Eventually, a pregnancy story becomes a birth story. Molly and Bethany cover the various things to expect with an Alloimmunized birth, and talk about the many things you can do to prepare for your birth, and some choices you can make to have your birth experience be your own.
Eventually, a pregnancy story becomes a birth story. Molly and Bethany cover the various things to expect with an Alloimmunized birth, and talk about the many things you can do to prepare for your birth, and some choices you can make to have your birth experience be your own.
Episode themes:
Terminology:
Allo Hope Terminology Library https://allohopefoundation.org/library/terminology/
Guests: Dr. Thomas Trevett http://www.georgiaperinatal.com/dr-trevett/
Links mentioned in this episode:
ACOG Medically Indicated Late-Preterm and Early-Term Deliveries (guideline on delivery timing): https://www.acog.org/clinical/clinical-guidance/committee-opinion/articles/2021/07/medically-indicated-late-preterm-and-early-term-deliveries
Freya Positive Birthing App: https://thepositivebirthcompany.co.uk/freya-hypnobirthing-app
Request a patient booklet: https://allohopefoundation.org/library/booklets/
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/
Recording:
The information shared on the Allo podcast is not intended as medical advice. Your medical care decisions should be made in consultation with your physician who is familiar with your specific case.
Bethany Weathersby:
Hi, welcome to the Allo podcast from the Allo Hope Foundation. I'm Bethany Weathersby.
Molly Sherwood:
And I'm Molly Sherwood. I don't know how we start. We're still recovering. Bethany's recovering from drinking a little too much this weekend, and I'm recovering from having a slight milli metrically too much coffee between one to 1.2 cups, which is just a terrible adjustment for me.
Bethany Weathersby:
Yeah, you were drinking this morning and I was drinking yesterday.
Molly Sherwood:
But you're still...
Bethany Weathersby:
I just, I'm old. I'm old now.
Molly Sherwood:
Yeah, I feel that way. And it's not just with alcohol. I mean, obviously if I have more than two drinks, not okay anymore. But even if I have a little bit too much gluten, because I have a sandwich that was too bready or something and I'm like, Well, I feel a little nauseous the next day. Or if I have a touch too much dairy in my coffee. I guess it's just comes with age or is it- You know what I wonder, is it because we've become mothers and we're now so hyper aware and in tune with our bodies that every tiny change I'm like, Oh, that Starbucks coffee had too much caffeine for me this morning and now I'm going to sweat all day.
Bethany Weathersby:
Oh no. I think it's more like we are so physically pushed to the edge of what's possible when it comes to energy and just exhaustion. And our bodies are like, I can't take much more of this.
Molly Sherwood:
Yeah, it's like to get through a day with the kids, I need to be at my operational best. Anything that affects that, I am just trash that.
Bethany Weathersby:
Yeah. So here we are. Here we are.
Molly Sherwood:
Here we are. But this is going to be a fun episode today, I think, something fun to chat about.
Bethany Weathersby:
Yeah, I'm excited about today's topic because it's definitely not as heavy as some of our other episodes and not as, I guess kind of detailed and intricate. We're discussing delivery in Alloimmunized pregnancies, which is such a sweet topic because the pregnancy itself, at least in my experience with these pregnancies, can be so scary and exhausting and a lot of women don't even know if they will make it to delivery with a living baby. So it's kind of this the ultimate goal. Obviously there's all these little goals through the pregnancy like, Oh, I can't wait until the baby's big enough for an IUT. Or we get that first MCA scan, or we get to viability third trimester and this is the ultimate goal. So delivery is just this great relief, I think in some ways.
Molly Sherwood:
Yeah, I think so too, especially for our circumstance where we're going through our pregnancy feeling like our baby isn't safe inside because of the antibodies. It's like, Oh my gosh, I just want them out. I want to see them, I want to be able to hold them. And it just feels like they feel safer on you.
Bethany Weathersby:
Yeah. Yes. And it's easier to treat HDFN on the outside as opposed to inside, in utero. So that's always just a great relief. And so we will both be sharing a little bit about our delivery experiences since you and I kind of represent both ends of the spectrum when it comes to severity of disease.
Molly Sherwood:
So I think today we'll need to talk about certain concrete things like delivery timing and what you need to remember to ask for about the baby right after they're born. But also I just feel like a big theme of today is going to be talking about finding a way to feel empowered in your birth even when so much is out of your control. So hopefully we can just share back and forth about bits and pieces that we felt empowered about or things that we had to let go and things that we weren't willing to let go. Just stuff like that.
Bethany Weathersby:
Yeah, that sounds like a good plan.
Molly Sherwood:
Do you want to start by just sharing about timing for delivery?
Bethany Weathersby:
Sure. And I think this is probably one of the most important questions patients have about the birth of their baby. When do I need to deliver? Before we dive in, why don't you and I just share when we delivered all of our babies? Or should we just do the Alloimmunized pregnancies?
Molly Sherwood:
Yeah, sure. I had two Alloimmiunized pregnancies and both were induced right at 38 weeks.
Bethany Weathersby:
Okay.
Molly Sherwood:
What about you?
Bethany Weathersby:
Nice. Okay, so four Allo pregnancies. The first was 19 and a half weeks. Of course she didn't survive. The second was 38 weeks and then 34 weeks and four days. And the last was 37 weeks and one day. So that's a pretty big range there.
Molly Sherwood:
Yeah. It really is. And I think actually you talk a lot about in our severe disease episode, I think there's some super interesting information about your pregnancies that kind of feed into the differences that you had between the 38 versus 34 and 37 deliveries I thought was really cool.
Bethany Weathersby:
Yes. And then obviously a huge difference in those pregnancies and the 19.
Molly Sherwood:
Right.
Bethany Weathersby:
Or 20 week delivery of Lucy. So you can hear more about that in other episodes.
Molly Sherwood:
Yeah.
Bethany Weathersby:
When we're talking about timing of delivery, there are kind of two categories of pregnancy, those that needed intervention, which is IUT, intrauterine blood transfusions, and then those that did not need any intervention.
Molly Sherwood:
Yeah. Why don't you talk about the ones that do need intervention and I'll go over pregnancies that don't need intervention.
Bethany Weathersby:
Okay. All right. So if the patient is already having IUTs, intrauterine blood transfusions, then it is a bit harder to predict or time the delivery because if anything ever goes wrong during the procedure, the IUT procedure, they can deliver and then get the baby out of danger. And also if between IUT, sometimes babies don't handle the fetal anemia well or go into distress as one of my sons did and we had to do an emergency C-section. And so there's a lot more I think factors that can kind of affect timing of delivery. But in general, the delivery is timed based on the last IUT. Okay, so usually an IUT will last about two or three weeks. So usually they time the delivery for two to three weeks after that last IUT. And doctors have different preferences when it comes to when they feel comfortable doing that last IUT.
So my doctors both, the goal was always to do the last IUT at 35 weeks and then deliver at 37 or 38 weeks. And we were able to do that with two of my babies and it was great.
Molly Sherwood:
What about if the patient has elevated titers and then it creeps up around that time?
Bethany Weathersby:
Yes.
Molly Sherwood:
But they haven't had an IUT yet. What about that?
Bethany Weathersby:
Yes. So I think that most doctors do not do that first IUT later than 34 weeks. And again, some are earlier, some are like I'll do a first IUT at 33 weeks. But yeah, most of them 34 weeks is the latest. So say you get to 35 weeks and your MoM is now at 1.5 or over, they usually just deliver and babies at 35 weeks do great on the outside.
Molly Sherwood:
Oh yeah. And we also asked Dr. Trevett too, who's a member of our medical advisory board and also your doctor for your last two pregnancies. And we asked him when he usually plans the patient deliveries for his Alloimmunized patients.
Dr. Thomas Trevett:
In the group of women that have had transfusions, we time the delivery based on the last transfusion and how high the baby's hematocrit level is at the time of the last transfusion. So if we find that the last transfusion hematocrit is let's say 40, we know that the hematocrit theoretically should fall by about a point every day after the transfusion. And so we want to deliver the baby before the baby becomes severely anemic again. And so if we do the last transfusion, typically somewhere between 35 and 36 weeks, and so we can time the delivery before the baby gets severely anemic again. And so typically that's around 37 to 38 weeks.
Molly Sherwood:
Okay. And just a reminder, the hematocrit is just a reflection of basically how much red blood cells are in the total volume of blood. So if it's low, then that means of all the blood in this baby, very little of it is actually the red blood cells and those are the things that are being destroyed during our process of Alloimmunization and HDFN.
Bethany Weathersby:
At the end of that last IUT, they check the baby's hematocrit to see what that level is. And if it's, let's say, I think he said 40 as an example, there's a little formula where you can subtract one point per day after that IUT to just estimate where the baby's blood levels are. And so you can kind of count down. So let's say you do deliver two weeks after that IUT you're looking at a 26, I think.
Please help me with my math if that's right.
Molly Sherwood:
Yes.
Bethany Weathersby:
I'm so bad.
Molly Sherwood:
Don't know why you're asking me. In the background, I was like Let me help while she's talking. I'll try to do that match real quick in case I need to jump in and be like 26.
Bethany Weathersby:
I'm like, I need my six year old to be here to help me because she has better math skills than I do anyway.
Molly Sherwood:
I know.
Bethany Weathersby:
Okay. So let's say two weeks after that and you deliver with a hematocrit of 26. That's good because that's like anemic enough to maybe need a transfusion after birth, but not so anemic that the baby is in danger. So that's what he was talking about. You don't want to wait too long where you're delivering a baby in distress. That's what you want to avoid.
Molly Sherwood:
It's already a trip. I mean, going through birth is traumatic. It is stressful on a baby. So you want them to come out as favorable as possible, of course, if you can control it.
Bethany Weathersby:
Yeah.
Molly Sherwood:
Yeah. And then we also asked him about timing of delivery if you did not need IUTs. So I wanted us to share that too.
Dr. Thomas Trevett:
Typically if the baby has not had transfusions, we could go up to and including 38 weeks with those babies. But more often than not, there's some anxiety in terms of the baby becoming anemic over those last few weeks. And so we usually have babies delivered around 37 weeks.
Molly Sherwood:
That's helpful that he mentions that. It can get tricky because if you haven't had a high MoM, and especially one question we see all the time is if your titers are not critical, but the truth is the recommended delivery time, even in that case is 37 to 38 weeks. And that's even true. So the American College of Gynecologists has this super handy, it's a table of medically indicated reasons for early delivery and our condition is on it and it is listed as at risk if you have Alloimmunization at risk of HDFN, delivery is 37 to 38 weeks.
Bethany Weathersby:
Okay. That's good. That's helpful.
Molly Sherwood:
It is helpful to have that thought in mind. So even if your titer is one or two or four or eight, as long as your doctor and you have determined that the baby is either definitely antigen positive or maybe antigen positive, that means they're at risk. So the delivery is still recommended to be 37 to 38 weeks. So the only exception really is if you have proven conclusively that the baby is antigen negative through the dad's testing the dad through doing cffDNA testing and sending that off or some, it happens less often, but sometimes amniocentesis has happened. And then you do know the baby's antigen status definitively. But otherwise we're looking at 37 to 38 weeks.
Bethany Weathersby:
Right. And just to go over why they have that recommendation, there are several reasons, but the main ones are MCA scans are not super reliable after 35 weeks. So that just means we can't truly monitor the baby for anemia very accurately after 35 weeks. And then also the mom's blood volume grows exponentially towards the end of her pregnancy. Sometimes titers can spike. The baby also has more blood, which I think is easier for our antibodies to detect. And so it's just you are weighing this risk and benefit ratio. The baby is in a potentially hostile environment in our womb, which is sad but true. And so is the baby safer in or out? And that's kind of, I think throughout the pregnancy, the doctor's always thinking about that. Okay, when do we get to that point where the baby is actually safer out than in? And I think it's around 37 to 38 weeks if there has been no sign of any issues up to that point.
Molly Sherwood:
Yeah. And I also think it was insightful that Dr. Trevett said that anxiety-
Bethany Weathersby:
Yeah.
Molly Sherwood:
plays a role too.
Bethany Weathersby:
Absolutely.
Molly Sherwood:
There's something to be said for if the mom is extremely anxious. I know when I was- My most recent pregnancy, I had a bunch of just random things were happening that were making me feel totally powerless and stressed. I had multiple hemorrhages, I had kidney stones. It was just too many things that were going on. And I just kept feeling like I was tempting fate every additional day that he was inside. And so I think it's really important to weigh that aspect of the maternal experience too.
Bethany Weathersby:
Yes, for sure.
Molly Sherwood:
To sum up about the delivery timing, it can be hard to predict if you've had IUTs, but you work from the latest that your practitioner is willing to do an IUT and then kind of calculate out from the hematocrit at the time of the last IUT to plan for a delivery time. But generally maybe aiming to reach 37 to 38 weeks after an IUT might be the norm. And then if a baby is at the point of needing an IUT beyond 35 weeks, usually doctors just deliver. And then if you haven't had an elevated MoM or your titers are not critical, then an induction at 37 to 38 weeks should still be the plan.
Bethany Weathersby:
Yes. Or if your titers are critical I think and you haven't had elevated MoMs. Yeah. Okay. So great. We covered when to deliver and now let's talk about where to deliver, which is another big topic that patients often are asking about. And a question that we hear a lot in our patient community is, can I have a home birth?
Molly Sherwood:
Yes. I know. And I hate to deliver this answer because I totally understand that desire. And I think every woman has a ideals about what they would like their birth to be. And it's so hard to say, so many of us have dreams and expectations about how this will go, but it's really just not recommended or safe to have a home birth if you have an antigen positive baby or a baby that may be antigen positive regardless of titer. Your baby needs the cord blood drawn immediately after birth, they may need to spend some time in the NICU or under lights. And even if your titers have been low, that does not mean that your baby won't need intervention after birth. Do you agree?
Bethany Weathersby:
Right. Yeah, totally. I think the treatments for HDFN after birth are also very time sensitive. Meaning if you don't get them started soon enough, the baby can have lasting lifelong consequences. And so it's just not worth the risk. You need to have access to those blood tests and treatments immediately after birth just in case.
Molly Sherwood:
And since the guidelines are to deliver it 37 to 38 weeks anyway, you're likely to be in a scenario where you're going to be induced. So that would kind of be a hospital setting to begin with.
Bethany Weathersby:
Yeah, totally forgot about that part.
Molly Sherwood:
I know. I want to try to sprinkle nuggets in here of this is still your body, your baby, your birth, and you can find a way to have some say about how you want things to go during your delivery. And I hate to say it cause it sounds depressing, but manage your expectations about what's really in your control and what's not. But I think understanding that can be empowering, you know what I mean?
Bethany Weathersby:
Yes.
Molly Sherwood:
Like hinging your happiness of your birth on things that are not truly in your control, that could set you up for frustration and disappointment, but hinging it instead on your emotional reaction and your emotional preparedness and things like that that are more in your control could help you feel empowered even though many of us have to sacrifice our original ideals.
Bethany Weathersby:
Yeah, absolutely. And you can still have a say in what is happening in a hospital setting for your birth. I think often women feel kind of bossed around in healthcare settings, so it is kind of hard to speak up, but we can. We can have preferences even though we're at the hospital. If we don't want intervention or pain management, we can say that. We can still be in charge of our own body even though we're at the hospital for our delivery.
Molly Sherwood:
All right. We decided that a hospital birth is what's most appropriate in this situation in our condition, but how do you decide which hospital to deliver at or does it really matter?
Bethany Weathersby:
Yeah, that's another question that we see a lot. Should I deliver at this hospital or this one? And again, it really depends on your specific situation and what you and your doctor think is best. So like you mentioned earlier, Molly, babies with HDFN are often born early and therefore need extra monitoring and treatments after birth because they're dealing with some prematurity issues often, plus the HDFN. So delivering at a hospital with a good NICU is super important, or at least talk to your doctor about it. But having a plan to transfer baby to a hopefully close by hospital with a good NICU if you're not delivering at that hospital. For me, my pregnancies involved a lot of intervention. So we knew that the babies were severely affected by my antibodies, and I needed to deliver in a hospital with a level four NICU that, not just a level four NICU, but one that was familiar in treating HDFN.
A lot of wonderful NICU's still don't see HDFN often. And so my MFMs and all of my prenatal care was out of state. So we had to think, Okay, do I want to deliver close to home or in this hospital where my MFM team is where I know that they know how to treat HDFN after birth? So we chose the hospital out of state because again, the top priority was to make sure that I was safe and my baby was safe. And so even though it was inconvenient logistically for a lot of reasons, that's the choice we made.
And really quick, I had a NICU tour before I delivered. And of course, it depends where you are in the pandemic or where we are with Covid because a lot of NICU's don't allow that now. But you can also just set up a phone call with a neonatologist or the NICU head nurse to just chat about what it might look like if your baby needs to be in the NICU and ask them questions about how they treat babies with HDFN. Just get all of that out of the way ahead of time. And then also that will help you know where to deliver. If they're just completely clueless, then you can know, I think I should look elsewhere for a good place to deliver. But Molly, you had much lower titers and intervention free pregnancy, so I would love to hear about where you delivered and how you made that decision.
Molly Sherwood:
Yeah. So my highest titer in both of my Allo pregnancies was four. And so for my first one, I was mostly managed by my OB and she kind of passed me back and forth between the MFMs and her. She delivered at a smaller hospital right next to the big university hospital. And so the big university hospital was the level four NICU, but her hospital could only manage, they had a NICU, but only for 35 weeks and later I think was all they were equipped to treat. And so I kind of made a plan that if anything happened before 35 weeks, I was just going to march into the big university hospital and give birth there. But once we made it to 35 weeks, I felt okay.
Bethany Weathersby:
Yeah.
Molly Sherwood:
Also, I think a big piece of this decision making process is just your proximity to the nearest really good hospital because for my first birth, I did give birth in a nursery that was less equipped than others, but the level four NICU was a mile away. So worst case, that was an option. But had I not had that convenience, I probably would have from the beginning, planned for a more sophisticated NICU.
Bethany Weathersby:
Yes.
Molly Sherwood:
And then for my following pregnancy, there was too much going on. He was growth restricted, and I was getting transfusions for my own anemia, actually. Just lots of things. And I was like, No, I'm not messing with this. I'm going to level four NICU. So we planned on that from the beginning. I think I learned a lot and was able to think intuitively about what I needed and what my son needed. And I think that I spent so much time just reaching a place of peace and confidence in what I needed and what I was going to be asking and advocating for that when I went in for that induction at the level four NICU, I think even the nurses kind of sensed my vibe of like, Okay, this is a seasoned mom who's going to tell us what she needs. And they totally took a backseat and just listened to exactly what I said my body was doing and needing. You know what I mean?
Bethany Weathersby:
Yeah. Yeah. I wish there was a way for us to have that seasoned experience feeling-
Molly Sherwood:
From the beginning.
Bethany Weathersby:
Yes. Because I was the same way. It was like I felt that a lot more power I think going into it. Even though, like I said, I had a lot of intervention and really was not in control of much, but I felt confident in kind of leading the way.
Molly Sherwood:
Yes.
Bethany Weathersby:
And yeah, I wish all moms could have that from the very beginning.
Molly Sherwood:
Yeah. So let's talk about then preparing for delivery.
Bethany Weathersby:
Okay.
Molly Sherwood:
Pragmatically, in terms of planning for your induction, I mean, chances are, we're talking about an induction here.
Bethany Weathersby:
Yes.
Molly Sherwood:
One thing that is important for our condition is that you have your blood typed and cross matched with enough time to order the matching blood. So always there is blood accessible on the delivery floor to a mother giving birth because it's common that hemorrhages happen. Well, not common, but it happens often enough that it's important to have blood available. But for us, because we have antibodies, we have to make sure that any blood we may receive has already been cross-matched and typed to make sure it doesn't have the corresponding antigen that our antibodies would respond to, because that would cause a transfusion reaction in us. And that's actually, as an aside, that's the only risk to us that having antibodies carries is if we need a blood transfusion, we need to make sure it's the right blood that does not have the corresponding antigens.
Bethany Weathersby:
Right.
Molly Sherwood:
All this to say, sometimes you have to have your blood ordered from somewhere afar, and it might take a while. And I think it depends on your hospital. So in my hospital, they wanted me to come in the day prior to test my blood and cross match it and then order the blood in advance. But I think potentially in a more rural area, you may need more time. So I do think it's important to ask your doctor in advance, when do we need to have my blood typed and cross matched? Because it may not necessarily be the morning of your induction, and you don't want to be waiting on induction day for your blood to come in.
Bethany Weathersby:
Yeah, absolutely. And also they might need that blood for the baby as well. And that baby, the donor blood for the baby also has to be matched with your antibodies because your antibodies are still in that baby when the baby is born. And so you don't want to give the baby donor blood that will immediately be destroyed by the antibodies in his system. So that's also why that blood is super important, because we don't really know if the baby will need a transfusion right when they come out or not. The blood matching ahead of time, definitely talk to your doctor about that before delivery and let's go over some other tips for just preparing for delivery when you are dealing with an Alloimmunized pregnancy.
Molly Sherwood:
Yeah. I loved your tip about the NICU tour and just chatting with a neonatologist. So what else did you notice was super helpful for you?
Bethany Weathersby:
When I would go in to chat with a neonatologist or the NICU nurse, I think I usually actually spoke mostly with her because she would be more hands on with a baby anyway afterwards. But I had a list of questions all already written out and just went in with those questions. But a lot of them were just the basics of, will you test the cord blood? Will you test for these things? How will you support my breastfeeding? Are you going to give my baby iron? Please don't give my baby iron.
Molly Sherwood:
Yeah.
Bethany Weathersby:
Just things that you want to remember afterwards.
Molly Sherwood:
Wait. Explain the iron thing. I feel like we have to explain the iron thing.
Bethany Weathersby:
Yes. Okay. So this is just one of the most common mistakes I see. Not just me, all of us, right, Molly? I mean, we see this again and again. After a baby is born, they tend to give the baby iron supplements. And there's this misconception that a baby with HDFN who might be anemic or is anemic needs iron to boost those blood levels. But our babies do not have iron deficiency anemia, which is the most common type of anemia and the most type of anemia that they're used to seeing in newborn babies or young babies.
So our babies have hemolytic anemia, and that just means they're not low on iron, but they're anemic because their red blood cells are being destroyed by our antibodies. And actually our babies are at higher risk for iron overload because there's several reasons. One of the main reasons is that when they are given a blood transfusion, they are given adult donor blood, and adults have higher iron, they're more iron rich blood, and so they're given iron rich donor blood. And so the babies are often born with extremely high iron or ferritin levels already.
Molly Sherwood:
Yeah. So I feel like the tip is, if a doctor is suggesting giving the baby iron, you should make sure that they're verifying first by checking the ferritin levels. And chances are after checking that in the baby, it will actually be confirmed that the baby is not iron deficient. Right?
Bethany Weathersby:
Yes. Yeah. Okay. So yeah, just going in and with those questions already written down, this is preparing ahead of time. And then another tip is what to pack. Is there anything that patients need to pack that's different from packing for a normal delivery? And I don't know, maybe you have some ideas, Molly, but the only thing I could think of was kind of keep in mind that you might be there longer than a normal delivery. And so just keep that in mind. And also make sure to pack the patient booklets, which we probably need to talk about more. But we have these great patient booklets with all of the information that patients need to advocate for the right care. And so we have a post birth booklet for care for babies with HDFN. And so just having those with you when you go in to deliver can be so helpful.
And then some patients actually bring in two copies and give one to their care team and then keep one for themselves. And so you know, could pack those patient booklets. And also if your baby's in the NICU, something that was always helpful is the packing a onesie that has buttons down the front, and that way the wires, usually they have a lot of wires coming out, and so the wires can come out I guess the little spaces between the buttons, if you have a zip up onesie, there's no place for those wires. So I mean, most of the time our babies are just in a diaper if they're in the NICU, but sometimes you just want to put a cute little outfit on them, so the ones with the buttons down the front are helpful.
And then I always like to pack something personal for my baby, even though expecting them to be under the phototherapy lights. I always thought, what can I put on them? That's just something personal and sweet. And so the hats, the paci, hair bow, socks, I think those are the only things. Also, babies, again, in the NICU with wires all over them, it's nice to just see something personal for them, like a little hat that's just for them or their own blankets. So I always pack those. Anything that you can think of, Molly?
Molly Sherwood:
No. Actually a couple things for me, for the mother.
Bethany Weathersby:
Yes.
Molly Sherwood:
I was thinking of, so I had a C-section with my first son who was not an Alloimmunized pregnancy, but then after that I remember so often propping myself up on my elbows and you have no ab strength anyways so you're constantly leaning back on your elbows, you know what I mean? And the hospital sheets are so scratchy and you are there for a little bit longer. And my elbows were totally rubbed raw by then. And so-
Bethany Weathersby:
Oh my gosh.
Molly Sherwood:
My next two births, I brought a flat twin bed sheet that was actually comfy and just laid on that. And it was so nice to have something from home and so easy to pack. So I just always give that little tip because it's something that you wouldn't think of but it makes you feel more comfortable.
Bethany Weathersby:
Yeah, that's a great idea. Yeah, that's great. I also would always bring my heating pad because it just immediately gives me warmth and comfort. Yeah.
Molly Sherwood:
And you need the heating pad, and I don't even know what helps, but the cramps that you get after birth that are just best contractions.
Bethany Weathersby:
Yes. So bad.
Molly Sherwood:
Yes. Sorry, we have to warn anybody who might listen to this that you still have contractions after you give birth. It's terrible.
Bethany Weathersby:
I remember thinking, why didn't somebody tell me about this?
Molly Sherwood:
I know. No one told me. Well, so what's happening is your body's trying to shrink your uterus back down to size, and so it's just contracting like you're still laboring. And it's also brought on by the hormones that are released when you're breastfeeding. So I remember being doubled over while breastfeeding just because it was terrible cramping pain.
Bethany Weathersby:
Yes. So bad.
Molly Sherwood:
Yeah.
Bethany Weathersby:
Okay. Another tip is to just have, if you can, a partner or family member with you, because you are still going to be advocating for the right care, even during delivery and after. And that is really hard to do when you're recovering from birthing a baby. So if you can have someone with you and discuss ahead of time how they can help advocate for you and the baby afterwards, that's always really helpful. And then kind of just discuss, okay, if the baby is taken to the NICU, do you want that the partner or the helper to go with the baby or to stay with you? Just have a plan in place. And then also, if you are in a situation I was where you have to deliver out of state, you can call the Ronald McDonald House that's nearest to the hospital and set up a room for you if the baby is in the NICU, then the Ronald McDonald House is a fantastic place to stay. And you can also talk to your MFM ahead of time and ask him to help you get that set up before you deliver. Yeah.
Molly Sherwood:
Okay. I know this can be super overwhelming. It is a lot to remember, but we can help. And I hope we'll keep things pretty succinct in terms of stuff that you really should probably keep in mind when you're going in, but also those patient booklets you talked about.
Bethany Weathersby:
Yeah.
Molly Sherwood:
We have one for pregnancy and one for after birth. They have all those things you need to remember, and I think it'd be great. You can review them in advance, but then also give that job to your birth partner. They can review it too and kind of just have it in mind and help advocate for you, like you said.
Bethany Weathersby:
Yes, these patient booklets are so helpful. We've heard a lot of patients come back and tell us that they loved having them with them during their deliveries and hospital stays. It just gave them this level of safety that they really needed. So another really important way to prepare for delivery is to create a birth plan ahead of time. And Molly, I know that you kind of mastered that, I think at least in your last delivery with your youngest son. And this is also kind of leading us into the different ways to deliver as well, this idea of a birth plan. So can you just share how you made your birth plan ahead of time and then also learned how to still feel empowered during this birth experience that is high risk?
Molly Sherwood:
Yeah. I mean, well, firstly, my birth plan was very short. So I think it's key to just- And it's so hard, like we said, it's so hard to let go of all the things you read about delayed cord clamping and the importance of skin to skin within the first 30 minutes and making sure your baby tries to latch within the first hour. It's really, really easy to get caught up in your preferences for those things. And while I still think it's great if you desire to choose a few things that are critical to you, and maybe you do have an opinion and you've been informed about these things, it runs the risk of having you feel disappointed if those things are not possible. So I think that setting reasonable expectations is just critical. So for me, it was just focus on the baby, keep the baby healthy, draw the baby's cord blood, because we'll talk about that.
We want to make sure the baby's cord blood gets drawn and saves them a big heal prick because you want to get some information about their blood when they're born. And then for me, I just asked that they not offer me pain meds. I wasn't going to say anything gung-ho, like, Absolutely do not ever give me this thing. I just tried to say, You know what? I'm taking this into my hands. I'll make the choice. If I do ask for it, that's okay, but please don't offer it to me. And that was it. That was my birth plan. And my doctor jotted it down on my chart and had me sign it. I signed it, and she said they'll scan it in, and then nurses had it.
Bethany Weathersby:
Nice.
Molly Sherwood:
And it was very short. I don't think it's super helpful if you have a laundry list of must haves. And I also would add breastfeeding. I know I kind of said, Who cares if you get to breastfeed in the first hour? Of course, that's wonderful. But I was able to breastfeed all three of my boys for over a year, which was my plan all along. And I don't think I was able to nurse any of them within an hour of their birth.
Bethany Weathersby:
Yeah.
Molly Sherwood:
So yeah, there are things that, like you said, come with time. Looking back, you realize, Wow, that actually was not super critical for me to be so anxious about, of course.
Bethany Weathersby:
Yeah.
Molly Sherwood:
It's great to be informed and have a preference, but otherwise, I think just latching onto a few things that feel like they're within your control gives you the best chance of success and reward. And I say this even after... So that birth that I was talking about, my most recent birth, there are certain things I knew about my body that I was able to share with the doctors and the nurses right away. Once my water breaks, I think I'm going to deliver pretty quickly. So they were aware of that, and they totally took me at my word about that. And when it was time to be checked, and I was eight centimeters, but I felt very, very close.
I had two more contractions and I was like, Nope, it's time. It's time. And they didn't doubt me at all. They ran right back in and checked me again. And I think we just established from the beginning that I felt comfortable with my body's needs. And they completely, I think, picked up on that and respected it. And then following though, after his birth, and maybe I'll share about this in another podcast in a little bit more detail, but my placenta was retained, and so it did not deliver. And I started to hemorrhage after that. And it was 45 minutes or so of them digging in there and trying to pull out little bits of my placenta, which was more painful than the birth itself. And eventually-
Bethany Weathersby:
Sounds terrible. Oh my gosh.
Molly Sherwood:
We talk about maternal mental health support. I probably need some PTSD support from this.
Bethany Weathersby:
Yes.
Molly Sherwood:
I haven't done anything. It's terrible. Anyway, and I remember, Oh, this is another thing I wanted to talk about. So while I'm bleeding and they're in there, and I hate to describe in great detail how painful it is, but it's very, very painful. And they're trying to lay him on me and be like, Oh, he's so cute. Look at him. And I couldn't touch him. I was like, Please get him off me. He's going to fall. I can't, I was in terrible pain. I was crying.
Bethany Weathersby:
Yeah.
Molly Sherwood:
And it makes me think about how often we hear this narrative of, Oh my gosh, the first time you lay eyes on your baby, it's just the most miraculous moment of your life. I can say hand on heart, I did not feel that with any of my three births. I just didn't.
Bethany Weathersby:
Yeah. I think there's a lot of pressure on moms to have this ideal, very specific dream meeting with your baby, and then if you don't have that, you feel guilty or this regret or like, Oh, I didn't have a good birth experience because it wasn't that typical, the stereotype that we are kind of fed. But you fall in love with your baby over time, and that is really sweet.
Molly Sherwood:
Yes.
Bethany Weathersby:
I think just the months after you meet your baby, that's when the real, I think, relationship forms. Yeah.
Molly Sherwood:
That's so true. There's so many reasons why achieving that dream moment and that dream experience of birth are so difficult for any women, but especially for us. I mean, we're already going through this high risk, intensely emotional situation, and then you have to physically give birth. How are you supposed to feel perfectly elated and joyful the moment after you gave- It's crazy. It makes no sense. And then many of us have our babies, they have to go to the NICU or they can't be with us afterwards for one reason or another. And that's okay, because like you said, now is your time. Your time is now beginning with them. Now your love grows with them now that they're out, even if they couldn't be next to you, even if you were in the middle of experiencing whatever you were experiencing. So I'm definitely glad we're touching on this cause I think it's so important to share.
Bethany Weathersby:
Yeah, absolutely. In my case, it was really magical with my three youngest because our daughter was stillborn, and then we were told we could not have any more children after that. And so it just was this dream come true. Just the fact that we were able to have living babies, and that was absolute pure joy.
Molly Sherwood:
Wow.
Bethany Weathersby:
I think obviously in a different way from the normal birth and the way my babies were born, they're very different. My daughter, Nora, I was induced. The whole induction was three hours. She literally came out on the first push, and I'm always like her older brother, who was over 10 pounds, really paved the way for her.
Molly Sherwood:
Literally paved the way.
Bethany Weathersby:
Oh my gosh. Maybe that's too much detail there. But-
Molly Sherwood:
No, no, never too much. Never too much detail.
Bethany Weathersby:
But my birth plan was just have a living baby at any cost. In a way I was like, I don't even care what happens to me. I don't care. I want my baby to live and be alive and have a heartbeat when she's born. And that was miraculous. That felt miraculous. But all those things that you mentioned, I didn't get to breastfeed her right away. I got to hold her because I said, I really want a photo of her at me and her before you're taking her off to the NICU. And so we have three photos and the NICU nurse is standing right there waiting to whisk her away. And then my next baby was born by emergency C-section. And my husband wasn't even there because I was going in for my fourth IUT, he was four hours away in Alabama and the first time he saw his son was, I texted him while he was driving. He saw him in a text, which is terrible.
Molly Sherwood:
Talk about not an anti-climactic birth moment.
Bethany Weathersby:
But it was like, He's alive. He's alive, and he's here. And I didn't even get to hold him. I got to see him for one second and then they took him away. But I felt just so overwhelmed with joy because that was my main birth plan, was just have a living baby. And all of the rest kind of didn't really matter. But I know that that is due to my past experience with the stillbirth and all of the intervention that was involved in my pregnancies.
Molly Sherwood:
But that's so valuable, and it's really true in the grand scheme of things, no matter what in any pregnancy, just a healthy baby.
Bethany Weathersby:
Yeah. That's the goal. I mean, that's what we're doing, right? Having a baby, that's the goal. Yeah. That is what we're doing. We're having a baby.
Molly Sherwood:
That's all boys. Not to oversimplify, but no, really, I think it's just helpful to hear, Wait a minute, all of the hubbub about perfect this and perfect that, and setting this up and having somebody say and do and prepare and just have a healthy baby and you win.
Bethany Weathersby:
Yeah. And also I think the grief and the losses are part of this, I think, and not to be... You don't need to feel guilty if you're grieving or mourning the loss of what you expected. That's totally normal. And even with my last one, I really wanted to try VBAC, so I had the emergency C-section, and then my last one, I really wanted to have a VBAC. And I tried to convince my doctors, because I'm like, I birthed the daughter in one push. I can do this. And we really discussed it at length.
And because I would have to be induced and I'd had all these IUTs and needles in the uterus, they said, It's just your uterus could rupture. So do you really want to risk that in order to have the birth that you want? Or do you really want to ensure a living healthy baby? And so I had to grieve that feedback and grieve the fact that I had to have another C-section, even though I didn't want to at all. But what's the priority? It's the healthy baby. And my doctors really insisted that that was the best way to do that. So yeah, losses and grief are a part of delivery, I think, when it comes to this type of pregnancy.
Molly Sherwood:
I think so too. And just the process of not dropping, well yeah, dropping your expectations and finding a way to just be peaceful with what your outcome is in your pregnancy story. That is a loss. You know, do have to really work through and reconcile those things.
Bethany Weathersby:
So great tips and good reminders to focus on those few main goals instead of this long list of must-haves and try to hinge that, those expectations on what can I control. I was trying to think. Are there any little things that you were able to choose that you felt like that empowered you?
Molly Sherwood:
Let's see. One was kind of funny actually. So my favorite moment of my most recent birth, and I feel like I've already said this, but what strikes me as so important about my most recent birth is that it was with certainty, the most traumatic birth I have had.
Bethany Weathersby:
Oh my God.
Molly Sherwood:
But I still feel the most empowered about that.
Bethany Weathersby:
Yeah.
Molly Sherwood:
Because-
Bethany Weathersby:
That is so interesting.
Molly Sherwood:
I prepared so well and I felt in control of my birth process. But anyway, even though I was on continuous monitoring, because it was a VBAC for me, I was able to be in a tub. And that was great. That just helped a lot for some reason, for me, just with my pain. And I remember I have this moment, I'll probably cry talking about it. I'll never forget it. I was like, forehead to forehead with my husband, I'm going to cry. And that's okay.
Bethany Weathersby:
It's a special moment.
Molly Sherwood:
It is. And he was on the outside of the tub, and we were just sitting there together, and I was in so much pain, of course, but we just knew what was coming and what was about to happen. And it was just this total moment of calm together that I'll never, ever forget. And that was a really special moment. And also-
Bethany Weathersby:
So beautiful.
Molly Sherwood:
He had surprised me by learning acupressure techniques, I guess, on his own.
Bethany Weathersby:
So nice.
Molly Sherwood:
Well, he was like, Do you want me to try an acupressure technique? And I was like, Okay. And so he grabbed my hand and did something and it felt terrible. And I was like, Oh God, no. Stop. Do not. Stop. Don't do that. So I got to express my preferences there, and it was totally respected and heard. So apparently I do not want acupressure when I am in labor.
Bethany Weathersby:
Or at least your husband's version of acupressure.
Molly Sherwood:
Yeah, apparently he didn't do, I don't know. It was not right. So I didn't like that.
Bethany Weathersby:
But I think that's great that you got to have the water birth. Well was he wasn't born there?
Molly Sherwood:
No. They didn't want me to be. I don't know if that's true everywhere or just cause it was high risk, but they didn't want me to give birth in the water. But once he was close, I had to move to the bed, but I spent most of the more intensive part of the labor in water, which was really nice. Yeah.
Bethany Weathersby:
Yeah. Aw, that's such a sweet moment with your husband though.
Molly Sherwood:
That was really the best moment of the whole thing. Not even the actual birth itself. It was just that moment.
Bethany Weathersby:
Right. Yeah. Yeah. I was trying to think of anything, any choices that I was able to make during mine. One thing was that I really wanted my babies to have breast milk.
Molly Sherwood:
Oh yeah.
Bethany Weathersby:
Even though I couldn't breastfeed them. And so when they were not with me, I just was, I insisted I want them to have the breast milk that I'm pumping. And that made me feel really good as his mother, that I was able to make sure that he was getting that even though I didn't have him with me.
Molly Sherwood:
And also, some hospitals have this more accessible than others, but donor breast milk is sometimes an option for some reason, you know, you are just recovering and it's hard for you to worry about expressing or you're trying and you're not expressing enough at that moment. Some hospitals do have donor breast milk pretty accessible too, if that's something that's important to you.
Bethany Weathersby:
Yes. Yeah. Okay. So now let's talk about, I think we already talked about how, did we talk about how to give birth?
Molly Sherwood:
Oh no, no. You just kind of- It just happens. You just push it out and...
Bethany Weathersby:
Well-
Molly Sherwood:
No, no, we need to talk about the... Oh, what you need to ask for with regards to the cord blood when the baby is born.
Bethany Weathersby:
Okay, wait, wait. Really quick just let me say-
Molly Sherwood:
Or do we skip something?
Bethany Weathersby:
Let's do that really quick. Let me just say-
Molly Sherwood:
Yeah.
Bethany Weathersby:
Alloimmunization does not automatically mean that you have to have a C-section.
Molly Sherwood:
Yeah.
Bethany Weathersby:
A lot of women ask, Am I going to have to have a C-section? But there is a higher chance of needing a C-section with an HDFN baby compared to a non-high risk pregnancy, of course, because-
Molly Sherwood:
Sure.
Bethany Weathersby:
because you're not going all the way to 40 weeks, usually you're not. You're going to be inducing. And sometimes that can lead to C-section, or in my case, if the baby's going into distress, you need to get baby out quickly. That's a C-section. So I think there is a higher chance of needing a C-section, but just because you have antibodies, it does not automatically mean you will need a C-section.
Molly Sherwood:
Yes. That's a really good point to add. And it doesn't totally rule out, it completely makes sense in your case why a VBAC was not appropriate for you, but it doesn't take it completely off the table in every situation. So that's another thing to keep in mind.
Bethany Weathersby:
Yeah, just ask your doctor.
Molly Sherwood:
Talk about your- Something to talk about with your doctor.
Bethany Weathersby:
Okay. So Molly, tell us, so now our baby is born, and tell us about what immediately needs to happen then.
Molly Sherwood:
Okay. So I think it's important to focus on just what you will want to ask the care team for in advance before birth to say, Hey, as soon as the baby is born, make sure you draw enough cord blood and here's what you need to have drawn. So you want to have their bilirubin checked, you need a complete blood count, CBC, and that covers all the other little nuances, hemoglobin, hematocrit, neutrophils, thrombocytes, meticulous sites. So bilirubin, CBC, and they call it the DAT, it's called a direct agglutination test. It's also called the Direct Coombs test sometimes. And it basically tells if there are antibodies binding to the baby's blood, which would indicate that the baby is having active hemolysis and does have HDFN.
Bethany Weathersby:
Okay.
Molly Sherwood:
So bilirubin, CBC and a DAT. One caveat is that there have been reported cases in certain antibodies of a baby having HDFN and being affected, but still having a negative DAT.
So there's also an IAT, an indirect agglutination test. And so what that does is looks for free floating antibodies in the baby's blood, even if they're not necessarily bound to the blood cells. And we do go into, we have a provider primer, which is a pretty detailed piece of information for geared for providers, but really for anybody. And it talks about specific antibodies where this has happened, where a negative DAT might happen. So for the sake of just saying it here, it's Antibig C, little C, FYA good, HJRAM, and anti MTA antibodies.
Bethany Weathersby:
Man, I have never heard some of those.
Molly Sherwood:
It's like those must be the rarest of the rare.
Bethany Weathersby:
Yes, yes.
Molly Sherwood:
But it does happen. And so you can check. So even if you have a negative DAT, if there's any suspicion that the baby might still have HDFN, you can do the IAT, or you can just have the baby's antigen status blood typed, you know, can just see what their antigen status is. So also, I will add, it's not the end of the world if you don't get this. The alternative is just you stick the baby's heel. It's just a little unfortunate to lose the opportunity to get a bunch of blood at birth.
Bethany Weathersby:
Right.
Molly Sherwood:
And you don't have to stick the baby in this case.
Bethany Weathersby:
Yeah. And also, I wanted to point out that women who have had IUTs often have a negative DAT test after birth because that baby is mostly or fully donor blood, and the donor blood is antigen negative, antibodies are not attached to that donor blood. So if you have had IUTs, I mean, the Coombs test, it's really not important. Right, Molly? I mean, I don't see why it would be important.
Molly Sherwood:
By that point you've established that the baby is antigen positive.
Bethany Weathersby:
Yes. Or the DAT, I think I called it Coombs and DAT, but same thing.
Molly Sherwood:
Yeah.
Bethany Weathersby:
Because you know that the baby already has HDFN and yeah, is affected by the antibodies. Okay. So I think that's almost everything. Do we need a recap?
Molly Sherwood:
Yeah, let's recap. So you'll want to discuss with your doctor when the time to deliver will be, but chances are it'll be 37 to 38 weeks, assuming your baby is antigen positive or might be antigen positive. And it'll probably be an induction or a scheduled C-section if that's the decision that you make with your care team.
Bethany Weathersby:
Right. Or it could be an earlier delivery if you're having IUTs.
Molly Sherwood:
Right. I'm glad you added that. And we would also encourage you to kind of decide ahead of time where you'd like to deliver. Be thoughtful about the NICU. So if I had critical titers, I would be looking for a level four NICU, but that's personal choice and something you should weigh kind of depending on your access to care. And you also should make sure you plan to have your blood drawn and cross matched in time before your delivery so that the right blood is available on the floor for you should you need it at delivery. Another thing I want to add is focusing on the mental health aspect. Make sure you take some time to mentally prepare for your delivery, because I think that would be critical for your own empowerment through the whole journey. And once the baby is born, you'll want to ask them to draw the cord blood and have the DAT test run. If you aren't already certain that the baby is antigen positive. You need the bilirubin and the CBC a complete blood count.
Bethany Weathersby:
Nice. And one more thing. One more thing.
Molly Sherwood:
Yes.
Bethany Weathersby:
In our next episode, we will talk about what to expect in the weeks following your baby's birth. The one thing we did touch on in this episode that I want to recap is that babies typically do not need iron supplements, since this is not iron deficiency anemia. This is hemolytic anemia. So if your doctor suggests giving baby iron or including an iron rich formula or anything like that, just ask them to check the baby's ferritin level first because our babies are at high risk for iron overload.
Molly Sherwood:
Yes. So glad you added that.
Bethany Weathersby:
Nice, nice recap. Yay. We did it. If you, 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.
Recording:
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.