just laying there and thinking, what else can I say to get them to do this five minute ultrasound that would really give us a picture of how my daughter is actually doing? And I couldn't make them do it. I guess now, if I could go back in time, I would not leave that ultrasound room without that scan. But I didn't know, I just thought, well, maybe I'm overreacting. I asked her three or four times, I did my best and so I left not knowing.
Molly Sherwood:
And I think that powerlessness is something that I know you've experienced. I've experienced, and we both see it all the time in patients who are just searching for the strength to challenge or question a practitioner, especially when there's a couple things I think that kind of feed into this. First of all, there's this phenomenon of the anxious mother. You have anxiety. You're just really nervous. You're overthinking, you're Googling, and then of course, coming in with stuff that you read on a message board. And it's really hard in rare disease and especially in obstetrics, because in all rare diseases, a patient base to do quality research is lacking. And also, especially in obstetrics, what pregnant woman wants to subject herself to a study or a test or whatever? And so there's such a lack of resources that practitioners trust. And so instead we have the patients seeking things.
Molly Sherwood:
And sometimes it is published literature and sometimes it's just case studies, case series of women like you. And it's just a really hard thing to come up against as a patient when in non-rare disease situations you always walk in and say, oh, my kid has a fever, what should we do, Doctor? What do you think it is? It's not that same dynamic. And so I think it's a struggle for everybody.
Bethany Weathersby:
Definitely. It's such a struggle. And again, most women are relatively new to the disease and so they don't feel confident in their knowledge of what should be happening. So it's this really hard feeling of I need to protect my child, but I don't know how, and I don't feel safe with this treatment plan, but I am not the expert. I am not medically trained in this field or at all, so what do I do?
Molly Sherwood:
And so yeah, in this case, you felt this uneasiness, but because you did feel like you were perpetuating this anxious mother thing and you were constantly being reassured that you're at this large teaching hospital under the best care, you ended up... What happened next? I think you went back at 18 weeks. What was next after that first scan?
Bethany Weathersby:
Yeah, so I went home and just really struggled and really prayed about what to do. Every day it was like the anxiety would just build and build and build because I had this feeling, I just had this uneasy feeling that she was being attacked by my antibodies and she was deteriorating and we were just doing nothing. And that probably a lot of that feeling was just fear of that happening, but I couldn't shake it. And I just knew that there were steps that could have been taken to monitor her closer and protect her that we were not taking. And so I did not feel okay with that. But I also felt like I had no power. So yeah, I do remember really praying, okay, at this next appointment, I remember praying like, Lord, if I'm over exaggerating and just being ridiculous, and the anxious mother, just give me a piece about following whatever they say to do whatever it is.
Bethany Weathersby:
But if not, just give me this deep understanding of what to do and give me wisdom and courage to do it. And so my next appointment was at 17 weeks and six days, and it was just another chat with the MFM. And so I asked her again, can we schedule an MCA scan because I just need to know if my baby is anemic? And then we went back and forth again... And every time I went there was a different MFM, there's like 11 rotating MFMs at this practice. So every single time I went, it was someone different. So this one also reassured me, the baby's fine. I just looked at that ultrasound report, perfection. And so I just felt deep in my heart, I'm not leaving here without this ultrasound. So I tried to be respectful and asked, please do this one scan.
Bethany Weathersby:
It takes five minutes, it's non-invasive. You have the equipment and the knowledge and ability to do it. And she refused again and again. And finally I just said, can I please speak with your superior? And so she said, okay. And went and got, I guess, he was the head MFM, I don't really know. But he came in and said, sounds like you really want this MCA scan. And he said, look, we'll just do it for you really quick to set your mind at ease and then you can go home feeling confident. And I was thrilled. I was so thankful. So he took me into the ultrasound room and I feel like there were about three MFMs in there. And then the ultrasound tech, I don't know why.
Molly Sherwood:
They were probably like, hey guys, check out this crazy lady. Yeah.
Bethany Weathersby:
I want to see the troublemaker. So I do think that they are not used to doing MCA scans before that 20 to 24 weeks. So maybe it was kind of this, I don't know, novel thing. So they did a quick scan of her and they were like, she looks perfect. And then they did the MCA scan and I was searching the screen for the PSV, which all of this I just found on the internet. I just Googled it and found, okay, look for the PSV and you can convert it to the MOM. And I saw a number and it was so high. I remember thinking, surely that's not the PSV, I'm not seeing it correctly. And so I kept searching and searching and I just kept seeing that number come up. And I was like, what? So it calculated to an OM of 2.5, which is so high.
Molly Sherwood:
That's crazy.
Bethany Weathersby:
It was the PSV, by the way.
Molly Sherwood:
And so I know we're going to end up talking about what the PSV and MOM means, but normal MOM, which means multiples of the median, which talks about how much your PSV is over what's average, the median. So one is normal, 1.5 is, oh my gosh, we need to do an intrauterine transfusion. And you had a 2.5.
Bethany Weathersby:
Yeah, 2.5 is just unheard of basically. So she was severely anemic. They kept doing the reading again and again to make sure that they were getting it right. And they were, so the room just went silent. And then they checked her abdomen really closely and were like, oh, actually there are some asci some fluid building up in her abdomen, which is the beginning of high drops, which is organ failure from severe anemia. So I was just horrified. And for some reason I was not surprised. I just felt like it was happening. And the head doctor thanked me and said thank you for pushing us to do the scan today. Because if we hadn't, she probably wouldn't have lived another day or two. That's how anemic she is.
Molly Sherwood:
And so what was the plan after that conversation?
Bethany Weathersby:
Yeah, so they said, We're just going to order the donor blood and do an intrauterine transfusion blood transfusion tomorrow. We've done one at this gestation before in the whole history of the hospital. So basically they were saying, we don't have experience performing this procedure at this gestation, but we're just going to do it. So they didn't give me much info on survival rate or anything like that. But I knew that it was not good.
Molly Sherwood:
So tell me more about the next 24 hours, knowing what you now knew, but also knowing their lack of experience in doing this. What were your feelings and your decisions that next day?
Bethany Weathersby:
It was really hard. My husband was so upset and concerned, but the general feeling was like, oh, this is the miracle. This is our miracle that we prayed for. Because I had asked God, help me know what to do, give me wisdom and save my baby and protect my baby. And so I had done the right thing in pushing for the scan. We had caught it even though it was very late and the baby was already so anemic, but we still had a chance. And so I really thought, this is miraculous that we caught it in time to treat it, but we were just really, really scared.
Bethany Weathersby:
And I think that was the first time I really knew that there was a possibility that my daughter would die. So we actually went, my parents were like go out to eat at a nice restaurant the night before and we'll keep the kids. And so we went to this Thai restaurant and we were like nauseated. We were so just overwhelmed. And so we ate a little bit and it's a great restaurant, but then we never were able to go back to that restaurant after that because it was this place of trauma for us. So we're always like, man, that ruined a really good restaurant for us.
Molly Sherwood:
And then what?
Bethany Weathersby:
So the next day we went in really, really early before the sun was even up and they did the IUT, which they put a needle through your abdomen. And I remember thinking, there are so many people in this room. I tried to count, there were about 20 medical professionals in the room. I thought, wow, this is a big operation, but just praying and praying and praying that God would protect my baby. And the doctor said they put blood into the baby's cord, which was this tiny, tiny, thing of an umbilical cord of a baby who just weighs a few ounces. So they were able to get it into the vein. And then they went in a second time and they put blood into her abdomen to be absorbed later. Apparently they injected her with something called Lasix.
Bethany Weathersby:
They said her hematocrit was six, so that's really, really low. It should be like forties, usually low forties or upper thirties. I think she was barely alive. And they said they got blood to her. It went perfectly. They said all of the stars aligned for you today. And so they were just really pleased with how it went. And only later did I realize that some pretty major mistakes were made in that procedure. You should never give a baby Lasix during that procedure. I've never ever heard of that happening before.
Molly Sherwood:
And did you ever find out why there were so many people in the room that day?
Bethany Weathersby:
It's pretty normal, because I went on to have many IUTs after that. And that's a pretty normal thing. There's a whole lot of different kind of, I don't know if disciplines is the word, but different groups, especially if you're viable, there's a NICU team waiting in case the baby has to be delivered. There's the anesthesiologist, there's the MFM's, the ultrasound tech, the nurses, it's a big team.
Molly Sherwood:
And so when you had that IUT and you're saying you're looking back on things that even happened during the IUT, like the Lasix, what else happened that should have been done differently?
Bethany Weathersby:
So if a baby has ascites or fetal high drops that fluid in the tummy there, you should not go in and put donor blood into that fluid. It will not be absorbed. It will not be absorbed, it's pointless. And sometimes it can put extra pressure on the heart. This is what I learned from some other MFMs later, but especially since they were successful in getting donor blood into her cord, they could have just left it and come back in a day or two later and given her more blood because she was starting out so low. So I know that's a hard procedure to do on a baby that's small who's so sick already. But yeah, in hindsight we know they should have just stopped after getting the blood in the cord and then checked her the next day and gone in again a day or two later to give more blood.
Molly Sherwood:
What did happen instead after you went home? After that first IUT?
Bethany Weathersby:
So before that procedure I had felt her moving on a pretty regular basis. I don't know why I can always feel my babies move or a little bit early, like 15 weeks, 16 weeks. And so after the procedure, I never felt her move again. And I really wanted an ultrasound the next day to check her to see if she'd even survived the procedure because I wasn't feeling her move. And they said, no, we'll recheck in a week and they would not check her again. And so my anxiety was just so intense thinking, does she even have a heartbeat? I don't know what to do. How can we possibly wait a whole week to see if she even survived the procedure? So it felt like torture and it was so hard to go about normal daily tasks of caring for this one in three year old, these little boys who still needed a mommy and a daddy who were present.
Bethany Weathersby:
And so that was really hard. But also, again, in that spot of what do I do as this little girl's mom? Do I keep pushing or do I trust? Do I say, okay, you're the expert, it's fine to wait a week. I didn't know. I did not know. So finally on day I think three I called the labor and delivery department and said, I can't feel movement. I have to come in and get checked. And so I drove an hour to their labor and delivery and they put the ultrasound on and I was just waiting for no heartbeat. But they found a heartbeat and they said she's fine. And so I said, I really want to have an MFM come and check her and is there any way you can do an MCA scan to check her for fetal anemia? And they said, no, she's fine.
Bethany Weathersby:
We heard a heartbeat. There were so many reassurances. And I, again, kept pushing. And so they went and found an MFM and he said, we will not do an MCA scan. She's fine, we saw a heartbeat. And I did notice on the ultrasound that she was completely still, she was not moving. So yes, she did have a heartbeat, but she was critically ill. And so I even said, she's not moving. Look, she's not moving. And then we all watched and then there's this big tiny little movement of her arm and he said, look, she's moving. She moved. So then they sent me home.
Molly Sherwood:
That's crazy. It's just wild that after your suggestion earlier had already proved to be critical that there was still this pushback.
Bethany Weathersby:
I mean, again, it was an MFM I'd never seen. So I don't know this system there of how well they are communicating together. Do you know what I mean?
Molly Sherwood:
Yes.
Bethany Weathersby:
I know that some practices just have a larger team and multiple MFMs. And then I think I do remember them saying, we have a weekly meeting where we discuss the patients and we just make decisions and things. But I don't know if he knew. I don't know.
Molly Sherwood:
Yeah, I wonder the same thing. I mean, I was seen at the only place in my state that treated the condition and they were a team of MFMs, maybe eight or nine of them. And it's the same thing. You just get who you get that day when you're scheduled for an appointment. You don't even know until the day of who the practitioner will be for you that day. And the continuity of care is really challenging. I remember there were a few times where I would have an actually productive conversation and we made a decision about treatment and I would say, hey, can you write that in my notes today in my chart? And that way the MFM can just see that next time. Do you mind looking back, remember what we said last time? Here's the proof.
Bethany Weathersby:
Yeah, that's great. That's a great tip.
Molly Sherwood:
Okay.
Bethany Weathersby:
Again, we don't know how familiar he was with my case, but yeah, I felt powerless and had to just wait till that next scan. It was about a week later, might have been eight days.
Molly Sherwood:
And so was that, I remember reading this in your blog. Was this also around Liam's birthday?
Bethany Weathersby:
Yes. So the next ultrasound was on my oldest son's birthday and he was turning four. So that was a lot. And yeah, we finally made it to that scan went in and her MOM was even higher. It was over 2.7, the high drops had spread and she had heart damage now from such severe anemia. So the IUT was not successful and she was in a way worse shape than the previous week when we'd seen her. So that was absolutely devastating because it felt like a death sentence. And I could see the MFMs just give up. They just gave up and we're like, she's extremely sick and there's nothing else we can do. And so that their decision was to just let her die.
Molly Sherwood:
Which is so unacceptable to you as her mom, her advocate, her voice.
Bethany Weathersby:
Yes, absolutely. Especially because there was a treatment option. I know that she was so sick, but you can still try everything possible to save her. And that was mind blowing to me. I could not understand if they knew that they could try another transfusion to give her blood, why wouldn't they do that? So I felt like I had to convince them of her worth as a human.
Molly Sherwood:
Wow. And do you ever feel like you did successfully communicate that to them, to this particular care team?
Bethany Weathersby:
I don't know, honestly. I mean, I met with the head doctor in his office because I said, well, I'm not good with you guys giving up. And so we had a discussion and he just looked confused. I remember this strange expression on his face, confusion about why I was just weeping. And so, I mean, I did say, you have to try everything. And so he agreed to discuss it with the team of the rest of the MFMs and they would decide if they would try another IUT. And so we had to wait for that answer.
Molly Sherwood:
And what was that like? So you knew what you wanted, you knew you wanted them to try, of course. But then the fact that they said, we're going to take this behind closed doors and decide if we want to try.
Bethany Weathersby:
Right. It was horrible. I just couldn't understand it. I guess I would think of let's say a five year old child if they had a condition and then there was a treatment, even if it's a long shot. But I mean who just gives up like that? And I remember thinking, is it because my baby's in utero and so is this baby less worthy of life? I don't know. I don't really know. So I really lost faith in doctors at that point because I had entrusted my child's life to them and I felt like they squandered it.
Molly Sherwood:
And when they took it back and they let you know what they had decided about what they were willing to take on with Lucy the next day, what did they tell you?
Bethany Weathersby:
Yeah, they said, okay, we'll try it, but she's probably going to die, and I knew that. I knew that as soon as I saw that ultrasound with how severe her anemia and high drops was. But I was really thankful that they would at least try and I appreciated that. And then we had to go home and celebrate our son's fourth birthday with him that day.
Molly Sherwood:
I remember you posted something about how you had to at the last minute swing by the grocery store and you were getting questions about what are you due? When is your baby due?
Bethany Weathersby:
Yeah, that was horrible. We went to Publix because we're like, oh my gosh, we don't have anything to celebrate with him today. Because obviously all of our focus had been on Lucy and the pregnancy. And so we stopped at Publix and got him these colorful cupcakes and I think we got him a little present, I don't remember, but the lady at the bakery was pregnant and was like, when are you due? And I said, July, but thinking this baby's never going to make it to July. And then she's like, I'm doing July too with twins. And then I had to be excited for her thinking, wow, she gets two, she gets two that are going to live and my baby's going die. She could be dying right now as I'm speaking to her. And so that was really hard.
Molly Sherwood:
That is so hard. And you went home that night with your family. What were the days leading up to this just at home, day-to-day life? How did you get through the mundane moments when certainly everything was clouded by this?
Bethany Weathersby:
I mean, we just prayed a lot. Our faith was really a big part of our life. And so that was definitely our strength and security came from that faith for sure. And we had a good support system, a great group of friends and family. And our church was great, even though a lot of them couldn't understand what we were going through, they were pretty helpful with the boys. And yeah, we prayed a lot and we had to place her, place our baby in God's hands knowing that we didn't really have any control over the outcome. So it just came down to trusting God with all of it.
Molly Sherwood:
And so going back to where we are now, you found out that they agreed to take on the challenge of one last IUT. So you went in to prepare for that IUT. And what was that day like?
Bethany Weathersby:
So that was again early the next morning we went in, but this time it felt like there was no hope. We just felt full of dread. And again, as we were walking back to our room, I think the nurse who was leading us was pregnant and she said, when are you due? And I said, July 2nd. And she said, oh, a 4th of July baby. And this time I felt like I could say it, so I just said, well, this baby's never going to make it to July. And then she was just silent. So yeah, they took us back there and put the monitor on the baby and they were getting everything ready and they couldn't find a heartbeat on the monitor. And so we were just so scared. But again, not expecting Lucy to survive. So the nurse was really concerned and searched and searched, couldn't find the heartbeat.
Bethany Weathersby:
And she ran out of the room to get the doctor. Doctor tried to find the heartbeat, couldn't find it. And so they brought in an ultrasound machine. It was a portable, so not great quality, it was grainy, but they got her on the ultrasound and saw that her heart was beating, but just barely, it was beating I think 60 beats per minute. And so the MFM was really concerned and ran out to get some other doctors to come in and assess. And so just seeing her heart just struggling to beat was really hard because I could see that it was taking effort, a lot of effort for the heart to beat. And so I was really concerned right then that she was in pain and that she was suffering. And so I prayed that if she was suffering and that if she wasn't going to survive, I asked God to just take her right then, just take her because I can't fathom her suffering, especially if she was just going to die.
Bethany Weathersby:
I didn't want to go through this whole procedure if she was on the verge of death and suffering and going to die in the end anyway. And so I just prayed that he would take her if that was what was going to happen anyway. And so the doctors came rushing back in and put the ultrasound on and her heart was still. And so God had done what I asked and she wasn't suffering anymore. But definitely the worst moment of my life. And there is no grief like seeing your baby's heart stop. And so my husband was just inconsolable and we had tried to prepare ourselves, I guess emotionally, but there's no way to prepare for that feeling.
Bethany Weathersby:
It felt like she had just taken this really big journey that throughout our lives we think about death and we fear it and it's a big deal. And I felt like my little baby had just done it. And I was in a way really proud of her and she had done it without me. And I remember wishing that I could have gone with her because it does not feel right for a mother to have a heartbeat when her baby doesn't. So they called time of fetal death. And yeah, there was just a lot of devastation. And I feel like my husband and I were in shock then because there were a whole lot of questions thrown at us. Do you want to go home and pack some more things and then come back and start labor or how should we proceed? And I was just like, I can't go home to my children pregnant with a dead baby, I'm not doing that.
Bethany Weathersby:
So I said, no, I want you to start labor right now. And so that's what they did. And in hindsight, I do wish I had been more prepared. I wish I'd bought a little dress, a blanket, a little hat for her to wear, things like that, a camera. But I had no idea what to expect or what I would treasure later. And so we started the induction process right then. And then I had to call all, I have a big family, there's five siblings in my family. And so I had to call each one of them, call my parents and tell them that the baby had died and it was terrible.
Molly Sherwood:
You talked about Josh just absolutely losing it. And what was that like between the two of you? I know as the pregnant mother, usually the husband feels an obligation to be the rock. And so what was that like for you watching him and how did you seek him during that time?
Bethany Weathersby:
I mean, I felt like there was just a divide. I mean, in one way it brings you really close because there's no grief like the parent's grief for the loss of a child. There really isn't. And so in some way, he was the only other person who loved her in this way and is grieving her in this way. But also grief is a very lonely thing. And he couldn't really comfort me at all. Nothing could comfort me and I couldn't comfort him. Nothing could comfort him. So it was just another loss to watch him grieve his daughter. When we started talking about having a family one day, I always wanted boys and he wanted a girl. So it was really a unique pain for him, I think losing his girl. And we also knew, they had told us, you can't have anymore children after this because the disease often is more severe with each subsequent pregnancy. And so we felt like this was our one girl, this is it. This is how we will end our family growing years with this trauma.
Molly Sherwood:
And you did receive counsel, not just that counsel, when you were told you cannot have more, but you even received counsel almost to imply that it would be selfish of you to desire more?
Bethany Weathersby:
Well, yeah. Several doctors came in and talked to us and one just really said you have two healthy boys, that's great. There's no need to really pursue another baby after this. And so you felt like that hope of a rainbow baby, a baby after loss was just shut down immediately. And so we had always wanted a large family and that was just another huge loss with the loss of our daughter. And honestly, it felt just as painful for me because I felt like I was losing all of my future children as well as my daughter Lucy. So yeah, it was just like this huge loss and grief and then the snatching away of the hope.
Molly Sherwood:
Let's talk about your induction that day and how they started it, how it went, and how her delivery was.
Bethany Weathersby:
So that was, again, uniquely painful because it was so similar to my previous two pregnancies. It felt exactly the same. They start the Pitocin and because my first two boys had to be induced. They were a week overdue. And so it just felt like that, except with the other two, it was the best experience of my life was meeting my sons. And so now this is mirroring that experience step by step, but it's the worst experience of my life. And it was just so bizarre that this could be happening. And also just this shadow of the greatest experience of my life. And so I remember asking the nurse, how do I go through labor knowing that my baby's dead? How do I do that? And she got tears in her eyes but didn't say anything. So I felt very out of my element. I wasn't prepared and I didn't have anyone to give me advice on how to do this, nobody.
Molly Sherwood:
Did anybody in the room that day say anything to you that brought even a shred of comfort or strength? Was there anything that was said or done that simply gave you the energy?
Bethany Weathersby:
Yeah, I mean, weirdly, there was one nurse, it's weird because it's a strange phrase, but she said, well, I had a first trimester miscarriage and I was devastated, but then I went on to have a rainbow baby and it just brought so much healing. So she said, so you just got to get back on that horse, just get back on that horse and have another one. And I remember thinking, well, she doesn't understand that I can't do that. I can't just get pregnant again because that baby will die too. But that hope of seeing it really did bring her this great healing and I had this ache for more children. And so that was the only thing that somebody said to me that was helpful or hopeful, even though it wasn't quite accurate for my case. So yeah, I felt very much alone and just didn't know what to do.
Molly Sherwood:
But her saying that, it sounds like you almost were able to have a little shred of some hope even that day, which is so hard to have just even for a glimmer, even for a moment.
Bethany Weathersby:
Yeah.
Molly Sherwood:
Yeah. Were you afraid?
Bethany Weathersby:
Yeah, I was afraid because I did not want to see in one way, I really wanted to see my baby, and also I did not want to see my baby who was still developing. She's not fully developed and she has fetal high drops, swelling and what's she going to look like? What's going to happen? So that was a big fear, but I was just in shock. I mean, really looking back, I know that I was in shock and so I wasn't really thinking rationally, but I did feel like I will never be whole again. I'll never have hope or be whole again. So yeah, I labored through the night and then gave birth to her. I gave birth to her the next morning. And again, very similar to my first two births. It was actually more painful than the two full-term births. And she weighed one pound exactly and was nine inches long.
Bethany Weathersby:
And I didn't see her when I delivered, but they took her away and then cleaned her up and brought her back. And this was really sweet and unexpected. But somebody had crocheted this little yellow dress, like a tiny yellow dress, and she was wearing that and she had a little matching hat on and she was laying in this crochet blanket with a little pillow under her head. It was really, really cute. And they brought her in a basket and she was really tiny, but perfect.
Molly Sherwood:
I know that picture, there's a picture of her in that outfit, and I have studied it when you've posted it before. And thank you for posting that because I think a lot of women have been really touched by her life and seeing her beautiful face, she is so precious, and I can picture it right now what you're describing.
Bethany Weathersby:
That was a gift to be able to see her, even though she wasn't fully developed, I could still see her and her little fingernails were perfect. Yeah, every fingernail on every finger on her hands were tiny and perfect. And I thought, oh, she looks like her brother Asher. And she had a really pretty little mouth, so I didn't hold her, which I really regret. I kept thinking, I don't know why, because I was in shock. But I kept thinking, oh, it might hurt her if I pick her up. Obviously doesn't make sense, but I could not think clearly.
Molly Sherwood:
That was a thing for you too when you were thinking about when you prayed because you were afraid she was experiencing pain, and that was your effort as a mother to continue to protect her, even toward the end, you didn't want her to experience that pain. And I'm sure that was still what you were thinking in that moment, not wanting to hurt her. Did Josh hold her?
Bethany Weathersby:
No. No. I felt like we were dead inside. I mean, we believe that she is in heaven. And so I also knew somehow simultaneously I didn't want to hurt her. But also, she's not even here. This is not her. It's not. She's not here. So I wish that we had just really understood this is it. You don't get to see her again. This is it. This is all of your time with her, with your child. This is it. So I wish we had held her and taken pictures with us and her. I took some pictures of her with my low quality phone, and that's all I have. And I wish that I had a professional to photograph her. And we had taken pictures with me holding her or Josh and me and her all together. But we didn't. So we did get her footprints and just some pictures of her. And we now have that little dress that she was wearing and her hat and the blanket. It's all so special and our most treasured possessions for sure. So I'm really thankful for those things.
Molly Sherwood:
Let's talk more about her and give her the attention that she needs. What about her name? How did you choose her name?
Bethany Weathersby:
Yeah, Josh and I had taught English in Korea before we had kids. And our very favorite student was named Lucy. And she was so cute and cheerful and full of life. And the name Lucy means light. And so we always thought it would be a really nice name for a future daughter. So that was just already picked out. And her middle name Dare is my great-grandmother's middle name. And so Lucy Dare.
Molly Sherwood:
Does it give you any comfort to know the impact that she's had on so many babies since? I'm sure you could not have fathomed that at the time, but how does it feel now looking back on the impact that she's had?
Bethany Weathersby:
Yeah, it's incredible. It's wonderful. And I think it's so fitting that her name means light because she has been light for so many other families and illuminated what needs to be seen and shown others the path to the best treatment and the best doctors. And it's amazing. That was one of the things that bothered me so much. When she died, was just like this wasted life, just this waste. And I felt like it could have been prevented. And we thought we had that miracle, remember, and there was no miracle we thought, but now I see that it wasn't wasted, it was not wasted. And there is this great miracle of her life in helping other babies survive, including her younger siblings, which came later, but they are only alive because of her.
Molly Sherwood:
On the next episode of the Allo podcast, Bethany will tell us just how Lucy's life saved the lives of her sister and brothers. 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-Ohopefoundation.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 & Johnson.