Amber already had a difficult and rare blood disorder (TTP) but treatment for her unknown disease resulted in her developing antibodies, resulting in alloimmunization in her first pregnancy.
Amber already had a difficult and rare blood disorder (TTP) but treatment for her unknown disease resulted in her developing antibodies, resulting in alloimmunization in her first pregnancy. A chance visit with a different doctor made the difference with her first child, but extraordinary measures were needed when she became pregnant with twins. Bethany and Molly are in for quite a tale of HDFN in already unusual circumstances.
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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.
Bethany Weathersby:
Hi, welcome to The Allo Podcast by the Allo Hope Foundation. I'm Bethany Weathersby.
Molly Sherwood:
Sorry.
Bethany Weathersby:
Molly is falling on the floor laughing because I don't know why. But she has been doing the intros of past few recordings, so it's my turn to do it.
Molly Sherwood:
It's your turn but you're making really funny faces.
Bethany Weathersby:
And now she's crying laughing at my attempt. So welcome.
Molly Sherwood:
We need to just keep going. Can we just keep this? I can't do this again.
Bethany Weathersby:
Just keep going.
Molly Sherwood:
All right. All right. And I'm Molly Sherwood.
Bethany Weathersby:
All right. And we are super excited about our podcast today. Molly and I got to hang out. Molly, I don't even know what to say.
Molly Sherwood:
I'm fine. Totally fine. Yeah, we got to hang out in Norway. We went to a conference and spoke in Norway. It was so cool.
Bethany Weathersby:
It was so, so fun. Left our families.
Molly Sherwood:
Oh yeah, we did that. That was awesome. Really liked that part. And food was great. We jumped in a fjord, which is very unlike me.
Bethany Weathersby:
Yes, it was very cold.
Molly Sherwood:
It was so cold.
Bethany Weathersby:
Yeah. Let's talk about your intense anxiety of open water.
Molly Sherwood:
I have a serious fear of open water. Well, really any water. And it's not that I can't swim. I'm a very anxious over thinker in general. And so when I think about my relative smallness to the enormity of the water and the creatures inside and the depth, and I just start picturing it and imagining it, and I just freak out. Freak out. Like panic attack, can't swim anymore, even though I can't swim. So it was big for me. I jumped in a fjord very quickly and then doggy-paddle sprinted to the side. That was it. But you got a great picture. We got great pictures of each other doing it, so that was good.
Bethany Weathersby:
Yes. So every morning at this conference, they would meet at 7:00 AM and jump into the icy fjord. And this is why it's also incredible that Molly did that. Before we jumped, we looked into the fjord and you would think that it would be icy and clear, and it'd be beautiful. No, no, no. The most disgusting seaweed I've ever seen in my life.
Molly Sherwood:
So gross.
Bethany Weathersby:
Huge like waving seaweed branches.
Molly Sherwood:
Really long.
Bethany Weathersby:
Plus a huge, huge jellyfish just right there. And then Molly, you still jumped in.
Molly Sherwood:
I jumped in.
Bethany Weathersby:
That was amazing.
Molly Sherwood:
But it was like, I could not think about it. I was like, "All right, Bethany, I'm doing this." And I just ran and jumped in.
Bethany Weathersby:
Think it was that evening at dinner, someone else told us that there have been a lot of orcas in the water.
Molly Sherwood:
And I was like right...
Bethany Weathersby:
Were you there?
Molly Sherwood:
Yes. Yes, I was there for that. How can I forget? I would've never jumped in if I knew that before. That's not going to happen again.
Bethany Weathersby:
Oh, okay. It was amazing though. Today I'm so excited because we have an amazing guest on the podcast, Amber Landry. And she truly is one of the toughest alloimmunized moms I've ever met. And this is one of the most incredible HDFN survival stories I've ever heard. So Amber, welcome to the podcast.
Amber Landry:
Thank you, Bethany.
Molly Sherwood:
Welcome, Amber.
Bethany Weathersby:
We're so glad to have you here.
Molly Sherwood:
Yes, I've heard just little bits and pieces of your story, and it is incredible. So I cannot wait to dive in today. So before we have the whole mom and pregnancy talk, will you tell us a little bit about yourself? Where are you from? What do you do when you're not momming?
Amber Landry:
I'm from Ohio. And before the twins were born, I was environmental specialist, worked full time, married to my husband for 11 years now. And now just taking care of the kids and all the usual kind of normal life stuff now. None of the exciting medical stuff anymore.
Bethany Weathersby:
Oh, that's a great place to be though.
Molly Sherwood:
Yes. You probably have such good perspective on how good it is to just be in normal life mode.
Amber Landry:
Yeah, definitely.
Bethany Weathersby:
I definitely appreciate it now more than I would have had I not had the crazy pregnancies, I think. What about you, Molly?
Molly Sherwood:
Oh yeah, I feel like that too.
Bethany Weathersby:
I am ready to hear your full story, Amber. So let's dive in. And before we start, I did want to point out that I believe this not only was an incredible story of survival for Amber's babies, but also for her. Amber has not one but two rare blood disorders, one that can threaten the lives of her babies, which is the HDFN. Of course, we'll talk about that. But also another that can, I think, tell me if I'm right, Amber, can threaten your baby's lives and your life, and it's TTP. So can you just tell us a little bit about that before we start?
Amber Landry:
Sure. I was hoping to get a plug into that. TTP is very rare. A lot of things can cause it, being drugs or hereditary, but the most common is an autoimmune condition. With TTP, you have antibodies that attack an enzyme in your blood called Adam TS 13. And it can cause clotting in your blood because that enzyme isn't doing its job anymore, which is to break up the little clots. So it can cause different problems, but usually it's like the organs, like your brain, hard or other organs that have issues. So it requires hospitalization, plasmapheresis, steroids. Once you get to a certain platelet number, because my platelets will go down because they're all clumped up, but once I get to a certain number, then I can be released from the hospital on steroids.
Bethany Weathersby:
So it's just an ongoing condition for you for the rest of your life?
Amber Landry:
Yes.
Bethany Weathersby:
And does that always make pregnancy more high risk?
Amber Landry:
Yes. It's definitely a known trigger. Not for everyone, but it's definitely one of the few. I don't know if they know hardly anything that triggers it. It's unknown, but definitely there's an association that pregnancy will trigger it. And often some women, their first experience with TTP is with their pregnancy.
Bethany Weathersby:
Oh my goodness.
Amber Landry:
That wasn't with me. I've had relapses prior to the pregnancies, but.
Molly Sherwood:
When did you first find out you had TTP?
Amber Landry:
And that's a crazy story. I got sick for the first time, I was about 23. I had taken a job with my best friend to teach English in South Korea and started feeling sick after being there for a couple of weeks and didn't know what was going on. I just knew it strange symptoms, like a rash on my legs. And when I coughed, there was blood in it sometimes, but I wasn't think too much of it. And then I started having problems with using my hand. I started becoming temporary, paralyzed. I was trying to type, and I couldn't type. And I was like, okay, I really need to get it checked out because this seems really bad.
And next thing I know I was getting a blood draw, and then right after I did the blood draw, I had trouble walking. And so they took me to the hospital.
Bethany Weathersby:
Oh, my gosh.
Amber Landry:
And last thing I remember was just laying on a hospital bed in a hallway because I didn't have a room. And then I don't remember anything. And I was in a coma for 10 or 11 days I'd say.
Bethany Weathersby:
Oh, my gosh, had no idea. And that was all in Korea?
Amber Landry:
Yes.
Molly Sherwood:
Have you guys talked about that before? Because you both taught in Korea.
Bethany Weathersby:
Did we talk about that before, Amber?
Amber Landry:
I mean, I may have glossed over it. I can't remember if that came up or not.
Bethany Weathersby:
Oh, my gosh. So when was that? I wonder if we were there the same.
Amber Landry:
2008. I was there from October.
Bethany Weathersby:
Oh, my gosh.
Amber Landry:
September, October 2008.
Bethany Weathersby:
I was there.
Amber Landry:
What?
Bethany Weathersby:
I was there too. I was in South Korea then.
Amber Landry:
Which city?
Bethany Weathersby:
Seoul.
Amber Landry:
I was in Busan.
Bethany Weathersby:
Oh, yeah. What? So you didn't get to stay long?
Molly Sherwood:
Oh my gosh, guys.
Amber Landry:
No, I went home after all that.
Bethany Weathersby:
Oh, I'm so sorry. I love Korea so much. Oh, I hate that you had to leave.
Amber Landry:
It was disappointing not to be able to spend hardly any time there.
Bethany Weathersby:
Wow. So it just happened to show up there for the first time. And did you think it was connected to being in Korea or were you just I had no idea.
Amber Landry:
I always thought it was, but you can't really know. My friend thought, that was there with me, she thought I didn't seem like myself as soon as we got there. So she thinks it was going to happen regardless. So I prefer to think that wasn't going to be the case. But the crazy thing is there, I have O negative blood, and they don't have much O negative blood in East Asia, just naturally don't have that blood type. So I had a hard time. They were giving blood transfusions, even though that's not really what I needed. I needed plasma, but that's how I got the autoantibodies, I was getting emergency blood transfusions.
Molly Sherwood:
So you become alloimmunized from your transfusions. Wow. Okay. So I guess we haven't gotten to this yet, but do you have Anti-D?
Amber Landry:
And I think E F Y A and Kell.
Molly Sherwood:
Wow. From all the blood transfusions?
Amber Landry:
Yeah. It was usually when other foreigners that had O negative, which is more difficult for a foreigner to donate. And then they actually brought in blood from the DMZ zone. They flew it in on a helicopter. My friend didn't hear the helicopter on the roof.
Molly Sherwood:
Wow.
Bethany Weathersby:
So they just have a stockpile of blood at the border.
Amber Landry:
Apparently, I guess.
Bethany Weathersby:
Makes sense. That's so interesting.
Molly Sherwood:
Oh my goodness. It's a miracle you didn't have a transfusion reaction eventually.
Amber Landry:
Yeah, I'm not sure how much they gave me.
Molly Sherwood:
Since you were getting multiple transfusions and developing antibodies the whole time.
Amber Landry:
Yeah, I'm not sure how many units I ended up getting.
Molly Sherwood:
That's so interesting.
Bethany Weathersby:
Okay. So then you come home and you kind of learn about your condition, right? And then, did you kind of get it under control?
Amber Landry:
Yeah. We got it under control eventually, but I didn't actually learn that I had TTP until 2011. They just didn't know what it was. I just recovered and then was fine for three years and then suddenly started having the same symptoms again. But I caught it much earlier this time and went to the hospital and was admitted, and after a few days I was diagnosed and knew what it was.
Molly Sherwood:
So what do you do to keep heading it off? To prevent a sort of, I don't know, do you call it a relapse or a flare?
Amber Landry:
Yeah, relapse. Usually checking my numbers. There's a level, a blood test you can do to check your MTS 13 level and making sure that number stays high. So I have that checked. Depending on how high it is, the least amount, at least frequently every three months, but if it's going down more frequently than that, and if it looks like it's getting low enough to relapse, I can get a drug called Rituximab that can help suppress my immune system and keep a relapse at bay.
Molly Sherwood:
Okay. Let's go to when you decided to get pregnant. I guess you already had probably some worries in mind knowing that you were dealing with TTP.
Amber Landry:
Yes.
Molly Sherwood:
But how did that pregnancy progress? Were you monitored extra? Oh, and did you know that you had antibodies by then?
Amber Landry:
Yeah, I was aware of the antibodies. So I saw someone with maternal fetal medicine, I think around 12 weeks or six.I can't really remember, but I thought it was 12 weeks. And then they said they would do the MCA Dopplers maybe at 16 weeks or so. I already had critical titers at 12 weeks.
Molly Sherwood:
What were your titers?
Amber Landry:
I know definitely D. I thought it was 1,024.
Molly Sherwood:
Okay, yeah.
Bethany Weathersby:
Oh, wow. On your first pregnancy.
Amber Landry:
And the other ones were much smaller. I think C was like 32. Then after that...
Molly Sherwood:
So no one cared about those, then. They were just worried about your...
Amber Landry:
My husband doesn't have Kell.
Molly Sherwood:
Oh, that's good.
Amber Landry:
We were only worried about C and D mostly.
Molly Sherwood:
Okay. So then what did that pregnancy look like in terms of your care and your monitoring?
Amber Landry:
I went to Ohio State for the monitoring. I had MCA Doppler done and on a regular basis, but we never got a high reading. It always stayed under 1.5. So the whole pregnancy, everything was looking really good. The doctor said, the one doctor I've been seeing the whole time was like, "Oh, we're doing so great. Maybe we'll just let you go full term." But then I remember one day I saw a different doctor. And he was like, "No, no, no, you can't go full term with these titers. You have to deliver at 37 or 38 weeks. There's no way this baby's not going to the NICU." And it really freaked us out because the whole pregnancy, we were a little on edge before the Dopplers, but we thought everything was going well and the baby was going to be born healthy, and that we would just go home and there'd be no problem. So I was really grateful for that doctor that kind of prepared us. And I needed to deliver a little early.
Bethany Weathersby:
How were you physically through that pregnancy and the TTP? How did that go?
Amber Landry:
Well, I was taking immunosuppressant the whole time, just like a pill. And I think I had to go up on my dosage a little. But other than that, I had no relapses or issues with it both during the pregnancy or afterwards.
Bethany Weathersby:
That's great. And obviously no blood clots or anything. They were looking closely for that.
Amber Landry:
Yeah.
Bethany Weathersby:
Yeah, that's great. Okay, so now tell us about the delivery and meeting your baby for the first time.
Amber Landry:
So the last week of the pregnancy, I noticed the baby not moving as much as he was, but I was doing my kick counts and it seemed like he was still doing 10 kicks in an hour, but it took longer to get there than it had done previously. And I was worried about it the last week and I thought about getting him checked, but I just thought since he was getting bigger that he couldn't, they don't move as much because they're running out of space. So I just went into my scheduled delivery day, scheduled induction, and told them I was concerned the baby was moving less. And they looked at him and they said he didn't look great, he didn't look bad from what they were looking at. So they started the Pitocin and they said maybe that'll perk him up some. But unfortunately, his heart kept decelerating when I was having contractions.
Yeah, things weren't really progressing very well as far as, I wasn't progressing as fast as they wanted. The baby didn't look as good as they wanted. And I could tell by the doctor who happened to be in that night because my regular OB wasn't going to be until the next day, Heather Fry, I could just tell she didn't look happy when she was watching the monitors. And I was like, "Oh man. I'm like, what's going to happen?" I was scared because they can't tell what's going on with the baby. They stopped the Pitocin at one point, and they just opted after a while to, they wanted do a C-section. So I had a emergency C-section at 2:00 in the morning and he was born, and he was my first baby. I don't really know what to expect, but he wasn't crying or anything. I couldn't see anything with the curtain. They just got him out, and she said he looked so pale and he wasn't breathing.
Bethany Weathersby:
Oh, my goodness. Oh my gosh, Amber.
Amber Landry:
So they took him over and started getting him air and whatever he needed. But yeah, I hardly remember even seeing him. It just kind of like a blur. I think they showed the baby briefly to Nate and us, but we didn't hold him or touch him or anything before taking him off to the NICU.
Bethany Weathersby:
You never heard him cry?
Amber Landry:
Not then that I can remember. Maybe he did eventually, but I didn't hear it, and I wasn't necessarily watching for it. I guess I didn't even think about it.
Molly Sherwood:
This reminds me a little bit of Brittany's story, which is also in this season with her first allo baby. And she also talks about toward the end just having that feeling of they're not moving the way that they should. And I just feel like I hear this story over and over again of the mom's intuition turning out to be something meaningful. You know what I mean? It sounds like you already were noticing changes in him before he was born.
Amber Landry:
Yeah, I can't exactly remember. I think the last MCA was about nine days before I delivered, so it never was clear to me did he suddenly get really anemic within nine days time span, or was he sick before that?
Bethany Weathersby:
Yeah, they do know that after 35 weeks, the MCA scans are not quite as accurate actually. And that's one reason why they encourage the delivery between 37 and 38 weeks, even if everything looks great because you can't really be sure with the monitoring exactly how the baby's doing. Do you know what his numbers were? Do you know how anemic he was?
Amber Landry:
It was really low. I want to say between two and three essentially.
Bethany Weathersby:
Hemoglobin?
Amber Landry:
Yeah.
Molly Sherwood:
Wow, that's so low.
Bethany Weathersby:
Oh, my goodness.
Amber Landry:
I'm pretty sure that it was real low. He had two pretty much back to back transfusions.
Molly Sherwood:
Bethany, what should the hemoglobin be and then what's a normal point at which people generally transfuse for a newborn?
Bethany Weathersby:
So I'm used to hematocrit. So with hematocrit it's like 40 to 45 I think is usually the normal range. And then we usually transfuse in utero. Well, my kids were usually low twenties or kind of mid-twenties with the hematocrit, so I don't know. So hemoglobin is about one third. That's probably a very confusing answer to that question.
Molly Sherwood:
So you're saying seven or eight for a hemoglobin?
Bethany Weathersby:
For transfusion.
Molly Sherwood:
CJ, our producer, was just doing some research on the backside. He says that infants should be between 13 to 19 for hemoglobin in the first 30 days of life.
Bethany Weathersby:
So starting out with a hemoglobin of two to three is incredibly low.
Molly Sherwood:
Yes.
Bethany Weathersby:
Wow. Okay. So that doctor who said, "No, you should not go full term," that doctor saved your son's life.
Amber Landry:
I pretty much told him as such. When I went in for my twins' pregnancy, I think I saw him. I definitely saw him again and let him know.
Bethany Weathersby:
Oh, good.
Amber Landry:
I was grateful for that.
Bethany Weathersby:
Okay. Tell us about your baby. How much did he weigh? If you remember. What's his name?
Amber Landry:
His name's Walden. And he weighed, I think six pounds, 10 ounces.
Molly Sherwood:
That's awesome. So what was the rest of his NICU experience and how was that for you being a first time mom and a NICU mom?
Amber Landry:
Yeah. Definitely, a shocker. I knew he was sick when he was born, but I went to see him later and they were telling me everything they had done and everything that happened. And then I just started bawling because I just was up in my room and had no idea he was so bad. So he was in the NICU for 10 days. And he got, I'd say at least two rounds of IVIG, maybe more. He was on the bilirubin lights, and he just needed the two transfusions while he was there. Then he was discharged and then monitored for a while after that, probably until, I don't know, about 18 weeks or whatever's standard. And thankfully, he didn't need any other transfusions after he was discharged.
Molly Sherwood:
Wow.
Bethany Weathersby:
He is such a miracle, and I'm so sorry that you had to go through that with your first pregnancy. I mean, it's terrible for anyone to go through that, but for that to be your introduction to motherhood and childbirth and pregnancy is just extra hard I think.
Amber Landry:
I guess I don't know any different. Every hospital, I've never had the baby in the room with me or have skin to skin right away or anything like that.
Molly Sherwood:
So how did that experience play into, obviously you decided to have more children after that. Was that a hard choice to make? And when did you decide you were ready for that?
Amber Landry:
We were a little worried after everything we went through. And we talked to maternal fetal medicine before getting pregnant, and they thought since this pregnancy didn't have to do any IUTs that the next pregnancy, it would probably be pretty manageable. That maybe he'd need a couple of IOTs during the pregnancy. They advised me that it'd be okay to get pregnant again and just follow up with them.
Bethany Weathersby:
So I mean, that's very courageous of you guys to have more babies after that. I always think it's so courageous for women to face such risk and hardship to bring life into the world. I feel like I'm going to ruin the surprise, but it was twins, right? And when did you find out about that?
Amber Landry:
At seven weeks, at that ultrasound, and usually the technician was kind of excited. She was just like, "Oh, I see this and then this." Maybe she's referring to the heartbeat. She's like, "That means it's twins." Just real casually. And I was like, "What?"
Molly Sherwood:
Oh, my gosh. But for you, were you like, "Oh my gosh, what does this mean now? How do I deal with a twin alloimmunized pregnancy?"
Amber Landry:
That's exactly what I thought. I was like, "We are screwed. This is terrible." My husband was all smiling, but I looked like a deer in headlights after they told me that. I just knew it was already going to be high risk, but this was just not something I was counting on.
Bethany Weathersby:
Just icing on the cake. Did that make your TTP more dangerous because you were carrying twins?
Amber Landry:
They said it wouldn't. My hematologist thought since I did fine with the first pregnancy that we'd just follow the same thing for this next pregnancy, just had to keep a close eye on me and go from there. I was still on the same drug I was taking before for suppressing the immune system and stuff. But I guess in hindsight, I probably would've taken a different approach had I known going into it, it was going to be such a rough go. You can have the rituximab drug prior to a pregnancy. Some people get that six months before getting pregnant and then have the baby. And I thought that might've been a better route to go because the drug's a little bit stronger than the drug I was taking.
Bethany Weathersby:
Were they identical or fraternal twins?
Amber Landry:
Fraternal.
Bethany Weathersby:
Fraternal, okay. And they had separate placentas?
Amber Landry:
Yeah. They had separate everything. Yeah.
Bethany Weathersby:
Okay, good.
Amber Landry:
Yeah, had that going for me.
Bethany Weathersby:
That's good. Okay. Do you know what your titers were starting out?
Amber Landry:
They had to have been higher right from the first pregnancy, I assume, or could it be lower?
Bethany Weathersby:
No, no, it could, but let me look. I actually took notes. I went back and read our messages because...
Amber Landry:
Bethany knows.
Bethany Weathersby:
We were both so detailed with the numbers and medical information. Well, you just said they were in the thousands and that was at seven weeks, Amber.
Amber Landry:
I think it was off the charts. I don't even remember the number.
Bethany Weathersby:
Yeah.
Molly Sherwood:
Oh my goodness. I feel like this could have been something where IVIG and plasmapheresis might have potentially been applicable, but it just depends on what the doctor's comfort is and what their knowledge is at the time. But now, if a mom were to come to us with the same scenario, I feel like we would be like, oh, I wonder if that's an option.
Bethany Weathersby:
So nothing like that was offered, Amber, to try to delay the onset of fetal anemia?
Amber Landry:
No.
Bethany Weathersby:
Especially since you had the titer in the 1000s and twins.
Amber Landry:
No. It was just, we'll monitor you with MCAs. It's hard to remember what conversations happened when, but yeah, there seemed to be no special thing. It was just going to proceed as we did before.
Bethany Weathersby:
I believe your first MCA scan was 16 weeks exactly. Is that right?
Amber Landry:
Yeah. I thought it would just be normal like all the other MCA scans. Even my husband was busy with something I even told him like, "Oh, you probably don't need to go to this one. It's going to be normal." But they did the scan and then the technician left, and I saw the number. So while we waited for the doctor, I plugged the numbers into my phone trying to calculate the MCA number. I just knew which should be under one and a half. And then I kept getting it was like two something. And I was like, "That can't be right. That's just too high." And they came in and it was another technician, maybe a doctor too, and they said, "We're going to do another scan with a different technician." I was just pretty much crying. I knew the numbers were right. And she was getting the same numbers, so I knew that things were really bad.
Bethany Weathersby:
You want those babies.
Amber Landry:
Yeah.
Bethany Weathersby:
I remember a similar feeling when we had Lucy's first MCA scan, and I was looking for the PSV. And I thought I found it and I was like, "That can't be right. That can't be the PSV. I must be looking at a different number." Because hers was also over two, and it's just this such a shocking feeling and just terror, honestly.
Amber Landry:
Yeah.
Molly Sherwood:
And you know your condition so well that you know what that means. You knew the implications of that, and that must've been so overwhelming.
Amber Landry:
Yeah. I actually thought of you, Bethany, that day. I had read your blog. I was aware of your story and everything, and I just was thinking of you and Lucy. I was just devastated. I was like, "This can't be happening to me."
Bethany Weathersby:
And I do know that's when we connected. We reached out, and you shared your phone number with me. And then I called you and we just talked. And from what I remember, it was a great conversation, but also just really, really scary.
Amber Landry:
I just remember going home and trying to figure out what to do, just reading a bunch. And this is when I reached out to Bethany. And I finally talked to her and she's like, "Well, you shouldn't let that doctor at Ohio State do it. You should go see Dr. Markham." So I was like, "Okay, that's what I'll do."
Bethany Weathersby:
Okay, so you had that MCA scan on a Thursday. And they had said, come back Monday and if it's still high, we'll try to do the IUT. And that was the big problem.
Molly Sherwood:
Nope.
Bethany Weathersby:
Oh, and they said there was no hydrops, which was great. No fetal hydrops, no signs of that. And I think sometimes, Molly, tell me if you see this as well, but I feel like the absence of hydrops kind of gives a false sense of safety.
Molly Sherwood:
Definitely. Maybe we should link to that article that we really like that was done out in Lighten about how IUT outcomes are significantly worse if you wait until the baby has hydrops. And so that's why instead focusing on that 1.5 MoM critical.
Bethany Weathersby:
So I'm just guessing. I wonder if that kind of gave a false sense of like, "Oh, we could maybe wait until Monday." For that team, I don't know. With MoMs over two, it felt too risky.
Amber Landry:
For sure. I wasn't comfortable waiting at all.
Bethany Weathersby:
So we were both agreeing that Dr. Markham sounded like a good choice. And then I'm pretty sure she got you in the very next day on a Friday.
Amber Landry:
Yeah. She said we could drive down and get an MCA repeat in the morning. And she kind of was trying to assure me that maybe it was just a mistake or something. So we got the scan and it confirmed, yeah, the MCA is still high. And she said I could have that IUT that day, but had to wait until the evening or I could come in the morning on Saturday if I wanted to drive home, and then come back in the morning. With the circumstances of just being so upset and not wanting to wait, it was a two-hour drive for us. I said, "Let's do it tonight. I'm not going to get any sleep tonight if I just drive home knowing what I know." And so we had it done that evening, and it went well. I think she did, is it an IPT where they put the blood in the stomach? So she did that with both. And I think that was her first for a 16-week transfusion. That was her first one.
Bethany Weathersby:
Wow. With twins.
Amber Landry:
I remember her saying, she's like, "Oh, I think I could get that vein, but I'm not going to do that. I'm just going to do IPT."
Bethany Weathersby:
I can't imagine how hard that must've been. Two babies at 16 weeks who are already very anemic. That's incredible.
Molly Sherwood:
Yeah. And our next episode this season is with Dr. Markham. This is perfect that we're talking about this because obviously Dr. Markham has proven herself as a wonderful physician who treats this condition, right?
Amber Landry:
Yeah.
Bethany Weathersby:
And the fact that she did that. It was a Friday night and she also offered on the Saturday, but some MFM say, "Well, we're closed on the weekends. We can see you on Monday." But that's amazing that the same day she met you, she performed the IPT that evening and was just ready to take care of those babies.
Amber Landry:
Returned my call herself on Thursday the same day.
Bethany Weathersby:
And really quick, I just wanted to say that an IPT is intra peritoneal transfusion. And that's usually done when the umbilical vein is too hard to access. And usually that happens when the babies are just too small, and so the intra peritoneal transfusion just puts blood into the baby's peritoneal cavity, the abdomen. And then the baby slowly absorbs that blood into their bloodstream over the next few days. Apparently, it went really well.
Amber Landry:
Yeah. I think I remember the number too. It was like seven milliliters of blood. I don't know if each baby got it, but I just remember it was such a tiny amount. They took a whole pint of blood but only used a few milliliters, and then had toss the rest of it.
Bethany Weathersby:
Oh, do they throw it?
Amber Landry:
Every time they did it that way. And I was like type O blood because of all my antibodies.
Bethany Weathersby:
Oh, right.
Amber Landry:
I was like, "Can't we just seal it back up?"
Molly Sherwood:
Save it for next week?
Amber Landry:
Yes.
Molly Sherwood:
Oh, what a waste.
Bethany Weathersby:
How did she manage that? How did they find that blood the same day?
Amber Landry:
They did it. They drew the blood in the morning, and then they spent the day finding a match.
Bethany Weathersby:
That's amazing. Amber, that they were able to do that so quickly.
Amber Landry:
Yeah, for sure.
Bethany Weathersby:
Wow, with so many antibodies. Okay, so that was IUT number one at 16 weeks. And then how did it go from there? You stayed with Dr. Markham right as your MFM from then on?
Amber Landry:
Yeah.
Bethany Weathersby:
Tell us how the rest of the pregnancy went after that.
Amber Landry:
So we got in this routine of driving down to Cincinnati. I think it might've been a whole week between that one and the next one, but I'm not certain, but it was definitely the following week. At some point we drove back to Cincinnati. And what we would do was drive the night before and have a blood draw so they could type and cross the blood and get a match overnight. And then we'd stay in a hotel, then come in the morning for the transfusion.
Bethany Weathersby:
We did that too. We were driving four hours to Atlanta, so we did the same thing. And it turned out to be kind of fun in a way. I mean, I was always terrified heading into that IUT, but it was nice to have alone time with my husband. Did you ever feel that way?
Amber Landry:
I can't remember that. We only have the one kid and we have grandparents in town that are really watching whenever we want, so we didn't have that. We're getting away nowadays. Yeah, this is nice.
Bethany Weathersby:
I think you had the second one at 17 weeks, and I guess that one okay?
Amber Landry:
Yeah.
Bethany Weathersby:
Wow. Were you just as scared for that one or did you feel a little bit more confident going into that second IUT?
Amber Landry:
Yeah, I thought about the same going in each one because you just don't know how it's going to go. They talk to you before the procedure, letting you know the risks and all that. And it was just kind of like what if it doesn't go smooth this time?
Bethany Weathersby:
Yeah. They tell you everything that could possibly go wrong, even if it's the most minuscule chance of it going wrong. I think they're required to list it out out, and that's really scary.
Molly Sherwood:
That's unfortunate.
Bethany Weathersby:
To be reminded of those things. Okay, so they did another IPT, I'm thinking at 17 weeks. And then what about, so the third IUT again was at 18 weeks, I think.
Molly Sherwood:
Wow.
Amber Landry:
Yeah, I think we were going every week for a while. And then eventually, I think it got to the point where we could space them out, maybe after the first three then started going. I forget if she was able to put the blood in the vein, the IUT at 17 weeks or 18 weeks, but it was one of those two. And then once they could do that, they could draw the blood from the baby and calculate more accurately, when will this baby need blood again? So I think that helped space them out a little bit.
Bethany Weathersby:
Yeah, sure. Yeah. So for an IPT, they can't actually draw the baby's blood like they can during a typical IUT through the umbilical vein. So they're kind of guessing, right? I mean, they don't really know beginning or ending hemoglobin or hematocrit. They're just guessing, which is hard. I can't believe she was able to manage that so well with two babies.
Molly Sherwood:
And she's super smart to space it. I mean, obviously the babies were so sick to start that she probably had to do just a little bit at a time. If you do too much blood, which can be a temptation sometimes, then that puts too much pressure on the baby's heart. So that's probably part of why she was just given a little bit, even if it meant doing IUTs every week until the babies were in a good spot.
Bethany Weathersby:
And Amber, I was looking back at our notes. I'm sorry, I keep bringing this into it, but...
Molly Sherwood:
No, the notes are great. I'm loving these notes.
Bethany Weathersby:
Is that okay? I feel like I'm taking your story away from you.
Amber Landry:
Not at all. I'm glad to have you jogging my memory. I was looking at pictures to jog my memory, but I didn't think to look back between our notes.
Bethany Weathersby:
Well, you were just so detailed with the medical information, like I said earlier, so that just made it easy. Okay. So it said that with baby A, she was able to get the vein at that 18 week IUT, but not for Baby B. But baby A's hemoglobin was three, which is super low starting out. And then she got it to, I think it's like 14 or something. Okay, so let's keep going. This is just incredible that she's doing double IUTs every time and now, so you had one at 16 weeks, 17 weeks, 18 weeks, and then you had another one at 19 weeks, so that was your fourth IUT. And then I think after that she was able to space it out every two weeks or so.
Molly Sherwood:
How many did we end up with?
Amber Landry:
I think 10 total.
Bethany Weathersby:
And I have a quick question about those numbers, Amber. Was Dr. Markham just giving you the numbers every time, or did you have to really push her to give you that information?
Amber Landry:
She would just give the information.
Bethany Weathersby:
Oh, that's great.
Molly Sherwood:
I love that.
Bethany Weathersby:
I love that.
Molly Sherwood:
Love that. It's like she's trusting you. She knows that you understand and you're competent, and you will benefit from this information.
Bethany Weathersby:
I do know that a lot of women don't automatically get that information from their care provider, and then sometimes it's just hard. They have to ask specifically for it, and then sometimes there's some pushback. I think that always helps to give the information to the mom, and that helps you, I guess, feel more empowered and advocate better for your baby. Okay. So all of your IUTs, let's talk about the delivery. Do you remember how many weeks they were?
Amber Landry:
34 weeks.
Bethany Weathersby:
That's amazing.
Molly Sherwood:
Can you squeeze That many IUTs in before 34 weeks? That's something else. That's incredible.
Amber Landry:
I remember her saying she's done 10 IUTs on someone else. I don't know when they started or when they stopped because I asked how many she's ever done in one person because I figured that was going to be me too.
Bethany Weathersby:
Looking back, I just remembered something I wanted to touch on. I think it was 23 weeks when the babies were viable, and I feel like there was one IUT where one baby's heart rate kind of dropped. And I can't remember which one that was, but I do think that they had a conversation with you that was really tough about what do we do now that they're viable if one baby goes into distress? And how was that conversation? What was that like?
Amber Landry:
Oh, it was terrible. They basically had to decide do you want to let one of the kids live or do you want to take them both out for the sake of one or do you want to let one have a chance to live in the womb longer and have a better chance of less complications at birth?
Bethany Weathersby:
Ho do you even make that decision?
Amber Landry:
Yeah, we had to decide. It was up to us. What do we do if one baby goes into distress? Do we try to deliver or just let nature take its course?. It was a pretty terrible thing to do. And the guy was going on and on about all the different birth problems that you could expect that they were born at this gestation. It was just on, he went basically from head to toe what could be wrong. And it was just so... I was just crying, and my husband just told him to stop.
Bethany Weathersby:
It's terrible.
Amber Landry:
There was one thing I wanted to talk about.
Bethany Weathersby:
Yeah. Please do.
Molly Sherwood:
Anything.
Amber Landry:
They discovered when I came in for one of the IUTs... Or no, when I came in, because I was still getting monitored at Ohio State as my regular checkups for everything else, and they discovered that for Baby B, his one of... Is it two veins and one artery in the cord?
Bethany Weathersby:
Oh man, I can't remember.
Amber Landry:
I think it's two arteries in one vein.
Bethany Weathersby:
Yeah. That sounds right.
Amber Landry:
One of the arteries had clotted in Baby B.
Bethany Weathersby:
Oh, wow.
Amber Landry:
His other one was still open, but it's kind of supposed to be a known complication of getting IUTs. Even though they're not hitting the artery, I think something happened. I was kind of freaking out at that point. So I was like, "What's going to happen? One of his arteries not working. He's only got one artery and is he going to be able to take any more IUTs? Is this going to happen again?"
Bethany Weathersby:
Yeah, I feel like I remember that. How did it resolve? Do you remember?
Amber Landry:
Yeah, he just did fine. We kept going, doing more transfusions, and he did okay. Thankfully, nothing else happened. It was towards the end, thankfully. That's pretty scary.
Bethany Weathersby:
That's so scary. How were you feeling physically with your condition through all of that? A twin pregnancy plus all of that medical intervention for them?
Amber Landry:
Yeah, I guess we didn't even talk about, I had a TTP relapse at 12 weeks pregnant.
Bethany Weathersby:
Oh, man.
Amber Landry:
Before I realized the babies were immune, had any issues or being anemic, I had a relapse myself. But thankfully, we caught it super early. It just happened to be during a random blood draw because I didn't have any symptoms. So I got my treatment and everything. I was in the hospital for 10 days and got out. And thankfully the babies did fine with that. I was really worried because you can definitely lose the baby during a TTP relapse. It's pretty common. But I think because we caught it so early that I'm going to say I was probably eight weeks, nine weeks pregnant, not even very far long.
Bethany Weathersby:
10 days. So you were having treatment that whole time in the hospital?
Amber Landry:
It was in December, and then January I found out they were anemic. And then the pandemic started in March.
Bethany Weathersby:
Right.
Molly Sherwood:
Oh, my gosh.
Amber Landry:
This is the worst year ever.
Bethany Weathersby:
I forgot about the pandemic.
Amber Landry:
It wasn't a big deal to me. I was like, "I'm just going to get through this pregnancy."
Bethany Weathersby:
A bigger problem.
Molly Sherwood:
Just listening to this story and the lengths that it took and the expertise required to keep those babies alive is another perfect example of, it's actually something that Bethany and I presented on in Norway, which was that in our research we've shown and seen that disease severity does not necessarily affect a baby's likelihood to survive. I mean beyond a certain point. When we separated into groups, the women who got good quality care as their moms rate. We had the moms rate the quality of care they received versus not so good. And in those two groups, both moms had equally severe disease, but in the good quality care group, they were more likely to receive treatment and more likely to live. So what we see is even in the most difficult cases like yours, Amber, good care is what predicts whether baby will survive, not necessarily how bad the disease is. And this is a perfect example.
Amber Landry:
We had agreed to deliver 34 weeks. I was happy with that. I felt like they were safer out than in at that point, and we were going to deliver at Ohio State. And it happened to be we scheduled it, Heather Fry was going to deliver the babies. So she delivered my first, and now she's over these two. So she was pretty excited. She said she hadn't really gotten to deliver her own patients. It seems like it never worked out. She never got to deliver her own patients that she was seeing. So she actually got to deliver mine, and she delivered all of them. And it went a lot more smoothly since it was scheduled, and we decided to do C-section. It was definitely less painful. The second one I had a spinal, which I think blocked the pain completely. My first one, I still had some pain. And then they were born, and they both cried. So that was nice to hear.
Bethany Weathersby:
They were in much better shape honestly than their big brother.
Amber Landry:
They weren't even anemic when they were born. I think Nate held baby A, which was Sylvan for a little bit, and baby B was Marshall. And he was a lot smaller, which was weird. Hadn't had a measurement on their weights, predicted weights, but they were looking normal. And Sylvan was four pounds, 10 ounces, but Marshall was only three pounds, 10 ounces. I could even tell it when he came out that he looked a lot smaller than Sylvan. He was the same one that had the clotted artery in the cord. I don't know if that had anything to do with it or not.
Molly Sherwood:
Yeah, I was thinking that must've been the same. Yeah.
Amber Landry:
They went to the NICU. And I was talking to the staff too and telling them that they had to just put them under the bilirubin lights right away. They wanted to draw the labs and wait. But it was like I already talked to the doctors, and they agreed that we would just put them under bilirubin lights and start the therapy and everything now, not draw the labs and wait and see. We know this is what it's going to be. So there was some confusion. There had been some communication. They assured me that everyone knows what to do, but then there I am laying open on the table arguing with them like, "No, you got to do this. Not what you usually do. You do this this time."
Molly Sherwood:
That's so hard. Even though you tried to put so much of that in place already and get the plan there. That's part of probably what contributes to so much of the emotional burden of this is you are giving birth, but you're thinking this whole time, "Oh gosh, if I don't say this thing or remind this person just in time, it could fall through the cracks."
Bethany Weathersby:
Wow, that's such a visual of you lying open on the operating table, still needing to advocate for their correct monitoring and care. That's why you're one of the toughest women I know, and this is why it's an incredible story, things like that. I'm just so inspired by you, Amber.
Amber Landry:
Feeling's mutual. Yeah, I felt kind of lost in the NICU. I felt like I got a good handle on the pregnancy, but then I felt a little like, what are we doing and what should they be? I mean, I knew some of what they should be getting, but it just felt like a whirlwind with the NICU. And they were in a unit together for a while, and they were actually doing pretty well right off the bat. Someone told me one was going to be getting out in a week, and I believed her.
Bethany Weathersby:
Oh, wow.
Amber Landry:
I was frantically trying to get clothing I thought would fit him, but then that didn't happen.
Bethany Weathersby:
They were so tiny too. They had to eat and grow. And that's a pretty common experience suddenly being in that second major phase of the disease where close birth. And then it's like there's a new doctor. And then it's just a whole different ballgame it feels like, which I personally felt very overwhelmed.
Amber Landry:
I think too, it's like you're not getting a lot of information because when they're checking the baby and they're attached to you, you're right there. But you're not in the NICU all the time. So there's all kinds of stuff happening and information being passed around that is easy to miss because they don't know what you have been told and what you haven't been told. I found out that Marshall had a brain bleed during one of the nurse rounds. They were talking to the other staff and doing the whole, this is this baby situation. And I would just happen to be there listening to it. And they were talking about a brain bleed. And I was like, "What? Nobody has said anything about this to me."
Bethany Weathersby:
That's so scary. That is so scary. How did they treat the brain bleed?
Amber Landry:
They didn't have to. It was a grade one, which is the most minor, so they just don't typically get any kind of treatment. They did an ultrasound, and then they did an MRI. And based on the imaging, I think the brain bleed was resolved at that point. So there was nothing to be done.
Bethany Weathersby:
They just had a lot to deal with in the NICU there besides HDFN.
Amber Landry:
Oh, yeah. And they did the newborn screening and I don't know, should they do newborn screenings on babies that have had so many transfusions since it's not really?
Molly Sherwood:
I'm glad you brought that up.
Bethany Weathersby:
I think the recommendation is to go ahead and do it, but also know that the results could be incorrect. And then you have to do it again once the baby is totally clear of HDFN and they're not donor blood anymore. So they're all their own blood at that point. That's when you should do it again to double check. So did you get some weird results on the first time?
Amber Landry:
Yeah, for Marshall A, BB. They said he looked like he had lacticacidemia you can't digest lactose, and so they got that result. And they're asking do we have family history or anything? No, it's kind of a genetic condition. So they had to stop giving him breast milk because of that result, and he had to switch to totally formula. There was a different test you can have done and I don't know how it worked, but it would give us a more accurate result. But it was a special test that had to be sent off to know for sure does he really have this or not? So I really pushed hard to get this test ordered, sent off, and to find out because he was sicker than Sylvan. He was just smaller and seemed to have some other stuff going on.
And so I guess since he was just so much smaller, they were giving him all the breast milk since I wasn't producing enough for both of them. But then with that finding, he couldn't have it anymore. So I was really trying to push to get that done. It took a while and in the meantime, he developed a NEC infection.
Bethany Weathersby:
Yes, I remember. I was really scared.
Amber Landry:
And I didn't know how serious that was. I remember asking the doctor because they called me saying he had this infection. And I was like, "Well, is he going to be okay?" And basically all they said was, "Babies can do well with this." Was all they would say, and I didn't know what that meant. So I started googling it. And I was like, "Oh my God, I got to get down there." They said they can die really fast. Thankfully, he did fine. He didn't need surgery or anything. He did antibiotics and seven days, no food. He was able to fight it off.
Molly Sherwood:
Can we define neck? We probably should.
Amber Landry:
I don't think we did. It's like an infection of the intestines I believe, or stomach. But it's like a bacteria I think that gets in there, and they don't know exactly what causes it, but it's association with certain factors. But it can be managed with antibiotics, but sometimes it can get to the point where it has to have part of your intestines removed. So surgical NEC. But yeah, it's pretty common with NICU babies specifically because they're so young.
Molly Sherwood:
Is it necrotizing and intercolitis NEC, they call it.
Bethany Weathersby:
Those boys are fighters. Think about how they went through to get here.
Amber Landry:
And then eventually we got those results back saying, no, he doesn't have galactosemia.
Bethany Weathersby:
I'm so glad you pushed for that test.
Amber Landry:
Yeah, I'm glad they told me about it, but it just seemed like they were in a hurry to get it done. And I was like, "We need to get this done and ASAP."
Bethany Weathersby:
Yes.
Amber Landry:
That was just some of those weird stuff that came out. I was like, "Would he have gotten NEC if he had not had the formula?" But apparently NEC is also more common in babies that have received blood transfusions. And he had received some at that point. So it could have been multiple factors.
Bethany Weathersby:
I forgot about that. My son, Callum, who was also born at 34 weeks. Also, he had a blood transfusion, and then he had a horribly bloody diaper. And they told me the same, they said, "We think it's NEC, and there's a 50% survival rate." Is what I was told. And I was just like, what? And then we figured out it was actually a dairy and wheat allergy, so thank goodness. But they had said, "Well, usually at 34 weeks we don't see this often, but we're worried because he had that blood transfusion." And how were you doing emotionally at that point, Amber?
Amber Landry:
It's hard to know. I think I was just trying to keep going until they could get out of the NICU. It was hard because when Marshall developed NEC, he had to move down to a different unit. They had both moved to the lowest level NICU, and seemed like they were about to be discharged. But then we had the infection, he had to go to a step-up unit and he had to be treated. And so, the hospital would only let one of us go per day. Me and my husband could not go on the same day, even though they were twins. They were limiting visitation because of COVID. But I was like, well, they are twins, and they're in different units at this point. So I'm trying to get back and forth between them. And a couple of times I came in, I had to be pushed in a wheelchair because I was recovering from a C-section, and it was just too long of a walk to go from one end of the hospital to the other on top of trying to pump and everything and wash the pump parts.
So it was just very draining. And when you're in the NECU, I don't think there's any windows. And you don't know if it's daylight outside or what. You come outside and you're like, whoa, the world. It's just air conditioning and dark and closed. Not a fun environment to be in.
Bethany Weathersby:
It feels like another world.
Molly Sherwood:
And it sounds like even listening to you talk about it that I'm sure it'd be this way too, your memories are kind of selective. I mean, it was probably just an extremely stressful time. And I'm sure there are so many pieces that they're not in your mind anymore.
Amber Landry:
Yeah.
Molly Sherwood:
So how does this journey equate to their personalities now? Are they just total savages now?
Amber Landry:
I know. You come to my house, and there's three wild boys running around because when they were born, Walden wasn't quite three. So I remember making a post. I have three under three. We don't sleep. It was funny when Marshall was born, he was so lethargic and subdued. And I was like, "Oh no, I shouldn't have named him Marshall. He doesn't fit that at all. I should have had him, Sylvan and the other one, Marshall because he screams all the time because he had the reflux." But then they flip-flopped. And Marshall's real, just outgoing and jumping around. And I don't know. He seems more like a Marshall personality now. And Sylvan seems like a Sylvan.
Bethany Weathersby:
So wait, they're older because August was also born in 2020, but later in the year. So they are three now.
Amber Landry:
Yeah.
Bethany Weathersby:
Are they three? Wow. I'm just so grateful for their lives, all three of your boys. It's amazing. And I wanted to point out, going back to what Molly was saying earlier about the factors that contribute to survival when it comes to severe disease, or probably HDFN in general. And I see so many of the reoccurring factors in you, Amber, that we often see when these severely affected babies have fantastic outcomes. And I just wanted to point those out. Can I list them really quick? Because this is part of the reason why I really believe why your boys are alive and why I'm so inspired by you. While you're an incredible advocate for your children and yourself, and I feel like, I don't know, maybe you having the TTP primed you for that ahead of time to give you that, I don't know, I guess knowledge that you needed to be an advocate and the courage to do that.
But you also, you were connected to other Allo immunized women, and I guess that happened because you took the initiative and you reached out online, you did your research, you learned about the disease and educated yourself. And you were brave enough to just ask a ton of questions and reach out to these strangers on the internet and talk to me on the phone. You don't know me. And I know that was really hard probably. Also, you were courageous enough to switch doctors when you needed to and travel when it was necessary. And you got all of that medical information. You kept track of the details. And all of this, I think contributed to your children's survival and healthy outcome.
Amber Landry:
Yeah. I definitely think it was 100% helped. I just don't know what would've happened if we had stayed with the doctor that wasn't very experienced. It just was such a unique circumstance at 16 weeks twins, you just really needed, someone experienced. I wasn't going to be a good learning project. I feel like something bad would happen, either losing the pregnancy or having to deliver the babies so early. I think one of those things may have happened if I hadn't sought out more experienced people to help me.
Bethany Weathersby:
Yeah, for sure. That was also a huge factor, is having the right doctor doing all those procedures and managing such a difficult pregnancy. And we're so thankful that you shared your story with us today and your wisdom too. I think the listeners will really gain a lot into your story, so thank you so much.
Amber Landry:
I was just going to say thank you guys all for your time and organizing this. Really appreciate it. I think you're doing great work.
Molly Sherwood:
Thank you.
Amber Landry:
Helping so many people.
Molly Sherwood:
That's the goal, hopefully. Okay, should I do my sign-off while we have screaming?
Bethany Weathersby:
Yeah, do the sign off. Well, I don't know. Just do it. Just do it.
Molly Sherwood:
Whether you are a patient, provider, or otherwise affected by antibodies in pregnancy, we are here for you. We have great resources on our website at Allohopefoundation.org. That's Allo spelled A-L-L-O Hope foundation.org.
Bethany Weathersby:
The Allo Podcast is a production of the Allo Hope Foundation. It was researched and written by Molly Sherwood and me, Bethany Weathersby. It's 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.