Welcome to the Allo Podcast! This episode introduces our hosts, Bethany and Molly, our recurring guests from our Medical Advisory Board, the Allo Hope Foundation, and most importantly the diseases known as Maternal Alloimmunization and Hemolytic Disease of the Fetus and Newborn. Get the quick facts on how to monitor and treat this disease and how Bethany, Molly, and so many moms have used these treatments to deliver healthy babies.
Welcome to the Allo Podcast! This episode introduces our hosts, Bethany and Molly, our recurring guests from our Medical Advisory Board, the Allo Hope Foundation, and most importantly the diseases known as Maternal Alloimmunization and Hemolytic Disease of the Fetus and Newborn. Get the quick facts on how to monitor and treat this disease and how Bethany, Molly, and so many moms have used these treatments to deliver healthy babies.
Episode themes:
Terminology used in this episode:
Allo Hope Terminology Library https://allohopefoundation.org/library/terminology/
Guests: Dr. Ken Moise https://partnersincare.health/directory/kenneth-moise
Dr. Thomas Travett http://www.georgiaperinatal.com/dr-trevett/
Links mentioned in this episode:
Partners in Care HDFN Definition: https://partnersincare.health/conditions/hemolytic-disease-of-the-fetus-and-newborn
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
Bethany Weathersby:
The information shared on the Allo Podcast is not intended as medical advice.
Molly Sherwood:
Your medical care decision should be made in consultation with your physician who is familiar with your specific case.
Bethany Weathersby:
Hi. Welcome to the Allo Podcast from the Allo Hope Foundation. I'm Bethany Weathersby.
Molly Sherwood:
And I'm Molly Sherwood.
Bethany Weathersby:
And we're doing a podcast.
Molly Sherwood:
We are.
Bethany Weathersby:
Yeah. So-
Molly Sherwood:
I can't believe it. I wonder-
Bethany Weathersby:
I know.
Molly Sherwood:
Do you think we're interesting enough for this? I'm not sure.
Bethany Weathersby:
I think we are. I think we have some good things to share.
Molly Sherwood:
I think so too. Let's see how it goes.
Bethany Weathersby:
Yeah. I'm excited. And we have really great guests coming up too.
Molly Sherwood:
Yeah. We really do.
Bethany Weathersby:
Okay, since this is our very first episode. I guess we need to introduce ourselves, and the foundation, and the podcast.
Molly Sherwood:
Yes. Let's start there.
Bethany Weathersby:
Okay.
Molly Sherwood:
Do you want to start with the foundation?
Bethany Weathersby:
Sure. The Allo Hope Foundation is a non-profit organization that was created to provide support, advocacy, and education for patients and providers dealing with maternal alloimmunization, and hemolytic disease of the fetus and newborn. We're also, of course, doing our best to promote research and improve healthcare practices for the condition.
Molly Sherwood:
Yes. And we're going to dive in to all of those definitions. And that's part of the goal of the podcast. It's one of the ways we're hoping to accomplish these things. And I feel like one of the critical things is even though we're a patient advocacy organization. And so, a lot of our things are patient-facing. This podcast is for everybody affected by this disease, including patients, clinicians, advocates, non-profits, families, and friends who have heard of this condition through somebody who has it, and want to support them. It's just critical that the whole community can develop an understanding of this disease because it's rare, it's confusing, and I think that once we just broaden awareness across all of those groups, we can have an elevation in the standard of care, which is our goal.
Bethany Weathersby:
And I know that in my experience, I learned so much about this disease just from hearing and reading other patient stories. And just watching the whole pregnancy play out, and then seeing the outcomes. So, hopefully we can bring that to every listener as well.
Molly Sherwood:
And your perspective too is so valuable. You were an alloimmunized patient before I was. And I learned about you, and your story when I was seeking counsel, and advice, and education. So, why don't you introduce yourself?
Bethany Weathersby:
Okay. Well, I'm Bethany, like I said earlier, and I'm the founder and executive director of the Allo Hope Foundation. But even more importantly, like you said, I'm a patient myself. I have anti-Kell antibodies and anti-Jkb antibodies. And the level of the Kell antibodies is extremely high. So, I had really severe disease with all four of my alloimmunized pregnancies, and three of those babies survived, and are totally healthy, doing great, and one did not survive. And I will, of course, share more details about all of those pregnancies in future episodes, but I'm just so excited to be here and be doing this podcast. Okay, tell me about you.
Molly Sherwood:
All right. What's about me? I am the director of research for the Allo Hope Foundation. So, I'm just a nerdy person who likes to talk about science and research, and design studies, and do some writing about it. So anyway, throughout the podcast, I usually interject and just tell some cool facts or at least things that I think are cool from what we've learned in the literature, and what we see in patients. And also more importantly, I am also an alloimmunized mother. I have anti-S and anti-E antibodies, and I am fortunate enough that my pregnancies had very low antibody levels, and I did not need intervention in my pregnancies. But what I learned during my journey helped to empower me, to keep my kids safe. And I'm forever grateful for what I've learned throughout. And I think that you and I both are really excited to just share everything we can to empower the entire community about this disease.
Bethany Weathersby:
Yes, definitely. And I will say, you did need a lot of monitoring even though... I mean, you didn't technically have intervention, but you still had to really stay on top of things and make sure you were receiving the right monitoring. So-
Molly Sherwood:
Definitely.
Bethany Weathersby:
... I am excited about hearing more about that later. So, I guess let's introduce our amazing doctors. This season, we have two incredible physicians who will be sharing their expertise with us in multiple episodes throughout the season. And their names are Dr. Ken Moise and Dr. Thomas Trevett.
Molly Sherwood:
I can start with Dr. Moise, because this is our chance to tee them up a little bit since we'll be hearing about them throughout. So, I probably still won't do it justice, but Dr. Moise is a maternal-fetal medicine specialist. That's an MFM. And those are the doctors who, in the U.S, treat our condition. He is recognized worldwide for his contributions to our disease, to maternal alloimmunization and HDFN. And he's even developed some of the monitoring and treatments that we now use in daily practice for our condition. He has founded three previous fetal centers, the Center for Maternal and Infant Health at the University of North Carolina, Texas Children's Fetal Center in Houston, and The Fetal Center at Children's Memorial Hermann Hospital at Houston. And he was unsurprisingly awarded the Lifetime Achievement Award by the Society of Maternal Fetal Medicine for his work in this disease, hemolytic disease of the fetus and newborn. He currently serves as the principal investigator for a currently ongoing international clinical trial for treatment of this condition too.
Bethany Weathersby:
Nice. That was a really long list. And that wasn't-
Molly Sherwood:
Yes, it was.
Bethany Weathersby:
... even everything.
Molly Sherwood:
No.
Bethany Weathersby:
We actually cut out some of his accolades, because he's just incredible.
Molly Sherwood:
Yeah.
Bethany Weathersby:
I love that Dr. Moise has been treating women with this disorder for decades, because so many doctors don't often treat this disorder, because it's rare. And he has literally decades of experience treating us patients with this disorder. And he did treat me during one of my pregnancies, and that baby is now a healthy six-year-old. And I loved having him as my doctor. So, the other doctor we have on the show is Dr. Thomas Trevett. And he is an MFM as well, like Dr. Moise. And he is at Georgia Perinatal Consultants in Atlanta. He was actually trained by Dr. Moise at the University of North Carolina Chapel Hill, where he completed his fellowship in maternal-fetal medicine.
Bethany Weathersby:
And another interesting thing about him is that he won an award for this great research he did on phenobarbital as a maternal treatment to reduce the rate of exchange transfusions after birth in babies with HDFN. And I actually used this treatment with two of my HDFN babies, and it really helped them need less intervention after birth. So I-
Molly Sherwood:
It's so cool.
Bethany Weathersby:
Yeah. I just appreciate both of these doctors so much for the way that they care about women with this disorder and babies as well. And yes... I don't know if I said this earlier, but Dr. Trevett treated me during my last two pregnancies. And actually, one of my sons is named after him. My son is named after Dr. Moise and Dr. Trevett. But-
Molly Sherwood:
They're such inspiring guys.
Bethany Weathersby:
They are. They really are.
Molly Sherwood:
It's just so cool. They're perfect examples of just how a wonderful patient-provider relationship can be. And I think it really comes out when we include their clips and things like that. So, I'm excited to share about that.
Bethany Weathersby:
They're also on our Medical Advisory Board at the Allo Hope Foundation, so they are leading the way in what we do.
Molly Sherwood:
Yes. And they're so collaborative with our patient board, and with us, and with design research. We have just an awesome thing going. We were so lucky.
Bethany Weathersby:
Yeah. So wonderful.
Molly Sherwood:
Okay. Let's talk about the disease.
Bethany Weathersby:
Okay.
Molly Sherwood:
We'll try our best. We're talking about maternal alloimmunization, which... Why are you... Our producer-
Bethany Weathersby:
We're just-
Molly Sherwood:
... is laughing. Why is that?
Bethany Weathersby:
I'm laughing too, because the words that even just describe-
Molly Sherwood:
I know. I know.
Bethany Weathersby:
... the disease are insane.
Molly Sherwood:
Let me just say, this is the disease. It's called maternal alloimmunization and it causes hemolytic disease of the fetus and newborn, which the abbreviation is HDFN. And when you and I were talking about how we were going to even explain this disease, we said, "Okay, let's just find a reputable quote of some source that we trust, stating what the disease is." And it was very difficult, because anything-
Bethany Weathersby:
It was.
Molly Sherwood:
It's super convoluted. So anyway, we did end up pulling a quote from, actually, Dr. Moise's fetal center website. So, I'm just going to read their description. And then I thought, you and I could riff off of it and share how we describe the disease to other people too, when they ask. And then hopefully, one of the three of those options will be useful. So, we'll just see.
Bethany Weathersby:
Yes, that sounds good.
Molly Sherwood:
Okay. So his website says, "Hemolytic disease of the fetus and newborn, HDFN is a blood disorder in a fetus or newborn that develops when the pregnant mother's antibodies pass through the placenta during pregnancy and attack the baby's red blood cells. Breaking down the baby's red blood cells at a rapid rate and causing the baby to become anemic. The formation of antibodies in the pregnant mother in response to a fetal antigen is known as alloimmunization." How do you describe it when somebody asks you what it is?
Bethany Weathersby:
It takes a lot of words to describe this condition, especially when it's a condition that has two separate names.
Molly Sherwood:
Yeah, it does.
Bethany Weathersby:
And two different sides to it, which is the mom and then the baby. Okay. What do I say when people ask me about my disease? I usually really simplify it and say, my husband has a blood type that's different from mine. And so, our kids also have his blood type which is different from mine, and my body saw their blood as something foreign like a disease or an infection, and my body had an immune response and created antibodies specifically designed to destroy that blood type. It's almost like I was vaccinated against my husband's blood type. So I'm like, well-armed with these antibodies, ready to kill that blood type, and then I got pregnant with babies who had that blood type.
Bethany Weathersby:
So obviously, you can see there's a problem there. And then yes, my antibodies attacked the baby's blood while I was pregnant and made them anemic, and that was the danger there. And so, that's my basic definition of it. And then also, I also say, pretty much when they're away from my body, the problem is the environment that they're in. They're fine, but it's just when they're in my body, they're in danger, because they're in a hostile environment. And so, after birth, when they're removed from it, then they're fine, and they don't have to think about this disease ever for the rest of their life.
Molly Sherwood:
And isn't that so lucky?
Bethany Weathersby:
Yeah.
Molly Sherwood:
It's still-
Bethany Weathersby:
Yes.
Molly Sherwood:
We're very fortunate that this is a rare and serious condition, but it's something that resolves.
Bethany Weathersby:
Yes, yes. If you are given the right treatment. So-
Molly Sherwood:
Yes.
Bethany Weathersby:
That still was really long, wasn't it?
Molly Sherwood:
Yes. But it was really good. I don't think I can top that. I feel like I say the same thing. It's basically that my body has developed an immune response to my baby's blood, it's essentially what it is.
Bethany Weathersby:
Right.
Molly Sherwood:
But how does that happen? Let's talk about how women develop this immune response. How do women become alloimmunized, which we also call being sensitized.
Bethany Weathersby:
Okay. So, how do we get sensitized? There's two main ways, which is basically... Like we said, you're being exposed to a blood type that's different from your own. So, the two ways that happens is through a pregnancy where you're pregnant with a baby that has a different blood type or you receive a blood transfusion that wasn't matched to your blood type perfectly. And so, in both of those ways, you are being exposed to a blood type that's different from your own.
Molly Sherwood:
Yeah. So, this is why a lot of times you hear about the condition occurring in a woman's second, or third, or so pregnancy because the whole crux of it is, your body needs to meet some blood that's not their own. So, that would be like you said, through transfusion or through a previous pregnancy when you're pregnant with a baby that carries the father's blood. So, that's why, typically, this occurs after a woman has been pregnant once or if they've had a transfusion.
Bethany Weathersby:
But I've noticed in our patient population that a lot of women who are sensitized through the transfusion, they had that blood transfusion as a result of some type of birth trauma. Wouldn't you say?
Molly Sherwood:
Yes, yes. I would say that. It's interesting because there's research out there about... They call it sensitizing events, what triggers this response. And it is a lot of times traumatic things in pregnancy. It's having a bleeding event while you're pregnant. It's having an external cephalic version where if your baby is breached and you try to twist the baby around in your tummy, having a C-section falls, and being injured during your pregnancy, those things are traumatic. And that is what can create a blood sharing experience where your blood sees the baby's blood, and then you could develop the disease.
Bethany Weathersby:
Yes. And then also, the blood transfusions women are receiving a lot of times are after giving birth. They need blood.
Molly Sherwood:
Yes.
Bethany Weathersby:
Okay. Now that we know how a woman develops these antibodies, I just want to give a quick little list of some facts that I want listeners to know. First of all, this is a treatable disease and it is temporary. And I think we mentioned that before, but I just want to repeat it, so people understand that it is treatable and it is temporary. And that is really encouraging.
Molly Sherwood:
Yeah. And if I can interject on the treatable part. While it is completely treatable, it is rare. And so, it is a lot to expect any practitioner to know exactly how to treat every rare condition. So, that makes it so important for anyone listening to familiarize themselves, and enter into partnerships that include patients and doctors on equal footing to build the proper treatment for them so that they can get that treatment, because it is not a given that they will receive the best standard of care even in wonderful practices with wonderful doctors, in the U.S. even.
Bethany Weathersby:
Yes, absolutely. And in my own case, I had Kell4 pregnancies and one baby did not survive, because I did not receive the right treatment. And the three others, I received phenomenal treatment, and they're totally healthy today. So, since you are on this topic, do you want to go ahead and tell us what the prevalence is? How common is this disease?
Molly Sherwood:
Yeah. Okay. Good point. So, it is rare. And I think that the percentages that have been published recently are that this occurs in about 0.4% of pregnancies. So, less than 1% of pregnancies does this occur.
Bethany Weathersby:
Wow.
Molly Sherwood:
Yeah. It's super uncommon. And our doctors will also say that most obstetricians, and even high risk MFMs only see a couple of these in their lifetime.
Bethany Weathersby:
Okay. So, the other things I wanted to list really quick is that if you have these antibodies, you will have them for the rest of your life. It's just now a part of your body's immune system. And also, there are several different names people use for this disease. And we already gave, I think we said, we mentioned red cell alloimmunization, maternal alloimmunization, and then HDFN, Hemolytic Disease of the Fetus and Newborn, but sometimes it's called Rh disease, and sometimes it's called isoimmunization. And-
Molly Sherwood:
I think that's it, the Rh disease thing. We can go into that more. It's a little antiquated. It's talking about what used to be the most common type of this disease, which was alloimmunization to the D antigen. So, I know we'll talk about that more later.
Bethany Weathersby:
Okay, okay. Let's just start in on that, how it works. And we will try to keep these definitions clear and basic, but we will also provide in the show notes definitions to all of the terms that we mentioned in the episode.
Molly Sherwood:
Yeah. I think that's super helpful.
Bethany Weathersby:
Yeah. So, we have said the word antibody already, and we have said the word antigen. And these two words are very similar, and they get mixed up easily even in healthcare settings. So, I just want to clarify what those two things are and why they're important for this disease. So, first of all, they're like opposites. If you have the antibody, you can't have the antigen. So, let's just explain what an antigen is before we go any further. And antigen is just a protein on the surface of a red blood cell.
Molly Sherwood:
Everybody's blood type is actually defined by their antigens. There's 50 antigens actually that can create this disease. That includes things like ours, E, S, Duffy, Kell, M, Kidd. There's a ton of different antigens that live on every red blood cell. And what's happening with us is that our body is seeing these antigens usually on our baby's blood or in blood that is transfused into us, and it's not the same as our antigens that are already on our red blood cells. So, if it doesn't match our antigens, then our body is like, "Whoa, this must be bad. I'm going to make antibodies that are designed to match that antigen." So, if I am exposed to blood that maybe has the big E antigen on it, and I don't have that antigen in my blood already, then I might create an antibody to Big E, so that means I have anti-Big E. So, they do correspond antibody to antigen, but they're different. The antibody is what we have generated. The antigens are totally normal thing that exist on every red blood cell, but we're talking about having an antibody response to a corresponding antigen.
Bethany Weathersby:
Yes. And then, again, that antibody is designed to destroy that blood cell with that antigen on it only.
Molly Sherwood:
Right.
Bethany Weathersby:
So, that's where the babies have some risks is, if they have that blood type and your antibodies are designed to destroy their blood, basically. I just want to say, you cannot have the antigen and the antibody at the same time in your own body. So, with this disease, in the mother, you're looking at antibodies. And one way to remember that is antibodies are in the mom's body, and then the dad or the father of the baby, we're looking at the antigen which is in the gentleman. So, that's-
Molly Sherwood:
I like that.
Bethany Weathersby:
... when the antigen is in the gentleman. So, that's just a way to remember the two different things. And then of course, the dad might pass down that antigen to the baby. Remember, we were like, we don't want to have the baby with that antigen on it inside the mom's body that is armed to destroy that blood type. And so, that's why this is really confusing, but it's such an important part of the disease that we have to share it.
Molly Sherwood:
Yeah. It's really a fundamental part of understanding it, because when you can picture your antibodies attacking the corresponding antigen in your baby's blood, you can understand how this can have an effect on your baby. Your baby is losing their red blood cells.
Bethany Weathersby:
Yes, yes. Absolutely. So, my husband has the Kell antigen and then I don't. So, I created anti-Kell antibodies. And then for some reason, all of my babies have Kell antigen positive blood. And so, they were all in danger.
Molly Sherwood:
I should just say, it's not like it's a given that the moment you're exposed to foreign blood, you're going to develop these antibodies. And that's why this is rare. It doesn't happen often, but it's just something bizarre in transfusion medicine and immunology. It's just a response that your body can have. However, we should say, this is usually when we're explaining this to somebody, they say, "Oh, what about RhoGAM? Can that fix this disease?"
Molly Sherwood:
I'll touch on RhoGAM briefly, because it is a very important preventative measure. So, RhoGAM is an injection that women who have a negative blood type get during their pregnancy. And it actually helps to prevent them from developing antibodies to anti-D. That's just one antigen, but it is the most common antigen that before RhoGAM was developed, most cases of this disease were to anti-D. So, RhoGAM can prevent you from developing D antibodies, if you have a negative blood type. So, it's a critical intervention to help lower the incidence of this disease. If you have a negative blood type, RhoGAM can help prevent the development of this condition. But, it does not prevent the development of this condition in other antibodies, any of the other small ones we were listing. Kell, or Duffy, or S, or whatever it may be.
Bethany Weathersby:
Yes. So, you and I both, we did not have a chance to prevent our disease because we have a different antigen that's not anti-D. And I would have loved to have been able to just prevent this with a shot. My babies suffered so much, and again, I have an extreme case, but if I could have prevented this with RhoGAM, I would have just loved that.
Molly Sherwood:
Mm-hmm. And that's why this is the standard of care, at least in the United States and developed countries. It's unfortunately not as accessible in other countries sometimes, but it's common. If you're pregnant, your blood type will be checked. And if you have a negative blood type which means you do not have the D antigen, you get RhoGAM, and that helps to prevent this.
Bethany Weathersby:
Yeah. My sister actually has a negative blood type. Her husband has a positive blood type. She just had RhoGAM and had three healthy babies, no complications at all.
Molly Sherwood:
Yeah. Wonderful.
Bethany Weathersby:
Okay. So, do you want to go ahead and talk about the risks?
Molly Sherwood:
Okay, yeah. So, in terms of risks to the mom. The only risk to the mom for the rest of her life, pregnant or not, is the possibility of a transfusion reaction. If you get a blood transfusion that has the antigen that your antibodies attack. So for the mom, it's just important that you consider having a medical alert card or a medical alert bracelet, or nowadays on your phone, you can list any medical alerts and make sure your partner or people who you're with often know that should a transfusion ever be needed, you have an antibody or multiple antibodies, and that needs to be considered before you receive a blood transfusion. But otherwise, that's the only thing that directly affects you. It doesn't make you feel sick. There are no symptoms of having antibodies.
Bethany Weathersby:
That's very comforting to hear. And a few years ago I've had ankle surgery, and my surgeon went ahead and ordered blood to be on hand, just in case I needed a blood transfusion, just because I have anti-Kell antibodies, and the antibody level is so high. So, even though it's very unlikely I would need a blood transfusion for an ankle surgery. He still was like, "I'm going to be very careful and have this ready just in case." And that made me feel really safe. So, always tell your doctor as well, of course.
Molly Sherwood:
Mm-hmm. Right. And what about the risk? Most importantly, what is the risk to the baby in this instance?
Bethany Weathersby:
Yeah. So, that's where most of the risk lies. It's to the baby in utero, because again, the moms' antibodies are trying to destroy the baby's red blood cells. And if you don't have enough red blood cells, you become anemic. So, untreated anemia can then become something called fetal hydrops. And when that happens, there is fluid building up in the baby's organs, often in their abdomen, their brain, or under the skin, or other areas. And then, that can turn into heart failure, heart damage, and then death, which is what happened to my daughter. But all of this only happens if it remains untreated. And so, yes, just a reminder that there is treatment even in utero for babies who become anemic. And so, Molly, what are the risks to the baby after birth? Because a lot of babies do not need intervention during birth, but they're still affected and need some help after birth.
Molly Sherwood:
Yeah. So, after birth, what tends to present most often is high bilirubin. That's the thing that a lot of us associate with those blue lights that are on babies in the nursery, to help reduce the high bilirubin. Jaundice, anemia, kernicterus which is brain damage as a result of high bilirubin, which again, leads to brain damage and can also lead to death if untreated. And again, reinforcing that these things happen only when the treatments have not been properly introduced.
Bethany Weathersby:
So hopefully, we can help women know exactly what treatment should look like, and then be able to advocate for that care so that they can also have healthy babies like Molly, you and I were able to have. We introduced Dr. Ken Moise earlier, and we want to hear what he has to say right now about the risks associated with HGFN, and just the likelihood of those risks. And then also, the outcome for women and babies who do receive the right care.
Dr. Ken Moise:
If we think about it, the baby is totally normal. This is just a baby that happens to be the wrong blood type. That's the only thing wrong with this baby, is it inherited a blood type different from its mothers. But genetically and structurally, it's a normal baby. Now, depending on the severity of the disease, the pregnancy may go along unabated and there may be some jaundice issues in the nursery or the pregnancy could be severely affected and require some procedures. In that situation, survival rate is a little bit lower, but we're still talking 95% survival with proper treatment. They just happen to be the wrong blood type.
Molly Sherwood:
I love how he shares it that way, that there's nothing wrong with the baby. They just happen to inherit a blood type that our body does not like. So, that's really encouraging.
Bethany Weathersby:
Mm-hmm. Yeah.
Molly Sherwood:
But it makes it all the more critical for us. And this is what we see in our advocacy work, because things can be done, because women can have healthy babies with this condition. When we don't see that, it is crushing. Because this is rare, and most doctors don't have the opportunity to become experts. We urge our patient-base, and advocates, and the whole healthcare community to just enhance their awareness of the condition so that we can, hopefully, have universal positive outcomes for this disease, which are possible. But they're currently not happening.
Bethany Weathersby:
Yeah. That's the core of what we want to do with our organization.
Molly Sherwood:
So, let's talk about if you're alloimmunized or if you're talking to somebody who's alloimmunized, how their pregnancy might be monitored? These are just some words that will crop up and some things to maybe expect in a treatment plan for this disease. So, the first one that always comes up is titers. Once a woman finds out that she has an antibody, a red cell antibody, and by the way, that usually occurs during the first trimester blood screen. I think most women recalled their first prenatal appointment, they'll have blood drawn.
Molly Sherwood:
And at least for me, you don't usually hear even what it is or what the results were, but the standard of care is actually during that time women are checked to see if they have these red cell antibodies. So, if it comes up positive for a red cell antibody, the next step is to get the titer. And the titer is just a measurement that shows the amount of antibodies in your blood. And that helps doctors know if the antibody levels are getting high enough to possibly affect the baby. So, once that happens, if they get to a critical level, then we would want to initiate the next monitoring stage, which is a special ultrasound called the MCA Doppler ultrasound. And I know you've had a bajillion of these Bethany, so why don't you explain what those are?
Bethany Weathersby:
Okay. So, we usually call them MCA scans. And that just shows if your baby is anemic or not. And MCA stands for Middle Cerebral Artery, which is just a big artery in your baby's brain. And so, the ultrasound is measuring how quickly your baby's blood is flowing through that artery. And they know that if the blood is flowing too quickly, it means the baby is probably anemic. And then, that's when they can provide treatment for that fetal anemia.
Molly Sherwood:
Mm-hmm. Yeah. And then after birth, basically all the monitoring is done through blood tests on the baby. So, tests for bilirubin levels, anemia, tests to show if the baby has been affected by the mom's antibodies. There's a test called the direct Coombs test, which checks to see if there are antibodies attaching to the baby's blood cells. And so, that helps us understand the severity of the disease in the baby after the baby is born. Let's talk about how this is most often treated. So, how do you treat the condition?
Bethany Weathersby:
Okay. Yes, and I received treatment during the pregnancy, and when they see that the baby is anemic, they can do a blood transfusion on the baby in utero, which is-
Molly Sherwood:
Crazy.
Bethany Weathersby:
... so crazy. But experienced doctors can give the baby and utero blood when they need it. And so, that's how they treat the anemia. And there are some preventative treatments to delay the onset of fetal anemia. And we will talk more about those in other episodes. Those are called the plasmapheresis and IVIG, and then there is a clinical trial happening right now for another possible preventative treatment. And we will, again, share about those later. But, yeah. That's how they treat it. You can prevent or delay the anemia, and then you can treat it with a blood transfusion in utero, and those are called intrauterine blood transfusions or IUTs.
Molly Sherwood:
Yes. We throw around IUT all the time, because it is definitely the most common intervention in utero. And then after birth, what's most common is a baby needing phototherapy to help with their high bilirubin levels, which is the lights I was talking about with the new nursery beds, and a blood transfusion to the baby after birth. And there's also some supportive infusion therapies that can be given to babies to help enhance their ability to create new blood cells and to process the antibody-attacked blood cells too like IVIG, which we'll talk about too.
Bethany Weathersby:
Perfect. It's just a relief to know that there are treatment options.
Molly Sherwood:
Yes, definitely.
Bethany Weathersby:
And I do also want to say that most women do not have to have intervention during their pregnancies. You should always monitor closely in case they do, but it's very likely that if you're a patient, you will get through your pregnancy without needing treatment, hopefully. So that's the basic, I think, medical information. But there is a part of the disease that's super important, just as important as the medical info. And that is the patient's experience and their... I guess, advocacy or...
Molly Sherwood:
I think it would call it that.
Bethany Weathersby:
Okay. Like we mentioned, this is a rare disease and that means, doctors rarely treat it. And so, like you said earlier, they don't have an opportunity often to become experts in treating this disorder. And so, that's why patients really need to understand what's happening in their body, what's happening in their baby's body, and then how to treat it, and how to advocate for that care, and know how they can make sure that they're receiving it. So, we asked Dr. Ken Moise to share what he thought was the most important thing for newly diagnosed women to know.
Dr. Ken Moise:
What they need to know is that when we detected antibodies, it could be D, it could be Kell, it could be little c, it could be any number of antibodies. They need to have a titer perform. They need to know how much antibodies in their system, because that's the first step to decide. Is this just mild? And we're not going to be too concerned, we're just going to keep following titers or is this a significant problem already? Because it makes a difference in treatment. And then I think they need to educate themselves. Women today are educated, and for all the bad things the Internet's done, it's done a lot of good things. People can get information, find out about their disease, get educated, ask good questions, take control of your healthcare, and figure out, is this really what should be happening? This has become a rare disease.
Dr. Ken Moise:
And the average obstetrician now may see one or two of these in their entire career. And so, the first thing that newly diagnosed woman should say is, "Shouldn't I be seeing a high risk obstetrician." "Shouldn't I be referred to a maternal-fetal medicine person who's board-certified in high risk OB. And then you've got a much better chance of getting the correct information and the correct treatment. But even then, we still have some gaps in knowledge in certain places where they may not know the latest and greatest. Then, go get educated. Find out what this is about. Your website, the Allo Hope Foundation is a place to start gaining knowledge, ask questions. That would be the best thing I could tell a newly diagnosed patient, ask questions. You are the best advocate for that unborn child to get the best of care, just as you would take that child to an emergency room in a heartbeat if something looked wrong. Well, this is an unborn child inside of you, be an advocate for that child and get to the right people to get the best care.
Molly Sherwood:
I love his analogy. You would take your child to the ER. It's the same concept. You are your baby's voice at this time. And so, your own education is critical. And it's surprising, but so good when a doctor encourages his patients to read up on their condition. Because we've harped on, and again, and again, this isn't the same as bringing your kid to their pediatrician for a sore throat, which they see day in and day out. And of course, if it's a pediatrician you trust, you can always lean on them in their advice.
Molly Sherwood:
But when doctors have so many different directions they're being pulled in, and they may see only one or two patients like us, it's all the more reason for us to enter in a collaborative relationship with them, and start doing our own research, and bring these things to them, ask them questions. And finding a humbled, collaborative, passionate doctor who feels that way about his relationship with his patients is I think more critical than finding a doctor who knows absolutely every single answer. And I think we notice it totally, and just hearing Dr. Moise talk, but also I see it woven through Dr. Trevett's language too. And we asked him the same question. What did he want newly diagnosed patients to know? So, I want to listen to that.
Dr. Thomas Trevett:
Their job as a parent truly has begun at that time. Their job as a parent who needs to be proactive and to be educated, either through their interaction with their physician or their interaction with the Internet, and reading online about different experiences that other patients have had. And also trying to read a little bit about the disease process on their own is, in my opinion, a responsibility that a patient has. The doctor certainly has the responsibility of making sure that the patient understands this issue, but I do think that there is some responsibility also on the patient's side to understand it to the best of their ability to be a parent, and to make sure that their child is protected, and to make sure that their child is receiving what he or she needs. And so, they need to be educated about the disease itself.
Dr. Thomas Trevett:
They need to be educated about the physician that they're seeing. They need to make sure that they're asking the right questions of the physician. And also, if they don't feel that they're getting the right answers to investigate the possibility of finding the physician that understands the disease process and the therapies needed. Because again, I think that it's rare enough that many of the physicians who do what I do, don't ever see this problem, and don't have any experience or expertise at doing procedures in utero. And so, they really should find, at least, within reason the person who can offer their child the best opportunity of a healthy pregnancy and a healthy birth.
Bethany Weathersby:
That's great info and a good reminder of the responsibility we have as parents. And also, I just wanted to point out that throughout this experience with this disease, women will see several different specialists, the OB, the MFM, the neonatologist pediatrician, hematologist, and the one constant between all of those people is the woman. She's going through all of these specialists and she is her baby's voice. And so, I think that's really good to remember that we have the responsibility as parents to learn about everything and speak up when we need to.
Dr. Thomas Trevett:
Absolutely. And I definitely want my patients to speak up, to let me know when they have concerns, and really want to know more or want specific things done in specific ways, because they feel that's necessary and safest for their child. And certainly I'll try to honor that within reason again.
Bethany Weathersby:
Wow. It is so empowering as a woman to hear a doctor say that I have permission as this baby's mom to speak up and say, what type of care I want them to receive. And it's also empowering to hear him say that I deserve to know what's happening with my own condition. This is my disease and my baby's disease. It's just nice to hear that a doctor thinks that I also deserve to know what's going on. And so, often in healthcare settings, I think women feel like they are not capable of... I guess, speaking up or having their own clear opinions and voicing those. And then also, sometimes, at least for me, doctors have given me the feeling that I don't have the capacity to understand a complex and rare disease because I'm just the patient.
Bethany Weathersby:
But there are some amazing doctors out there like Dr Trevett, and Dr. Moise, and many others who treat their patients as equals, and then allow patients to make decisions about their own treatment, and their child's treatment. And if you don't feel like your questions are being answered or you aren't receiving the right care, go get a second opinion, find a doctor who can provide those things. And this is a really big part of the Allo Hope Foundation's core values. Reminding women that they have autonomy over their own bodies, and they make the final decisions about their baby's medical care, and their own medical care.
Molly Sherwood:
That's so true. And another thing, this makes me think about, just wanting to reflect on what is happening in the average alloimmunized mom's brain while she's going through this pregnancy. I hope that if a patient is listening to this, they feel like we are empathizing. And I also hope that if a support person, or a clinician, or an advocate is listening to this, they can get a sense for what we may be experiencing because... I'll just take a stab at explaining it, and then maybe you can add too. But I think there are certainly feelings of guilt, because this is something that our bodies are doing to our babies.
Molly Sherwood:
There's this immense sense of responsibility for overseeing your child's care for managing the continuity across the care teams like you talked about with Dr. Trevett. And there can be a feeling of isolation if you feel like those around you don't understand your disease. And so, I hope that women hearing this understand that we know that you're experiencing that, and I hope that other listeners can process that. And also, thank you to those people for learning about the disease right here today, because you're supporting alloimmunized families by just being a voice and a listening ear who understands more than the average person.
Bethany Weathersby:
Mm-hmm. Absolutely. I think that burden on the patients, everything that you just said gets overlooked often. And it is heavy. It's really heavy. But hopefully, we can lighten the load for other women who are experiencing this disease. And also again, I want to say thank you to all of the doctors out there who do provide this wonderful care for their patients, and allow their patients to take part in their own care decisions, and be a collaborative team.
Molly Sherwood:
Mm-hmm. Yeah. I agree. And we do this, and we're doing this podcast because sometimes we see treatment courses or birth outcomes that could be different. They could be better. Women could be better supported. They could feel more empowered. Their babies could have less effects from this disease, and we want to change that. And I think it's possible. That's why we're doing this series is just by spreading awareness and increasing everyone's knowledge of this condition.
Bethany Weathersby:
Absolutely. Okay, I think we did it. I think we covered all the basics.
Molly Sherwood:
Yes. Episode one.
Bethany Weathersby:
Yay.
Molly Sherwood:
Okay. We'll have to do more giggling and messing around in the other episodes. We were just too busy packing all this in.
Bethany Weathersby:
If you, or your partner, or someone close to you has antibodies in their pregnancy. We are here for you. You're not alone. We have a great resource library on our website at allohopefoundation.org. That's Allo spelled A-L-L-O, hopefoundation.org.
Molly Sherwood:
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.