Okay, we’ve had the podcast baby, now what? Molly and Bethany discuss the medical measures needed to keep the baby healthy after they join us on the other side. As our new patient is born we have a new series of information and tips to keep baby safe until baby is finally cleared of mom’s antibodies, usually by 12 weeks of age.
Okay, we’ve had the podcast baby, now what? Molly and Bethany discuss the medical measures needed to keep the baby healthy after they join us on the other side. As our new patient is born we have a new series of information and tips to keep baby safe until baby is finally cleared of mom’s antibodies, usually by 12 weeks of age.
Episode themes:
Terminology used in this episode:
Linked mentioned in this episode:
AAP hyperbilirubinemia guidelines:
https://www.aap.org/en/patient-care/hyperbilirubinemia/
AAP treatment chart for hyperbilirubinemia in HDFN babies (also available within the overall guidelines linked above):
https://publications.aap.org/view-large/figure/10539368/PEDS_2022058859_f3.tif
Get free HDFN Prenatal and Postnatal information booklets:
https://allohopefoundation.org/library/booklets/
Untreated hyperbilirubinemia leads to kernicterus in 25% of cases, see HDFN review of current trends and treatments:
https://pubmed.ncbi.nlm.nih.gov/34675752/
Post-birth guidelines from Netherlands: Smits-Wintjens, V. E. H. J. (2012, February 15). Neonatal management and outcome in red cell alloimmunization.
https://scholarlypublications.universiteitleiden.nl/access/item%3A2894186/view
Allo Hope Terminology Library https://allohopefoundation.org/library/terminology/
For more on tests during pregnancy, see our prenatal testing guide at https://allohopefoundation.org/library/prenatal-testing/
Research for this episode provided by Bethany Weathersby and Molly Sherwood of the Allo Hope Foundation. Find more information at https://allohopefoundation.org
The Allo Podcast is produced and edited by https://www.mediaclub.co
Molly Sherwood:
The information shared on The Allo Podcast is not intended as medical advice. Your medical care decisions should be made in consultation with your physician who is familiar with your specific case. Hi, welcome to The Allo Podcast by the Allo Hope Foundation. I'm Molly Sherwood.
Bethany Weathersby:
And I'm Bethany Weathersby. I cannot believe we finally made it to after delivery.
Molly Sherwood:
I know. It feels like this podcast was our baby and now the podcast baby is born.
Bethany Weathersby:
You're right. And this episode Baby. So a lot longer to be ready to go than we expected.
Molly Sherwood:
I know. We really had to think about this. And we also had a false start because we started to record it a couple weeks ago and we had these super extensive notes and we even, like Eric, our producer was saying that we even looked like when we started recording it that we were already tired of ourselves. We were just feeling very daunted with all the stuff we had to talk about. So we needed to restart and try again.
Bethany Weathersby:
Yeah, I mean it's a lot. It's a lot. And it's a whole portion of the disease, so that doesn't make sense. Okay. Anyway.
Molly Sherwood:
No that does. It does. It's a whole additional section. Disease treatment. This whole season we then talking about all the things you do while you're pregnant and we separated it into a bunch of episodes and now it's the whole chunk of after the baby is born.
Bethany Weathersby:
It really is a bizarre condition, and it almost feels like a totally different disease after the baby's born because now we have all these new doctors, a whole new care team. The monitoring and treatment is a little bit different and some of the risks are not the same as they are in utero. And for me, the strangest part is that the mom is no longer the patient. Her role is now shifting to just being the parent only. And so it almost feels like there's this new patient, even though it's the same little patient that has been here all along. But now it's just a big shift, I think, even though it is the same disease.
Molly Sherwood:
Yeah, I totally agree. You're right. It's a new patient basically. So now we're talking about the HDFN baby. So hopefully we can give our listeners the information and the resources they need to have the best experience possible after they deliver and once they get home from the hospital, even if it's after discharge or after NICU time. So here's the plan we constructed for today. So we're going to talk about what's happening in the baby's body in the case of hemolytic disease after birth, and the two main risks of HDFN, which is high bilirubin or hyperbilirubinemia and anemia. And then we'll talk a little bit quickly about the NICU and what to expect after discharge. And then a couple kind of random special tips that we think are still important to be aware of.
Bethany Weathersby:
Okay, that sounds good. And also, I want to give a quick caveat that there's so much information here and we're trying to convey just the main points that we want listeners to take away, but definitely consider looking at the links and the show notes afterwards to feel fully informed and get all of the detailed information that you need. Okay. So let's start by looking at what is happening in the baby's body and what are the risks?
Molly Sherwood:
Okay. Yeah, that's a great place to start because there seems to be a misconception sometimes that once the baby is away from the mother's antibodies, they're not in danger anymore. And the problem is the baby isn't actually away from the antibodies after birth because yes, they are away from the source of the antibodies, which is the mother, but the antibodies are still in the baby's blood and can continue to attack the baby's red blood cells for up to 12 weeks after birth is generally what they say and sometimes a little bit beyond.
Bethany Weathersby:
And so we already know what happens if too many red blood cells are destroyed by the mother's antibodies. Just like in utero, the baby can become anemic. So that's one of the main risks for the baby. And then on top of that, those destroyed red blood cells release something called bilirubin, which can build up to toxic levels in the infant system. And so that's called hyperbilirubinemia. Such a long word.
Molly Sherwood:
Yes. Oh my gosh.
Bethany Weathersby:
Also, one of the biggest risks to babies after birth when it comes to HDFN. And just to go back to what you were saying, Molly, it is so confusing because the whole time while we're pregnant, we're thinking, I want this baby to be safe and be out of me so that they're away from this danger. At least for me, I was just like, "Oh, I can't wait till the baby-"
Molly Sherwood:
Oh, I totally felt that way.
Bethany Weathersby:
Yeah, because it's like-
Molly Sherwood:
Yes, just get them out.
Bethany Weathersby:
And so then we feel this great relief when the baby's out. Like, whew, okay, now they're out of that really dangerous environment. But like you said, the antibodies are still there and the baby's system circulating, so yeah.
Molly Sherwood:
Okay. So let's start with what you started to touch on, which is bili, well, we call it bili for short, but we're talking about bilirubin. So we talked about the two main risks, anemia and hyperbilirubinemia. So all right, I have a question about this. We hear about fetal anemia as a risk before birth when the baby is still in the mom's tummy. But if bilirubin is a byproduct of the destroyed red blood cells, why is it not a problem before birth? Also, like anemia is.
Bethany Weathersby:
That's a really good question. And I asked my doctors the same thing because I was really worried about my babies having high bilirubin in utero. And they were like, "No, don't worry. It's all because of the placenta." In utero. The placenta filters out the bilirubin for the baby, but after birth, the baby's liver has to take over and filter that bilirubin out. And this is a brand-new liver. And so a lot of times babies are born with slightly underdeveloped livers, especially if they're born early. And so that's just a lot of work for that liver to do. That sounds weird. I feel like I just said liver 12 times.
Molly Sherwood:
Liver is important.
Bethany Weathersby:
It is. That's true. So because of that livers slightly impaired function I guess, and this overload of bilirubin, that's why it can build up to those toxic levels after birth.
Molly Sherwood:
Okay, that's really interesting. It totally makes sense though when you explain it that way. All right, so I'm going to try to talk about why that bili buildup after birth could be so dangerous. So when bilirubin levels get too high, it can become toxic. It's considered actually a neurotoxin, meaning a brain toxin. And so as it builds up, the baby will start to become jaundice, which is where you notice yellowing of the skin or the eyes or the fingernails and untreated jaundice can lead to permanent and fatal effects like hearing loss, bilirubin encephalopathy, kernicterus and death if it's not treated properly.
Bethany Weathersby:
Those are some incredibly intimidating words. I mean just like, yes, hyperbilirubinemia, encephalopathy, jaundice, kernicterus. I feel kind of overwhelmed just hearing you say them.
Molly Sherwood:
I know, me too.
Bethany Weathersby:
And that's the reason why we have a whole section on our website dedicated just to defining these words. It's our glossary and we will definitely link to it in the show notes.
Molly Sherwood:
Yeah, we will link to it. But simply put high bili can lead to permanent brain damage. And that's basically what all the words mean.
Bethany Weathersby:
Well, that's not very reassuring.
Molly Sherwood:
No.
Bethany Weathersby:
But I do remember feeling like after my babies were born, I had this sense of like, "Oh no, there's a new fear unlocked." Because this was not something I had to worry about during my pregnancy. I didn't have to worry about the bilirubin after I figured out that it wasn't a risk in utero. And now it's kind of this urgent time sensitive risk. And so I felt like I had to suddenly be on guard and super attentive because I knew if we weren't proactive enough treating and monitoring the bilirubin, my baby could have that lifelong brain damage that you talked about.
Molly Sherwood:
Yeah. And you are right about that. But what's important to remember is that with prompt treatment, it's completely fine. No long-term effects on the baby. So I was curious, what happens if you don't treat hyperbilirubinemia? What would the consequences be? And we talked about kernicterus, which is permanent irreversible brain damage. And that's something in the medical literature that we say is a or should be a quote, never event. If you Google, kernicterus never event, you're going to see a bunch of publications on it. It's something that is entirely preventable, should never happen. So say there's no treatment for your babies hyperbilirubinemia, I found a study that showed that in 25% of cases those babies would go on to develop connectors. But thankfully there's a simple way to monitor and treat it before it gets to dangerous levels at all. And this is what I love about the post-birth piece is that the baby is very accessible and easy to monitor and treat.
Bethany Weathersby:
Right. There's no extra human that you have to go through to get to the... There's the baby, you can access the baby right there and then treat the baby if needed. I do love that about after birth.
Molly Sherwood:
I know that's so quite ever really thought of it that way. It's one of the births. Yeah. So okay, let's talk about how you do monitor the baby is really.
Bethany Weathersby:
Okay.
Molly Sherwood:
So you can monitor it through blood tests, which is first done on the baby's cord blood when they are born. So you're actually drawing blood from the umbilical cord, but then after that you can draw it usually from a heel prick is where they tend to draw the blood tests sometimes. And it happens more and more nowadays. And it is recommended and safe by the American Academy of Pediatricians. They do, it's called transcutaneous bili, meaning it's sort of like a little light sensor that you put on the baby's forehead or sometimes the upper chest to see there's bili as measured by the skin.
And there are studies that show that it's not quite as accurate as blood bili, but usually it's within three units of being accurate. So you and I talked about, "Okay, what should we say to people on this podcast about it? Should we say it's okay?" So officially the AAP does say that it's okay. And I feel like where we stand is if your hospital is doing the skin bili measurements and the baby is approaching phototherapy thresholds, it could be worth asking and just talking to your doctor about also getting a blood test at that point and comparing too.
Bethany Weathersby:
Yeah, that sounds like a good plan. Did your babies, how were they tested for bili? Was it by blood test or the skin?
Molly Sherwood:
We actually did both. For this reason, I was kind of suspicious. I wasn't really sure how reliable the skin test would be. And so for Grayson, my youngest, he was monitored for high bili for over a month. And several times we went ahead and did skin and blood and sometimes it was perfectly spot on. Sometimes it was off by a couple. But in every case, it never made the difference for us between treatment or not. It was close enough. Yeah. One thing that your care team should be referencing to keep on hand to decide if your baby does need treatment for their high bili and treatment in this case would be putting them under lights for phototherapy that helps the body breakdown they call it unconjugated bilirubin. But anyway, it helps you break it down so the baby can pee or poop out the bili, or you can do transfusions for the baby too.
In order to decide if you're going to need that. The American Academy of Pediatrics, they have a whole guideline for managing bili in newborns. And so one thing that you and your care team should be referencing is this chart that they have. And really even your nurse, I remember even my nurse kind of had it laminated on her clipboard. They look at this all the time.
Bethany Weathersby:
Oh, wow. Okay.
Molly Sherwood:
They have a chart to tell you what levels of bilirubin require treatment and it's mapped out based on the baby's age in hours. And what's new for the guidelines this year is that there's an entirely separate chart with babies who have a risk factor that could create neurotoxicity, which we have, our disease is listed on the recommendations as a risk factor. So all of our babies automatically fall into that chart for the thresholds for babies with bili neurotox risk factors. So we're going to link to the chart. They also have a flow chart here for management, how often to check bili. We'll link to that and then I'll link to just the whole guideline altogether so people can read the entire thing.
Bethany Weathersby:
Nice. Okay. That's really good to know. And I just learned that about these new recommendations.
Molly Sherwood:
I know brain spanking new.
Bethany Weathersby:
Those blood tests, the bilirubin tests are so important because it's a time sensitive treatment and if the bilirubin is high or rising, the sooner the treatment is started, the easier it is to control and keep low. And that's how we prevent that permanent brain damage for the baby. And that's why if you think back to Monique's story, she was so stressed out with her youngest baby because they would not test the bilirubin levels for, I think it was 24 hours after birth. And so if you're waiting for 24 hours to get that first bilirubin level, that's super risky.
Molly Sherwood:
And actually, this flow chart I just talked about that they released says could be complete opposite. It says check it immediately and then every four hours, two times, and then every 12 hours, three times. It's very explicit how often it needs to be checked.
Bethany Weathersby:
I know with my son Callum, his cord blood showed a very high bilirubin level and so right away he was put under lights and then... Anyway, let's talk about the treatment though. So what does treatment look like if the baby's born with high bilirubin or you see that it's trending upwards.
Molly Sherwood:
So the treatment for this is phototherapy lights, like we said. So I'm sure most of us have seen a baby laying in a nursery with those purple blue lights on top of them and that helps them break down and eliminate the bilirubin. And they're safe. They're noninvasive they don't even touch the baby, they're just lights.
Bethany Weathersby:
I love that.
Molly Sherwood:
There are bili blankets that exist that some people get sent home with their hyperbilirubinemia. AAP does not recommend that for our condition. So got to be under lights in the hospital.
Bethany Weathersby:
Because they're stronger right than the bili blanket.
Molly Sherwood:
Right. They are stronger. Yes. And then if the phototherapy lights are not keeping the bilirubin low enough, then doctors can give the baby IVIG infusions to help control levels. And most of the time, even in severe cases, phototherapy and IVIG is enough to keep the baby's levels well below the dangerous limit. But if it's still rising, then we move on to an exchange transfusion.
Bethany Weathersby:
And an exchange transfusion is different from the more typical, I guess, top off transfusion or it might be called simple transfusion. So the exchange transfusion actually removes the baby's blood and replaces it with donor blood, which you can see how that would be beneficial if the baby's blood has all of this bilirubin built up in it, right? So if you're taking away that I guess quote bad blood and replacing it with donor blood, that really helps bring down that bilirubin quickly. And then a top off or simple transfusion, which is the much more common type of blood transfusion is just adding donor blood to the baby's body and not removing any of the patient's blood.
Molly Sherwood:
Okay, that's super helpful because I think we throw around both sometimes.
Bethany Weathersby:
Yeah.
Molly Sherwood:
And those treatments are so effective when they're administered at the right time that like we said, bilirubin encephalopathy and kernicterus and death are like we talked about, they are supposed to be never events. It should never happen completely preventable, which is great.
Bethany Weathersby:
So we've covered the first of the two main risks for babies with HDFN after birth. And now let's look at the other one which is anemia.
Molly Sherwood:
Yeah. This one does feel a little more familiar just because it's a risk both before birth and after birth. And it's monitored and treated the same before and ever.
Bethany Weathersby:
Except that now again, there's no human to go through to get to the baby, right? So it's just much easier to access the baby for monitoring and treatment of anemia. But I do think that the advocacy on the mother's part is still just as hard after birth, honestly as it is before birth. That's my opinion. So anemia is monitored with blood tests and the first one should be done on the cord blood, just like the bilirubin. And they look at the baby's hemoglobin or hematocrit to know if the baby is anemic or not. If the baby is anemic, they give a blood transfusion with donor blood that is matched to the mother's antibodies. So Molly, in your case anti-S, if your babies needed a transfusion, they would make sure to give the baby S antigen negative donor blood.
Molly Sherwood:
And is it true that a lot of babies are not even anemic at birth?
Bethany Weathersby:
Yes.
Molly Sherwood:
It seems like it's such a focus that we have and we're like hyper aware but after birth and then kind of shocked sometimes if they're not actually anemic.
Bethany Weathersby:
A lot of babies with HDFN are not anemic or not severely anemic or not anemic enough to even need a blood transfusion when they're born. You're right. I do think that during pregnancy it's such a fear and focus and we're thinking about it a lot because that's the main risk during pregnancy after birth. It's kind of a surprise when we think that the baby will definitely be anemic and they're not. Sometimes they are, but a lot of times they are not. And one picture I have in my mind of these two main risks is the bilirubin is kind of like a tsunami because it comes on relatively fast in those hours and days after birth to be super vigilant and again, time sensitive with everything. But the anemia is often more like a lava and the lava from a volcano slowly creeping down the mountainside.
Molly Sherwood:
I love this. You're making it sound kind of beautiful, but I guess. You're creeping down the mountainside.
Bethany Weathersby:
Oh my gosh.
Molly Sherwood:
That's a really good analogy.
Bethany Weathersby:
Yeah.
Molly Sherwood:
That's going to stick with me. I like that.
Bethany Weathersby:
Yeah, my boys, I have four boys. You have three. They're obsessed with natural disasters.
Molly Sherwood:
Oh yes, totally.
Bethany Weathersby:
Like carnage, calamity.
Molly Sherwood:
Destruction.
Bethany Weathersby:
Yes.
Molly Sherwood:
Yes.
Bethany Weathersby:
It's so funny.
Molly Sherwood:
No, we're really into the volcanoes right now. I have a volcano books, we do the vinegar baking sort of thing all the time, but my boys fight over who gets to add the vinegar.
Bethany Weathersby:
Yep, yep. In fact, I think at least two of our last gender reveals were just a volcano revealed. The lava that came out was either pink or blue. That's a great idea because they're so obsessed with, again, natural disaster. So that's probably why this is in my mind. But do be aware that a baby can be totally have normal hemoglobin and hematocrit at birth, not anemic at all, and weeks later be anemic and need blood transfusions. So two of my three surviving HDFN babies were not anemic at all when they were born. And then they were discharged from the hospital a few days later and then they both needed multiple blood transfusions starting at four weeks old. So they did not become anemic enough for a transfusion until they were four weeks old.
Molly Sherwood:
That is so crazy. I think the delayed onset anemia concept can be super tricky because that's when they risk not being seen and not getting the care that they need. If they weren't presenting with anemia at birth and then you might mistakenly clear them and not look after them to see if they still need care. How does the baby suddenly become anemic, like you said at like three, four, five weeks old.
Bethany Weathersby:
Yeah, so it is very sneaky and there are some contributing factors that kind of help because that delayed onset anemia. Babies with HDFN often have suppressed red blood cell production. So basically, their bodies either stop or slow down making new red blood cells and some antibodies like Kell not only destroy the red blood cells in the baby, but also suppress the baby's ability to make new red blood cells, which I'm like, that is just so insidious. I feel like that's like extra equal.
Molly Sherwood:
Yes, that's a great word for it. Yes.
Bethany Weathersby:
And that's what happened to, I mean my daughter Lucy, that's one of the reasons she died is her red blood cells were destroyed and then she was, her ability to make new red blood cells was suppressed. And that's why Kell has to be watched extra closely. And I believe that's part of the reason why there's a lower critical tighter and-
Molly Sherwood:
Yeah. Or now they say like-
Bethany Weathersby:
Yeah, exactly. Okay, so some babies are born with that suppressed ability to create new red blood cells, especially those who have received IUTs blood transfusions before birth because this is so cool to me. Okay, this was so interesting when I learned this during one of my pregnancies, I guess the second one where I was actually having multiple IUTs, the baby stops making new blood because the baby's body in utero realizes there's an outside source providing new blood to me. So I'm not going to waste my energy making new blood if somebody else is making it for me. And so they stop.
Molly Sherwood:
Wow.
Bethany Weathersby:
They stop making new red blood cells and that's why another reason why IUTs are continued until delivery and that's why these babies are born not really making new blood. And so you can see how this is a problem if they're the baby has the mother's antibodies still circulating in the system and then they're not creating new blood and they're growing as the weeks go by, they're growing, they need more blood so that what's causing this delayed onset anemia.
Molly Sherwood:
Yeah, that's a great point. And to bring that back to what it means for blood work after birth, another important test that should be done on the baby's cord blood and then in follow up blood tests is the reticulocyte count. And the reticulocytes are showing you how many sorts of immature red blood cells are being made. So it shows you is the baby actively making new blood.
Bethany Weathersby:
And it's important to look at the retic because you need to know if that baby is making new red blood cells to replace the ones that are being destroyed by the mother's antibodies. I remember for a while my baby's retic was zero, like absolute zero, which meant nothing's being produced here by this baby's own body. That's why they needed several blood transfusions all the way until I think eight weeks old. You can just see why it's important to monitor closely after the baby is born and after a hospital discharge. So what does monitoring look like for these babies after they come home?
Molly Sherwood:
So for the anemia portion, which is what we're talking about right now. Yeah. After the baby is discharged, they should still receive weekly blood tests until their reticulocytes which we're calling retic and hematocrit, or hemoglobin are going up for two weeks in a row. So is that what your baby's care looked like after they were discharged?
Bethany Weathersby:
Yes. We had a great collaboration between a pediatric hematologist and our pediatrician and I kind of had to facilitate that between the two of them, which is fine. So a lot of people have to step up and collaborate for this to run smoothly, but we did make sure that they had weekly blood tests, I think all the way up until about 15 weeks after they came home and watching for that delayed on set anemia.
Molly Sherwood:
Yeah, we did. I'm trying to think about what we did with Gray think we did do weekly blood tests to check for anemia for the time that he was being monitored, which for him was about five weeks. And his issue was bili, he had really high bili, so we were checking bili more often than we were checking hemoglobin and hematocrit and reticulocytes. But we were watching him for about that long. And what's really interesting, I actually can't believe this, especially with your pregnancy histories of our five HDFN babies, which span from mild to really severe in terms of HDFN, only one of them actually needed NICU time, right?
Bethany Weathersby:
Right. Yeah, that is true and amazing because I guess at least for me, I just expected them all to be in the NICU for an extended amount of time.
Molly Sherwood:
Do you think it's a product of the quality care that they received in utero?
Bethany Weathersby:
I have seen that often babies who need intervention before birth seem to need less intervention after birth, actually.
Molly Sherwood:
Yeah, I guess it makes sense. It's like I don't even know. It's like they're born having already started their treatment path, if that makes sense. Kind of like they been treated. So they're starting from that jumping off point. I don't know.
Bethany Weathersby:
Yeah, this is making me think of my friend Emily. So she has FYA antibodies and little C antibodies with both of our youngest. Her son is Emmett, and he had no IUTs, he didn't need any help in utero, no intervention. She had a very low-key pregnancy, I mean monitoring closely, but no intervention needed. And then my youngest son August had seven IUTs. I had to do the plasmapheresis, IVIG, phenobarbital, all of these interventions. And after birth, both of the boys needed the same amount of intervention. So their post-birth severity was about equal. So Emmett needed extensive phototherapy and NICU time and then three blood transfusions after he was born. And August needed a little bit of phototherapy, no NICU time, and then he needed three blood transfusions. So if you just step back and look at the whole HDFN course for both of these boys, it's incredible to see how different their prenatal course was compared to the severity after birth for both of them.
Molly Sherwood:
That's really interesting.
Bethany Weathersby:
Yeah.
Molly Sherwood:
That's super helpful to compare and just to know that I guess you just not to make people super worried or anxiously hypervigilant, but you don't really know. But the treatment course will look like for your HDFN baby or after birth.
Bethany Weathersby:
It is sad to see babies get a blood draw, but it is pretty easy to monitor really blood tests.
Molly Sherwood:
And I will say actually, if this is any indication of how much I feel like this care at this stage of life for them is so important. Hey is my second son who ended up being Coombs negative. We still tested him a couple times through blood draws and one of his heel pricks got infected. I talked about it very briefly in my story episode and he was admitted for four or five days for IV antibiotics.
Bethany Weathersby:
Wow.
Molly Sherwood:
And even going through that, I still don't regret what we did to just make sure that he was safe.
Bethany Weathersby:
Yes. Yeah, because like we said, the consequences can be so severe if they do not receive the right treatment and timely treatment in this small window of time in their lives. It's so important to get the right treatment. So let's quickly look at why an HDFN baby might need NICU time. And of course, NICU is neonatal. Oh my gosh.
Molly Sherwood:
Yeah, you're right. We should explain. We should say that.
Bethany Weathersby:
Why you say it since my brain is not...
Molly Sherwood:
No, I'm nervous. I'm probably not going to get it right. Okay. Neonatal Intensive Care Unit, right?
Bethany Weathersby:
There you go. Yeah, that was smooth. All right, so why would an HDFN baby need some support in the NICU? A few reasons. Often our babies are born premature, and we talked about that I think in detail with the delivery episode. So we won't go into those details, but our babies are rarely born at 40 weeks plus, right? I mean...
Molly Sherwood:
Yeah, nor should they be actually-
Bethany Weathersby:
Right. They just really should not be. And so sometimes they just need a little extra support if they're born early in the NICU. And then also we talked about high bilirubin usually has to be treated in the NICU. Sometimes it can be treated at bedside in the mother's room with her, my son August, it was very mild, but they're like, "Let's just be proactive." So they just brought a bili bed in there next to me. It was so wonderful, and he was under lights there and I could just breastfeed him and put him back under.
Molly Sherwood:
That must have been so nice to be physically in the same room with him.
Bethany Weathersby:
Oh, my goodness. It was so vital to my emotional wellbeing. It was just so wonderful. But my son, Callum, it was much more severe, and he was born earlier, so he was in the NICU and receiving his care there.
Molly Sherwood:
And it could be in the NICU for anemia too, or sometimes just for extra monitoring just to be cautious, especially if the baby was born in an emergency situation or if we have reason to think the baby is going to be severely affected.
Bethany Weathersby:
And I think we could really dive into the world of the NICU and spend the rest of this podcast discussing it because there's so much that is involved in the NICU journey.
Molly Sherwood:
So maybe we should just dedicate a whole episode to this or someone's story with a NICU in a season two.
Bethany Weathersby:
Have we decided that we're doing a season two?
Molly Sherwood:
I don't know. Do you think people like us enough? We'll just have to see.
Bethany Weathersby:
I hope so. People have a lot to say.
Molly Sherwood:
That's true.
Bethany Weathersby:
Have a lot to say.
Molly Sherwood:
And we got to do some more patient stories. We keep talking patients. I would just love to give them a voice and amplify them. So hopefully we can do more.
Bethany Weathersby:
I would love to get some international patient stories to excited about that.
Molly Sherwood:
So let's just go to after hospital discharge, whether it's discharge from the NICU or just discharge after birth. So I know this is a super important time to stay vigilant with monitoring and it just seems way too easy for babies to fall through the cracks because they're having this big transfer of care, not they have no relationship anymore, usually with the MFM who maybe managed them in utero.
Bethany Weathersby:
And there is this misconception that, they're discharged from the hospital, their blood work looks great. And so they're done with HDFN. It does seem easier to fall through the cracks after hospital discharge. Or if you look at the other extreme early anemia in that second trimester, I feel like the extremes on both ends, it's easier to fall through the cracks because maybe we just aren't as vigilant or aren't on guard at those times. And so we just want to make sure that everyone stays on guard after hospital discharge and remembers that this window of time after the baby's born and comes home from the hospital is so important.
Molly Sherwood:
And there's an end in sight because this is a temporary disease.
Bethany Weathersby:
Yes.
Molly Sherwood:
Blood tests are still important when it comes to monitoring your baby for HDFN after discharge. And there's no reliable way to monitor by outward signs and symptoms alone, which I think many of us have heard just sort of through not old wife's tales, but we hear about skin coloring, baby's mood feeding and sleeping patterns. And that is an important clue to see if there's something going on with your baby. But it's certainly not, you should not rely exclusively on those outward signs to trust what's going on with your baby on the inside. And some babies with HDFN have been anemic kind of on and off for months already, so their bodies have kind of adapted to it. They might not be showing outward signs of alarm even when their hemoglobin or hematocrit is dropping.
So of course, you can look for some things in your baby at home. And that would be, again, not to say it's the only way to monitor, but of course you can do this yourself at home by looking for lethargy, just being super kind of sedated in the way the baby is acting poor, feeding, irritability, difficulty breathing, pale skin or pale nail beds that could indicate anemia. And then on the flip side, as opposed to pale skin and pale nail beds, if you see yellow skin and yellowing of the whites of the eyes, that often signifies jaundice. So if you're ever worried about any of those things, even if your baby wasn't going to see the doctor today, go ahead and take that baby in for blood work.
Bethany Weathersby:
Yeah, good reminder. And it also works the other way around where blood tests can be reassuring. Even if your baby has extremely yellow skin, even when the baby's bilirubin stabilizes, it takes a while for their skin to go back to its normal color. So I remember Callum, he was done with the bilirubin. And was everything was fine and he was so orange, even the whites of his eyes were still orange. And just having those blood tests were so reassuring for me because I'm like, "Okay, this is just, I know that it takes a while for this to regulate and go back to normal. I don't need to worry, but he does look alarmingly orange."
Molly Sherwood:
Yes. Gray was the same way. She was like glowing for a long time.
Bethany Weathersby:
Oh, that's cute. Adorable. Glowing baby.
Molly Sherwood:
A glowing baby.
Bethany Weathersby:
Yeah. Okay. All right. So after discharge, the baby needs weekly blood tests to monitor. It does, like we said earlier, it takes this collaboration between the parents pediatrician and usually pediatric hematologist. And so be ready to facilitate that, be ready to ask your doctor for those weekly blood tests because most of the time they will not offer them unless you ask.
Molly Sherwood:
Yeah. And if your baby's bili is still creeping up, even after you discharged, you might be getting your baby's bili checked every day or every two days. I remember bringing Gray in on the weekends, like Friday, Saturday, Sunday, checking bili every day.
Bethany Weathersby:
And again, sometimes the parents have to initiate that. So if you see, that's why it's good to get these numbers, ask, even write them down, ask what the bilirubin level is because if you see that it's increasing, you need to make sure that they're checking it again the next day and then again the next day until it stabilizes.
Molly Sherwood:
All right. Yeah. So remember earlier we talked about reticulocytes and so I think we mentioned that in terms of the blood draws for anemia, the retic counts and the hematocrit levels should be checked until the reticulocyte count is going up for at least two consecutive weeks in hematocrit. And that's actually really good. So we pulled that from a really thorough management publication that came out of our friends in Leiden and was actually overseen by Dr. Lopriore, who we haven't talked about yet. But he is a neonatologist out in the Netherlands who specializes in this disease. And he's also a member of the Allo Hope Foundation's Medical Advisory Board. So shout out to him, thank you for this awesome guidelines document. So we'll put that in there and if you want to hear more about the actual transfusion thresholds and phototherapy thresholds that they use in their practice, go find that link and that would be great.
Bethany Weathersby:
Yeah. Okay. So before we move on from post birth, I just want to give a little bit of patient experience with blood transfusions after discharge. So again, these are so much easier to do outside of the womb versus in utero. Usually, you are at an outpatient clinic at a children's hospital where there is a pediatric hematologist who orders the transfusion. We always went just early in the morning and then would be back home usually by dinnertime. So there was no hospital. We weren't being admitted to the hospital technically and staying overnight or anything like that. So that was nice. I learned to pack a ton of snacks, drinks, entertainment.
I brought my heating pad to relax because once the baby gets that IVN in, I mean you're just there for hours just sitting there. Also, something I learned was that the best place for us to put that IV in is the scalp. It doesn't seem like it, but it really was much easier. The baby has large veins on the scalp and they're very visible, unless your baby is born with a ton of hair, which sometimes they are, but usually babies are pretty bald, and you can see those veins and they usually get it on the first try.
And again, we're talking about a tiny baby, probably born early, just a few weeks old. And so it's very hard to get those IVs in. And that's something that a lot of parents have to endure. And it's so stressful to see them poke the baby again and again and the baby's screaming and it feels really traumatic. And so I learned to just say, "Can you please do a scalp IV?" And of course, if they don't get it on the first try, I always said, "Can you please go get the IV team?"
Because there is a team of people who specializes in placing these IVs in small veins. If you're at a pediatric hospital, then ask for that and it saves the baby a lot of suffering.
Molly Sherwood:
That's a great tip.
Bethany Weathersby:
And so then they usually, once the IVs in, they give the baby pre-meds to help avoid a reaction. So for us, the babies were given Benadryl and Tylenol and then that Benadryl really kicks in and the baby just sleeps for hours. It was great. It was always a really sweet time for me and the baby. It always felt like a bonding moment because there's no other kids needing me. I would just breastfeed my baby and then the baby would just lay on my chest sleeping. All of this happens during the blood transfusion. So it was really sweet. I always felt once that IV was in, I felt pretty relaxed during those blood transfusions.
Molly Sherwood:
That would be really nice. I definitely, I see where you're coming from with that. I feel like being moms with multiple kids, you realize that even those moments, even if it's sort of an unfortunate circumstance, but when you're in silence with one of your children, it's really, really wonderful.
Bethany Weathersby:
Yeah, it is.
Molly Sherwood:
Okay, so the special golden question, everyone wants to know how do you know when your baby is done with HDFN forever? And different centers have different literal thresholds, but basically, you're looking for the bilirubin to be consistently trending downward. The hemoglobin or hematocrit and the meticulous sites consistently increasing. And the important thing in my opinion, is having multiple data points because you're looking at the direction, the trajectory of everything. That's why returning to the baby's pediatrician, or the pediatric hematologist is critical until everyone feels comfortable that the baby has recovered from HDFN.
Bethany Weathersby:
Absolutely. And that is the best feeling ever to be discharged and done. No more blood tests and then you just have a lifetime with this baby. So sweet. Okay, let's move on to some things to be aware of. And like we said earlier, this is kind of a bizarre disease after birth in some ways. And so here are some things that I found to be very unexpected and just things to be aware of. Okay, so let's start with iron. And this is probably the most misunderstood part of this disease after birth. And we see parents needing to advocate for this the most. I think of any other intervention or monitoring anything, this is the thing they have to advocate for. So the majority of the time a healthcare provider sees anemia, it is iron deficiency anemia. So that automatically is resolved by giving iron supplements or sometimes an iron infusion.
Molly Sherwood:
I was talking to my friend Marisa, who listens to this podcast. She's a NICU nurse, shout out to Marissa and she has promised that she is going to implement this next time she has an HDFN baby. But anyway, she says that just by default in their center that kind of always just give them iron and no one's someone saying it's a bad thing. But it's just so prevalent that it's sort of a go-to is to give iron.
Bethany Weathersby:
And most of the time it's not like if the baby isn't super low, it's not harmful to give iron anyway. You know what I mean? Most of the time, I think. So that's why it's just kind of a go-to remedy. But babies with HDFN have a completely different kind of anemia. They have hemolytic anemia, which is the red blood cells are being destroyed by the mother's antibodies. It has nothing to do with iron so that these babies with HDFN are experiencing a continued hemolytic anemia. It is not iron deficiency anemia. And in fact, our babies are at high risk for iron overload even if they are anemic at the time. And one study, again out of Leiden found that iron overload occurred in 70% of neonates with alloimmune HDFN at birth. And none of the babies in the study were iron deficient.
Molly Sherwood:
Wow.
Bethany Weathersby:
Yeah. So if you think about that.
Molly Sherwood:
It's the nail in the coffin there.
Bethany Weathersby:
If you know we're starting with iron overload, then we don't need to be adding more iron to that. Some babies have already had multiple iron-rich blood transfusions before birth and many babies will need again, iron-rich blood transfusions in those weeks following birth. So that's why they do not need to have iron supplements. Another reason is that the iron released from red blood cells and hemolytic anemia is actually reused. And so iron stores are not reduced-
Molly Sherwood:
What?
Bethany Weathersby:
Yeah. Pretty interesting.
Molly Sherwood:
I did not know that.
Bethany Weathersby:
I know.
Molly Sherwood:
That is so cool.
Bethany Weathersby:
And I think that's why even the babies that have not had IUTs can sometimes have iron overload at birth.
Molly Sherwood:
Yeah.
Bethany Weathersby:
Yeah.
Molly Sherwood:
That's so interesting. That totally make sense now.
Bethany Weathersby:
Parents listening, just say to your care team, please do not give my baby iron unless you have tested the baby's ferritin first. And if the ferritin is low, that's fine to give iron supplements, but I'm telling you it's probably not going to be low.
Molly Sherwood:
Sounds like it's not, yeah. Okay. I have a thing I want to talk about next. That is kind of an aside, but we get it a lot. Can I breastfeed? Is it okay to breastfeed my baby? The short answer is yes. And actually, like we said, the baby needs to metabolize and break down and excrete like pee or poop out the bilirubin. And so keeping them super hydrated and however you choose to feed them is really helpful in and of itself, whether it's breast milk or formula. Actually, the AAP, the American Academy of Pediatrics that I was talking about and their guidelines for hyperbilirubinemia, they point to research that shows that breastfeeding less than eight times a day is associated with higher bilirubin levels. So the flip side of that is if you're planning to breastfeed them as much as you can produce or tolerate and as much as you can when you're with that baby,
Bethany Weathersby:
I always had to supplement with formula those first few days because it took at least three to four days for my milk to come in. And so I knew that that was super important with the bilirubin. So we always supplemented with formula and then we went on to breastfeed for a year after that. So it did not affect the breastfeeding journey, but that is really important to keep that baby hydrated and pooping it out. Okay, so now let's talk about some of the weird things that we might come across when dealing with babies that had IUTs. Okay, so the baby has had IUTs, intrauterine blood transfusions before birth and now they're born. Here's some of the things you might see. Most of those babies, if they've had multiple IUTs are born 100% donor blood. So they are not born with their own blood type. Actually, all three of my babies were born with an O negative blood type and now none of them have an O negative blood type. I think they're all either A negative or A positive.
Molly Sherwood:
It's wild.
Bethany Weathersby:
Yeah. So they were born with someone else's blood-
Molly Sherwood:
That's crazy.
Bethany Weathersby:
Fully donor blood. And because of that, remember that the donor blood they've been given is antigen negative. So it cannot be destroyed by the baby, by the mother's antibodies. That's why these babies who are 100% donor blood have a negative Coombs test when they're born because it shows that those red blood cells are not being attacked by the mother's antibodies. But even with that negative Coombs test, they're still obviously severely affected by HDFN.
Molly Sherwood:
Yes. And we didn't talk about the Coombs test in this podcast because we talked about it at delivery because it's usually done at delivery, not on an ongoing basis, but that is true sometimes in some cases, even when the baby hasn't had an IUT, it depends on the specific antibody and my son Gray was Coombs negative, but he actually had, you can also calculate a hemolytic response by the rate of rise of the bilirubin right after they're born. That's in the AAP guidelines. He very clearly met the criteria for HDFN based on how quickly his bilirubin was spiking.
Bethany Weathersby:
So again, be vigilant with that follow up blood work. And then another thing because that newborn screen, so all babies are given this newborn screen, it's a blood test to check for a list of, I think it's usually inherited in main serious disorders that would need to be kind of caught right away. And so that newborn screen if done on babies who've had multiple IUTs sometimes comes back with false results.
Molly Sherwood:
Makes sense actually. You don't necessarily think of it, but you're totally makes sense.
Bethany Weathersby:
Yeah. I remember being terrified when I got the call after I was home with my baby Nora. And they were saying she had this very serious positive result on her newborn screen, and they said it looks like she might have carnitine deficiency disorder, which is an inherited metabolic disorder. And I was terrified. I remember I was in Target, and I sat down on the floor because I felt kind of faint because I was like, "Oh my gosh, I got her here alive just with this to now come out of nowhere." And then we realized, "Oh wait, that wasn't even her blood." And so after she was totally done with HDFN and she was making her own blood, we tested her again and everything was negative. She was clear. So just a heads up that baby's with multiple IUTs need to have that newborn screen done again later, a few weeks after their last blood transfusion. So just to make sure that you're testing that baby's blood.
Molly Sherwood:
The baby is born, this is what's so crazy about this disease. Well, a lot of stuff is crazy about. What crazy thing. And there were sort of this is the crazy thing.
Bethany Weathersby:
We just keep listing more and more crazy things.
Molly Sherwood:
You tell the crazy things. This baby is born already with their own medical history, which the mother is responsible for relaying because fetal medical records are not really a thing. So record keeping is critical because all the stuff that's happened to the baby so far is hopefully written in the mom's medical record, not in the babies. So a pediatrician who will put time aside to learn about the baby's medical history is important. And so coming back to a kind of holistic, big picture perspective of what's going on in an HDFN baby that can help you and your care team continue to be thoughtful about how to watch your baby, it's really hard to memorize exactly when to check bili exactly when the threshold is met. But if you and your team are aware of the process of what's going on, hopefully together you can be thoughtful about what to do to measure how your baby is doing.
Bethany Weathersby:
Right. Yeah. That holistic view of everything that's happening is so important when it comes to care post birth. And by the way, our newborn booklets for patients, well also providers if they're interested are really great for this phase of HDFN. And we will of course include a link in our show notes for you can get a PDF of those booklets or a request form and we will send them to you free of charge. And some women actually order multiple booklets so that they can have them with them when they give birth, have them in the hospital and then they give copies to their nurses and doctors. And just a reminder to stay on guard and continue that advocating after your baby's born, after your baby's home from the hospital all the way until baby is totally cleared of HDFN.
Molly Sherwood:
Yes. Could not agree more. Isn't it so great that the lab test exists to monitor what is going on? I cannot imagine before we have it.
Bethany Weathersby:
You're right. And actually, we are going to talk about that in our next episode.
Molly Sherwood:
Yes. That episode is so cool. It's the episode and I know it's cool.
Bethany Weathersby:
Because we already recorded it.
Molly Sherwood:
Am I allowed to say that? Well, we just jumped the gun on that one because it was cool. But that was our history, like past, present, future of HDFN. I can't decide what my favorite episode this season is, but that one's up there. It's very good.
Bethany Weathersby:
I mean I think it might be my favorite as well.
Molly Sherwood:
We talked about a lot of stuff. What would we say about how to embark on this newborn period with HDFN?
Bethany Weathersby:
Right. Okay. I do just remember that you're going to see different specialists, different providers, you're going to be passed from this provider to the next provider. Your baby will see different specialists, and the common denominator with all of them is you and the baby. So obviously, your baby can't speak for himself. So just remember that you have to ensure that continuity of care that is flowing from provider to provider. And often that means we have to speak up and kind of initiate those tests. And even treatment sometimes remember time sensitive and so don't be afraid to speak up.
Molly Sherwood:
Yeah. Well, not just you, I know we're saying you as in the Allo mom, but we're not only talking about the Allo mom, we're talking about people around her who are going to help support her, who are going to help advocate for the baby. We're talking about the mom's care team. So you like royal you, is that a word? I've heard people say royal wheat. Anyway, royal you should be able. I mean now it's the word I'm not sure, but from right now it's royal you should be able to communicate that the baby has a specific type of anemia called hemolytic anemia. It requires special prolonged monitoring, and your baby is still at risk for HDFN up to 12 weeks after birth and sometimes more, but usually within 12 weeks, right?
Bethany Weathersby:
Right. I mean, well, mine were discharged at 15 weeks from hematologists and I did have to just remind my doctors several weeks after birth, remember that my antibodies are still in my baby system circulating and destroying any blood that they're trying to make. So just remember that.
Molly Sherwood:
Yeah. And you should be aware that the two biggest risks are hyperbilirubinemia, which can cause kernicterus it's untreated or if it's treated too late. And anemia, both of which are treated by phototherapy and transfusions and sometimes other supplemental treatments like IVIG.
Bethany Weathersby:
It is so much to remember. And again, we didn't share everything. There's a lot more to know, but thankfully we have links and resources available in our show notes. Remember to check those out. And of course, we are always here to answer your questions too.
Molly Sherwood:
Yes. Okay. I think that's it. I am tired of talking now. Yes. This was a lot.
Bethany Weathersby:
You're having that crash. Remember you were sweaty and now it's all gone.
Molly Sherwood:
I know. I had that really caffeinated coffee and I was like, really buzzing and now I am like, "Okay, I'm tired." If you, your partner or someone close to you has antibodies in their pregnancy, we are here for you. We have a great resource library on our website at allohopefoundation.org. That's spelled Allo A-L-L-O hopefoundation.org. Thanks for listening. The Allo Podcast is a production of the Allo Hope Foundation. It was researched and written by Bethany Weathersby and me, Molly Sherwood. It is produced and edited by CJ Housh and Eric Hurst of Media Club. The Allo Podcast is sponsored by Janssen Pharmaceutical Companies of Johnson and Johnson.