Molly and Bethany discuss options available to Allo moms and families, and Bethany shares her own past experiences considering each option and even attempting adoption.
Navigating maternal alloimmunization and having a baby with HDFN is a high-stress, difficult, and sometimes dangerous experience. Sometimes you may want to make a choice to navigate around these difficulties. What are your options? Molly and Bethany discuss options available to Allo moms and families, and Bethany shares her own past experiences considering each option and even attempting adoption. Remember, at the end of the day, the decision is always yours.
Show Themes:
Reference:
PGD for the K antigen in US, 2003: https://www.sciencedirect.com/science/article/pii/S0015028203011567
PGD for the D antigen in Austria, 2005: https://academic.oup.com/humrep/article/20/3/697/2356451?login=false
More Information:
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 Media Club
Bethany Weathersby:
The information shared on The Allo Podcast is not intended as medical advice. Your medical care decisions should be made in consultation with your physician, who is familiar with your specific case.
Molly Sherwood:
Hi, welcome to The Allo Podcast by the Allo Hope Foundation. I'm Molly Sherwood.
Bethany Weathersby:
And I'm Bethany Weathersby, and I almost thought we were going to have a murder mystery podcast.
Molly Sherwood:
All right. I need an explanation. I have no idea what you're talking about, but I need to know.
Bethany Weathersby:
Yesterday, I was pouring concrete in my front yard. That's another story. So we won't to go to that.
Molly Sherwood:
I was going to say, kind of wondering about that, but that's okay.
Bethany Weathersby:
So I'm out there and I just hear bloodcurdling screams.
Molly Sherwood:
Oh, my gosh.
Bethany Weathersby:
And it sounded like it was coming from the house across the street, like from the basement or something.
Molly Sherwood:
No.
Bethany Weathersby:
Yeah. So I just paused, and I could see around the corner other people coming out of their houses to see what's happening. Is someone getting murdered or kidnapped? And so it was very frantic. It sounded like someone was fighting for their life, literally. It was so bizarre. I'm like, what do I do? Do we call 911? But then it stopped, and then I was like, am I overreacting? I'm being silly.
Molly Sherwood:
Or are they dead now?
Bethany Weathersby:
Yeah. Or are they dead? But yes, yes. Yeah. Was it successful? So I just walked across the street to the other person's yard and was kind of creeping around their house. And then I heard it again with some loud thuds, and I was just like, okay, this is definitely a murder happening. So I was just about to call the cops, but then someone opened, they were on the second floor, opened the window, and this guy poked his head out and said, "Can I ask you a question? What are you doing in my side yard?"
Molly Sherwood:
What?
Bethany Weathersby:
So I just said, "Is someone getting murdered? Because I just heard bloodcurdling screams," and he said, "I'm actually recording heavy metal. Some kind of [inaudible]."
Molly Sherwood:
What? I feel like that guy should revisit his career path. Because you basically just told him that his music just sounds like he's murdering someone. Also, what if that was a coverup?
Bethany Weathersby:
I think that's what he's going for, though. No, but well, you're right.
Molly Sherwood:
Do you know him? Do you know [inaudible]?
Bethany Weathersby:
Oh, my gosh, Molly, not really.
Molly Sherwood:
Oh, shoot.
Bethany Weathersby:
His mom is great. I know his mom.
Molly Sherwood:
He lives with his mom?
Bethany Weathersby:
Actually, I don't know if he lives there or was just visiting. Because she was at work. She lives there. I don't know.
Molly Sherwood:
You might want to go check on his mom.
Bethany Weathersby:
I'm going to text her as soon as we're done recording this.
Molly Sherwood:
Yeah, just make sure.
Bethany Weathersby:
Because now I'm worried.
Molly Sherwood:
Just make sure.
Bethany Weathersby:
And if there is a murder that happened...
Molly Sherwood:
Oh my gosh, this podcast is going to be evidence.
Bethany Weathersby:
We will have to do a murder podcast.
Molly Sherwood:
Wow. Okay.
Bethany Weathersby:
Gosh, Molly.
Molly Sherwood:
It's getting serious. This is not where I thought this was going. I thought this was going to end for sure no one being murdered, but now I'm actually still not sure.
Bethany Weathersby:
He looked like he was recording heavy metal.
Molly Sherwood:
Okay. I don't know what that looks like, for sure.
Bethany Weathersby:
But who knows?
Molly Sherwood:
Well, maybe he had headphones or something.
Bethany Weathersby:
He did. He had metal hair. Not metal hair, but he had hair of someone who would be... yeah.
Molly Sherwood:
All right.
Bethany Weathersby:
Anyway, we are recording a different type. A very different type.
Molly Sherwood:
Yeah, so different situation. This actually could turn into a murder mystery podcast, because I would like to ask you a lot of details. And I also still don't know why you're pouring cement. Wait, will you just tell me really quick why you were pouring cement?
Bethany Weathersby:
We have not a lot of space on our front porch, but we do have a lot of children who like to play out there. And the flower garden area, for some reason, whatever we plant there keeps dying. It's like something's in the soil that seems to be killing everything we plant. And so I'm like, I'm going to make this a bigger front porch instead.
Molly Sherwood:
Oh, that's a good idea.
Bethany Weathersby:
Yeah. I don't know if that [inaudible].
Molly Sherwood:
That's a big project. I thought you were just putting in your post for your mailbox or something. That's a big...
Bethany Weathersby:
Oh no, I'm trying to make a bigger front porch.
Molly Sherwood:
Okay, trying do some things.
Bethany Weathersby:
YouTube is the way to go when you don't know how to do something, and you can't afford to pay someone to do it.
Molly Sherwood:
All right, I need some before and after. Maybe we'll put some before and after photos in the show notes.
Bethany Weathersby:
Sure. Let's do it.
Molly Sherwood:
Then we'll have snoops trying to figure out who your neighbor is if we do [inaudible].
Bethany Weathersby:
They will want to come and dig, dig a little [inaudible].
Molly Sherwood:
All right, so what is this episode? What is this?
Bethany Weathersby:
This episode is kind of unique, because we're talking about a topic that in some ways is very specific to our disease, HDFN, and alloimmunization. And then in other ways it's a more universal experience. And I think a lot of couples out there will be able to relate to this episode even if they have no experience with HDFN, because this kind of relates to couples who are unable to conceive or just get pregnant the natural way, I guess. That's definitely a more universal experience than HDFN, I think. So hopefully our listeners will want to hear about what their options are for continuing to grow their family, even if they are affected by this disease, even if they have very severe disease like me.
Molly Sherwood:
One thing that I think is super important to emphasize is that every family is going to have a different threshold for these options. It will depend heavily on the severity of their disease, how they perceive each of these choices to affect them and their dreams of what their family can be, and the resources they have available to them. For some families, affording IVF is way more difficult than traveling out of state for continued care for a high-risk alloimmunized pregnancy. And I even saw on our support group a couple of weeks ago now, a woman who is in a different country who said that it is more affordable for her to do in vitro fertilization, IVF, with PGD, pre-implantation genetic diagnosis, which we'll talk about today, than it is to have a well-monitored alloimmunized pregnancy with intra utero transfusions. So anyway, something to consider, but at least we can lay out the potential options, and our listeners can be aware and weigh what feels best for them.
Bethany Weathersby:
For sure. Before we dive into the different options, I want to quickly look at what the problem is in the first place. And I mentioned in the intro something about couples dealing with infertility, but actually this isn't really about infertility. So why do alloimmunized women even need to consider alternatives to conception when they are wanting to grow their family? And not every allo mom or family needs to even look into this, but why would they need to ever?
Molly Sherwood:
Yeah, that's a good place to start.
Bethany Weathersby:
Why would someone with alloimmunization need to look into other options for growing their family? Some women have severe disease, and I would say most of the time it does get more severe with subsequent pregnancies. What do you think, Molly?
Molly Sherwood:
Yeah, I think so, too. Most of the time.
Bethany Weathersby:
Yeah, not always, but I don't know if I've ever seen it getting less severe with each subsequent pregnancy. It doesn't work that way.
Molly Sherwood:
No, it's the same sometimes.
Bethany Weathersby:
If you have a severely affected pregnancy, lose your baby, or your baby needs a whole lot of intervention, or you have very early fetal anemia, then growing your family can be a lot riskier the traditional way, because you know the next baby will also, if you have an antigen-positive baby, the next baby will also be severely affected. So a lot of families just are not willing to take on that risk, but they still really want to grow their family. So that's the basics right there.
Molly Sherwood:
I also feel like I've seen, there are some women who just, even if, who are we to define what disease is really bad or bad enough to do this, but some women just feel like they cannot, they don't want to emotionally proceed through another allo pregnancy.
Bethany Weathersby:
Good point, Molly.
Molly Sherwood:
For them, they would rather try a different option that feels like something that would suit them better.
Bethany Weathersby:
Yes. I'm glad you brought that up, because this disease affects the baby, obviously, but it also really affects the mother emotionally, and it can have pretty devastating consequences. So yes, I've seen some women who actually had pretty mild pregnancies and they just said, "I can't go through the stress of that weekly MCA scan and not knowing if my baby will survive," and they couldn't do it.
Molly Sherwood:
That's a good place to start, because some allo women can just proceed with the typical approach to growing their family and try to become pregnant the OG classic way.
Bethany Weathersby:
How do you do that?
Molly Sherwood:
We can have a combo murder mystery, sex education, and allo podcast episode another time. Anyway, however you usually go about getting pregnant, lots of women can just go ahead and do that. And then they acknowledge that they then have to weigh the risk and stresses of navigating an allo pregnancy. Anyway, that's what I did, because I had low titer, so it made a little more sense for me to go ahead and dive in that way.
Bethany Weathersby:
And I think the majority of families do that, I think, even with these antibodies. And by the way, let's get a little weird here. Molly and I were conceived in very different ways. This feels so weird to talk about our conception.
Molly Sherwood:
[inaudible].
Bethany Weathersby:
We started with a murder, so this is just following the theme. One of us was conceived the old-fashioned way, and one of us was conceived through IVF, which was very high-tech at the time.
Molly Sherwood:
So high-tech, this is getting a little unsettling. Let's leave it as a cliffhanger. Let's leave it as a cliffhanger, and just see. We'll reveal that later.
Bethany Weathersby:
Can I give just a little hint first?
Molly Sherwood:
Yes. Okay.
Bethany Weathersby:
My parents were missionaries.
Molly Sherwood:
Okay. Bethany, all right. You put in the script that I'm supposed to do a facepalm, and I have no idea how I'm supposed to embody that in a podcast. Anyway, just please imagine me facepalming.
Bethany Weathersby:
I thought you put that in there, Molly.
Molly Sherwood:
I did not put in a facepalm. I don't even do emojis in my regular, unless my kid slapped the keyboard. I guess it's possible.
Bethany Weathersby:
I don't know.
Molly Sherwood:
I swear I didn't put a facepalm in.
Bethany Weathersby:
It's very possible that I did. Who knows?
Molly Sherwood:
Well, it doesn't matter. Phantom facepalm. I just really want to hear about how you weighed your options for growing your family. And it's cool that we have this episode right after Katie's episode, because she's pursuing IVF with PGD, and I know that was a really difficult choice for her and something that she's still processing even while she is making the decision to pursue it.
Bethany Weathersby:
Yeah, that's a really tough place to be after receiving a diagnosis of alloimmunization and then trying to understand what that means and usually having a pretty seriously affected pregnancy. Usually that's what leads you to get to this place of considering different options for growing your family, but then having these huge decisions about growing your family and taking on certain risks kind of looming over you, it's really hard to know how to move forward. Since I've been in that situation in the past, I just want to start by saying two things really quick.
Number one, this decision is yours and your partner's and nobody else's. You and your partner get to decide whether to grow your family or not in whatever way you feel best. And a lot of people, including some physicians or strangers on the internet, possibly your mother-in-law or distant cousin, who knows?, they often feel very strongly about your personal choices regarding your fertility and your family. I'm including myself in that. In the past, I have been too involved, I think, on my end in other people's personal family-growing decisions. I don't know why we feel permission to do that, but...
Molly Sherwood:
I know. I do, too. I feel it's like a common motherhood conversation topic, you just dive in and ask people. I know.
Bethany Weathersby:
Yeah. But I've had multiple doctors tell me in the past what I should or shouldn't do with my own uterus. Thankfully, Josh and I gathered information, we looked at all of our options, we prayed a lot, and then we made the decision that we felt was right. So that's the first thing I want people to hear.
Then the second one is try to be introspective and self-aware as you look at your different options. And it can be helpful to decide to at least look into every option, even the ones you are unsure of, because you never... Well, I would say most people don't expect to have to even consider these options when they're little or getting into a relationship with someone, and they think about growing their family one day. It's not like they're thinking about sperm donation or... Maybe some people have to, but most of the time that's not a thought process that you've gone through. And so it can be helpful just to decide "I'm going to be open and look into all the different options, gather information. I'm going to be open to new ideas," and make an informed decision between you and your partner. So that was very helpful for us. Because at first, I was just like, "No, I hate all those options. That's dumb. I don't want to do that. I want to just have a baby." And it was frustrating.
Molly Sherwood:
That totally makes sense.
Bethany Weathersby:
So the decision is very dependent on how severe the disease is. And like you said earlier, Molly, what kind of support and resources they have available to them.
Molly Sherwood:
For me, with low titers, it was kind of a no-brainer to just go ahead and try to navigate another allo pregnancy. Not to say I didn't have a whole set of emotions about it, still scary, but it just seemed the most reasonable choice for me.
Bethany Weathersby:
Right. And for us, it was very different, because my first sensitized pregnancy was so severely affected. My Kell titer was 1,024, and my daughter died halfway through the pregnancy. Our doctors told us that any future pregnancies with a Kell-positive baby would end with the death of our baby before viability. And so we had two living children, we'd always wanted five kids. So we were just stuck in this very stressful situation.
Molly Sherwood:
That sounds so hard, and I hate to say this, but it's not uncommon for allo women to hear similar advice from their providers, that they should not or cannot have more children. I think maybe it just stems from a general lack of disease awareness and knowledge of treatment options.
Bethany Weathersby:
Another thing to consider is whether or not you and your partner even want to take on any of this or make the hard decision to not pursue a larger family. I've seen some couples decide that to them feels like the right option, even though they would love to have more children or another baby, they just decide they can't go through all of that. So I guess keep that in mind. Even though I didn't want to, I also considered that. We thought through the pros and cons of that choice, as well.
Molly Sherwood:
That's true. That is another option, really.
Bethany Weathersby:
Yeah. Yeah.
Molly Sherwood:
Say you do decide you want to have another child, but you might want to pursue a different way. So how do we start? We list the main options for growing your family if you're alloimmunized and you want a different choice than just the old-fashioned way.
Bethany Weathersby:
Let's explain some of the basics and the abbreviations really quick, and then we'll go through each option one at a time. There's IVF, in vitro fertilization, and that comes with something called PGD, pre-implantation genetic diagnosis. Is that right, Molly?
Molly Sherwood:
Yes.
Bethany Weathersby:
That's an option. And then there's sperm donation, and then there's surrogacy and adoption. There's also embryo adoption.
Molly Sherwood:
Let's just talk at the end, or maybe throughout, I don't know, let's just talk about how to actually choose which option you went with. And I know you and Katie both really had to weigh the pros and cons. I want to hear more about that.
Bethany Weathersby:
Yes, my husband and I, we laid out every option. We had a big piece of paper and my journal, as well, and we wrote down every option. And then under each one we had a list of pros and cons. Because each one does come with some type of burden with it, whether it's financial, emotional, whether it's the risk you have to take on. So we listed those out so we could look at them. And then we discussed it without any kids around. We were alone, we could concentrate, and we prayed about it. We were very open with each other. Josh was just like, "I don't feel great about sperm donation," and he felt okay telling me that. So I think just being really safe with your partner about however they're feeling about it, it should be validated. First of all, the condition starts with a healthy mom and a healthy fetus. And there's nothing actually wrong with the mother physically, and there's actually nothing wrong with the baby physically, initially.
You have this healthy mom, healthy baby, so what's the problem? The problem is that when you put that baby in that mom, it becomes a dangerous environment for the baby. For the families who need to avoid HDFN in future pregnancies, there's several different ways to do that. You can take that healthy baby and put it in a safe environment that isn't dangerous, so it doesn't have the antibodies. And this can be done through surrogacy, or you can start a step earlier than that and make sure that the baby you do get pregnant with is an antigen-negative baby who won't be in danger in the environment, your womb. And this can be done through IVF with PGD, sperm donation, or embryo adoption. And of course, you can avoid the problem altogether by choosing adoption or foster care, something like that.
Molly Sherwood:
Let's start with IVF, in vitro fertilization, with PGD, pre-implantation genetic diagnosis. I like this one, because I was conceived with IVF. Ta-da.
Bethany Weathersby:
Yay. Big reveal.
Molly Sherwood:
Yay. First test tube baby.
Bethany Weathersby:
That's amazing, though.
Molly Sherwood:
I know. It's so cool. When it first was a thing, actually, the hospital I was conceived in, they probably have taken it down since then, but apparently they had a picture on their wall of the first couple hundred babies conceived with IVF, and I'm in that picture.
Bethany Weathersby:
That's amazing. Wow.
Molly Sherwood:
I know. It's so cool. And you never have to question if your parents wanted you. If they do. It's like, man, [inaudible].
Bethany Weathersby:
Exactly, exactly.
Molly Sherwood:
Anyway, we are test tube babies. At least that's what they used to call it casually. I thought it was cool. I say it in a positive way. So it's most often used in cases of infertility where, for a variety of reasons, the couple has a hard time conceiving naturally, but it also works in our application, too. So the mother has to take what's called superovulation medication. It makes her release a bunch of eggs at one time, and then they're removed in a minor surgical procedure. That's called the egg retrieval process. And then the partner gets to just go ahead and give his contribution in a very quick and lovely, pretty fun way, actually. So that's all he has to do.
Bethany Weathersby:
As always.
Molly Sherwood:
Yep. And then they combine the eggs and the sperm in a lab, and then they let them grow into embryos. Okay, so that's IVF. So then this is where you add the layer for us of PGD, pre-implantation genetic diagnosis. And what they do there is they just remove a single cell, one cell from the embryo, and they do genetic testing on it to select for certain things. So some families do this if they have hereditary diseases in their family and they want to avoid their child having those diseases. For us, though, you can do it to avoid getting a blood type that the antibodies will attack. So if you have anti K, you can select for baby that's negative for the Kell antigen. Huge caveat, which I know you'll add in that. And then also you would still do IVF if you were doing embryo adoption, right, Bethany?
Bethany Weathersby:
Yes, but you wouldn't have to retrieve anything from [inaudible].
Molly Sherwood:
So it wouldn't be IVF. You just [inaudible] in there.
Bethany Weathersby:
I guess, technically... What is that called? Transfer. They're just transferring embryos.
Molly Sherwood:
Okay. Just the transfer. So from what I could tell, the IVF with PGD for antigens was first done in the early 2000s. There's a couple articles that I'll link to here. They did it in the US and Australia.
Bethany Weathersby:
Okay. So the big caveat here, like you mentioned, Molly, is that this only works if the dad is heterozygous, which means that he has copies of both the K and k antigen. So that means each baby he conceives has a 50% chance of being Kell-antigen positive or negative. And that is the most common type, by the way. But if he is homozygous and only has the K antigen, then you know he's going to give that antigen to all of his babies no matter what. And so each baby he conceives has a 100% chance of being antigen positive. So for that couple, this is not an option. There will be no antigen-negative embryos to implant.
Molly Sherwood:
That's a great point. I'm glad you added that. And I'm not sure if I made it super clear when I mentioned selecting an antigen-negative baby.
Bethany Weathersby:
Right.
Molly Sherwood:
Because it's like magic. I feel like I need to elaborate. What they do is, they test every embryo for the antigen, and they only implant an embryo that tests negative for the antigen. So if your partner is homozygous, this option would not be an option for you, because all of your babies are going to have the antigen that corresponds with your antibody. But if they're heterozygous, then this is a great option for you, and you would end up implanting a baby that definitely will not be affected by your disease. There are other options if you have a homozygous partner or if you just want to choose something else. So let's talk about what's next.
Bethany Weathersby:
What if the dad is homozygous or IVF is too expensive, like it was for us? We looked into IVF with PGD, because my husband is heterozygous, and I was just like, I couldn't even imagine how wonderful it would be to know that I was carrying an antigen-negative baby, and I could have a normal pregnancy. So that was our first choice. And we set up an appointment with a reproductive endocrinologist. We met with her. She said it's possible, but it was so expensive. None of it was covered by insurance. It was just completely unattainable for us. My husband was in grad school at the time, I just worked part-time. So that was really disappointing. So some people just can't afford it.
Molly Sherwood:
So then the most common choice in that situation, well, for cost and for homozygous dad, would you say that's sperm donation?
Bethany Weathersby:
Probably, yeah.
Molly Sherwood:
All right. So I'm just going to briefly describe it, but then I have questions for you, because it's so uncommon to do assisted reproductive technologies for our disease. It's really hard for me to find resources online about this, actually. In the instance where you're using donor sperm, donor sperm,
Bethany Weathersby:
That sounds so gross. I immediately saw a spoonful of sperm in front of my face just like...
Eric:
I honestly thought you were going to say donor [inaudible]. And I was like, whoa. [inaudible] here.
Molly Sherwood:
A spoonful of [inaudible].
Bethany Weathersby:
That's even worse, Eric.
Eric:
I know. I'm so glad it didn't go [inaudible].
Molly Sherwood:
[inaudible] donation. I really want our listener... Is breaking the [inaudible]? Anyway. Hey guys, this is Eric, our producer.
Eric:
This part is getting [inaudible] Eric, your producer is being [inaudible] in this particular case. I don't have the right microphone set up. I'm sure it sounds terrible.
Molly Sherwood:
No, it's working. It's okay. It's good. Worth it. Where were we? In this instance, you use the donor sperm that's negative for the antigen, and then you have it administered, applied. Anyway, I don't know what the verb for that. And then you use intrauterine insemination, which is called IUI, for this. And there's kind of a couple variations of IUI that I have now learned about. So the simplest is just to get the sperm, and you just have it shoved right up there, just right when it's the right time in your cycle, and you do it without even washing the sperm first, kind of filtering it through to get the best of the best sperm. And that's actually called intracervical insemination, ICI. But I think people just lump it all together as one thing. And ICI has a slightly lower success rate than IUI.
By the way, I found stuff online about success rates, so I just want to caution folks looking into it that those success rates largely pertain to folks who have fertility struggles. And chances are, if you're pursuing it for our reasons, you may also have fertility struggles in conjunction, but chances are you'll have a better outcome because you're not necessarily pursuing it due to infertility. Anyway, other times you can also stimulate ovulation with those same hormones that we were talking about for IVF to make you release a bunch of eggs and have a higher likelihood of success also with your IUI attempt. But do they do that for women like us? Do they do the superovulation stuff?
Bethany Weathersby:
Usually they don't, because we don't need it. I feel like that would really increase your chances of multiples.
Molly Sherwood:
Totally. It definitely does.
Bethany Weathersby:
So if you don't already have fertility issues.
Molly Sherwood:
That's a good point. So it's probably not what they do.
Bethany Weathersby:
I've never actually heard of them doing that for any allo women.
Molly Sherwood:
That makes sense.
Bethany Weathersby:
Like you said, if you are struggling with fertility already, that might be an option.
Molly Sherwood:
Here's another thing I could not find online for the life of me. I could not figure out when and how they determine the donor sperm's antigen status. Because you still need to confirm that that sperm is antigen negative. So how do they do that?
Bethany Weathersby:
They test for certain things. The sperm banks test automatically for certain things with their sperm donors, I think major genetic conditions. And then they do look at the blood type, and they have that listed for anyone who is looking at that sperm donor. And so they do not test for these antigens automatically. So Josh and I, we did look into sperm donation, even though Josh was like, "I don't love it, but let's just dig in and get some information before deciding." We did look into it. We found a sperm bank that we liked in California. So we started even looking through different donors and seeing if there was anyone we liked. And so we called them and explained to our situation and said, "How could we possibly know if the donor was Kell-antigen negative?" And they said that they would have to reach out to the donor and ask if he wanted to come in for that blood test, and they would run it, but it was totally up to him, because it's not included in the typical screening list, I guess, that they have.
Molly Sherwood:
Okay. That's interesting. I was wondering. I was like, I wonder if they keep a blood sample repository of these donors. That would be great.
Bethany Weathersby:
That would be great.
Molly Sherwood:
[inaudible] sample. I wonder if some places do that anyway. I have no idea, but I'm glad you answered that.
Bethany Weathersby:
We did find one that we liked, and then they were like, "Yeah, we don't know. But if he said no, we wouldn't be able to get that from him." It would just be if he felt gracious.
Molly Sherwood:
Or you could get it from him, and then he might have the Kell antigen still, and then you start over with somebody else.
Bethany Weathersby:
Exactly.
Molly Sherwood:
Okay. That's interesting.
Bethany Weathersby:
And I did want to add, some women just have the sperm shipped to their house and they inseminate themselves, or they have the husband do the insemination at home. Yeah, just like turkey baster, basically.
Molly Sherwood:
Yeah. That would be pretty affordable, actually. Just paying for the sperm and just... I'm glad you said that. The next one we should cover is embryo adoption. Can you talk through that?
Bethany Weathersby:
Sure. When couples do IVF, often they have extra embryos leftover. You can't know how many embryos you are going to create with every IVF cycle. It's not something that you can control or predict. So some couples don't end up with any healthy viable embryos, and some have too many, they don't want to have 15 babies. So some couples are not sure what to do when they have completed growing their family, and then they still have embryos frozen. They don't know what to do, and they don't feel good about throwing them out, or they don't feel good about discarding them, and they don't feel good about giving them to science.
Molly Sherwood:
Or paying. Sometimes you can just pay to store them indefinitely, and that's expensive.
Bethany Weathersby:
Yes, you do. You have to pay every month for keeping them frozen. And so one option for those couples is to allow another couple to adopt or implant that embryo, and then that's their baby.
Molly Sherwood:
So it is like an adoption.
Bethany Weathersby:
It is. Except you get to be pregnant with your adopted baby.
Molly Sherwood:
True.
Bethany Weathersby:
It's really sweet, and breastfeeding and all of that. Josh and I really kind of liked this option of embryo adoption and looked into it a bit. It is cheaper than traditional adoption, but genetically it would not be my baby or Josh's, genetically.
Molly Sherwood:
So you still would have to do PGD on those embryos, right?
Bethany Weathersby:
Well, if you can find out if the donors, so there's an egg donor and a sperm donor. If you can find out that they are antigen negative, then you don't have to do PGD.
Molly Sherwood:
Maybe they're willing to do that. Okay.
Bethany Weathersby:
But either way, you should not implant an embryo unless you are certain of the antigen status if you want to avoid HDFN.
Molly Sherwood:
Yes, definitely. That would be a whole lot to go through just to still have to go through HDFN again.
Bethany Weathersby:
Right. Yeah. Let's talk about the next one: surrogacy. This is a way to use the mother's egg and the father's sperm. So kind of the opposite of embryo adoption, where genetically it is you and your partner's baby. And then you also don't have to worry at all about the baby's antigen status, because you will implant the embryo in a surrogate mother who does not have antibodies, and that will allow her to carry the pregnancy without the risk of HDFN. So this one, you're changing the environment.
Molly Sherwood:
I like that visual you presented. That's good.
Bethany Weathersby:
In the surrogacy process, don't forget that IVF still plays a role here. The biological mom still does have to do that hormone treatment and egg retrieval, and then the biological dad has to give sperm, and they have to grow embryos in the lab, but they don't have to do the pre-implantation genetic diagnosis. So then they implant that embryo in the surrogate. This works great for men who are homozygous for the antigen.
Molly Sherwood:
And it's still a test tube baby. That's good.
Bethany Weathersby:
Yeah. So cute.
Molly Sherwood:
Okay, so then the final alternative to pursue is a traditional adoption. I love this choice. There are babies already all over the world already in existence that need a family. So I recognize there's also, I'm making it sound like a lovely no-brainer, and it's not. There are many obstacles and fears involved with adoption, and I don't want to invalidate those. It's a really long process. Tons of paperwork, interviews, travel, fear of becoming attached to a child that may not become yours. You went really far down this path. I don't even know most of that story. Will you share a little bit of it?
Bethany Weathersby:
Sure. Josh and I actually decided to pursue another just natural pregnancy, but then for some reason, we had secondary infertility. We couldn't get pregnant, and we tried for, I think, 13 or 14 months, and testing showed nothing. Everything was normal. So that was bizarre. And we decided let's just do infant adoption. It was expensive, but we did a lot of fundraising for Christmas that year. We said, "Don't give us any presents. Just give us the money that you would spend on presents, and that will all go towards the adoption," things like that.
We saved our money. We were chosen by a birth mother, prospective birth mother, and she and I kind of hit it off, and we would text back and forth. We would chat sometimes. We visited her in person. We found out she was having a baby girl. We were so excited. We named her Scarlet May, and everything was going great. I even found out that I could induce lactation to breastfeed my adopted baby. That was amazing.
Molly Sherwood:
So cool. So cool.
Bethany Weathersby:
So cool, you guys. And there is a protocol if you want to look it up online on how to do that. But leading up to the baby's birth, I was pumping every three hours around the clock and freezing my milk and ready to breastfeed my adopted baby. And then of course, all the money we had saved and more, went to that adoption process. And then around the due date, we just suddenly didn't hear back from the mother, and no one could get in touch with her, lawyer couldn't get in touch with her. And about three weeks later, we discovered that she had given birth and placed the baby with a different couple on the other side of the country and didn't tell us about it. That was devastating. And our little boys, Liam and Asher, kept saying, "Where's Baby Scarlet? Baby Scarlet?" So yeah, that's how adoption went for us. And then we had no money, I mean we had no savings, and we were a little bit in debt. And so that was a real low point. And I found out I was pregnant three weeks later.
Molly Sherwood:
Oh, my gosh.
Bethany Weathersby:
But I remember when we were trying to decide... After Lucy died, we were trying to decide what to do. People said to us often, "Why don't you just adopt?" Just adopt. Just adopt. Those two words should not go together. There is no just, it's not easy for anyone, but it can be really beautiful. I mean, really. I feel like my heart really opened up to that journey, and a lot of my friends have adopted children. It's amazing. So yeah, please don't be afraid just because of my story of that adoption.
Molly Sherwood:
Wow. Now I want another podcast for that.
Bethany Weathersby:
It was insane.
Molly Sherwood:
I swear I will have this recorded officially. I am ready to write your biography when you are ready.
Bethany Weathersby:
All right. Okay.
Molly Sherwood:
Maybe when our children are older.
Bethany Weathersby:
No, right. That would be fun.
Molly Sherwood:
I know adoption varies so much, even based on what state you live in, what country you live in, and whether you're doing domestic within your country or international adoption. So what would you say, this is what I want to know, if you were talking to a friend who's starting to consider it, where would you tell them to look, or who would you tell them to talk to first?
Bethany Weathersby:
Yeah, you have to decide. We just got online and did research, and we had to decide if we wanted to do international adoption or domestic adoption, or we even looked into foster care, and you can adopt through foster care occasionally, but I don't know, actually, I'm sorry, I don't have a go-to...
Molly Sherwood:
I couldn't find anything consistent, either, because so much is state specific that I couldn't find a good blanket resource, but I still am going to link something.
Bethany Weathersby:
There are different options when it comes to adoption agencies and things like that. So yeah, just do your research, do a lot of research.
Molly Sherwood:
Yeah. So much research.
Bethany Weathersby:
I do want to say that each of these options, in my opinion, do come with their own burdens and things to grieve, I guess. For IVF, for me, it felt like it was sad to lose the natural conception process entirely. It felt very clinical and, yeah, it's hard. It's hard to go through. It's really hard to go through IVF. And so just trying to gear up for that process was hard. And then with sperm donation and embryo adoption, then you lose that ability to have a 100% biological child from both partners, which isn't everything. And to some people, that doesn't matter at all. But for some of us, that is something to mourn. And then with surrogacy, genetically, it is your child biologically, but someone else is carrying your baby, is pregnant with your baby. To me, that also felt like something to grieve a bit if we went that route. I just think it's good to look at each option and think, what am I willing to go through when it comes to the things that I'm, I guess, losing or giving up or grieving?
Molly Sherwood:
Which is so hard, because it's something we talked about in our delivery episode of so many... Well, pretty much every alloimmunized woman, if she is being properly managed, is not going to have a natural delivery. There's already things along your pregnancy that you're sacrificing. You're not going to have a happy-go-lucky pregnancy where you have one, maybe two ultrasounds, and you just naturally go into labor. And we talk about that kind of grief. You used a phrase in something we wrote the other day, I don't know if it was complex grief or...
Bethany Weathersby:
Complicated, yeah. Complicated grief.
Molly Sherwood:
Complicated grief. Because grief is not only mourning the direct loss of a person.
Bethany Weathersby:
And you're right, Molly. Some people might value having a natural birth over having a biological child. So they might choose sperm donation, and they just have a normal pregnancy and delivery, if there is ever a normal. There's a lot of unpredictability in childbirth, anyway. But some different people have different goals and values and things that they're willing to give up or not willing to give up. So it's definitely very personal choice.
Molly Sherwood:
I agree. Okay. I was trying to think through when we were thinking through this episode, what I would want to know as a listener to help inform my decision. And I thought it could be interesting to try to give out general ideas of costs. These are US costs, so this will be a game, because you already know so much about this. So I was going to have you first rank what you think is cheapest to most expensive. Then I will answer and give you some general numbers that I found online, and I'll link all the references in the show notes. Try to remember the list of all these things we just talked about: IVF with PGD, embryo adoption, sperm donation, surrogacy, traditional adoption. Go.
Bethany Weathersby:
Cheapest would be sperm donation, and then I think the next would be embryo adoption. And then the next would be... Ooh, this is tough. This is very tough.
Molly Sherwood:
And there's kind of circumstances that change these things.
Bethany Weathersby:
That's true.
Molly Sherwood:
It's not just one flat cost.
Bethany Weathersby:
So I would guess IVF with PGD, and then I would say traditional adoption and then surrogacy.
Molly Sherwood:
Yes.
Bethany Weathersby:
Really?
Molly Sherwood:
Yes. You got... Some of these overlap, so let me just go through. Sperm donation, from what I could find, especially if you do a mail order sperm and you just put that thing in at home, you're talking like 300 to $500. That's all you got to do. But from what I could find online, some of it goes up to like $4,000. That must be some super fancy sperm, like Harvard sperm. Then the next one, it kind of overlaps with IVF and PGD and embryo adoption. So embryo adoption looks like it's about $20,000, give or take. And then IVF with PGD, so IVF alone can cost 10 to 15,000, but that doesn't include the PGD, and that's another 6 to 12, so that we're looking at 16 to $27,000. So a little overlap there with embryo adoption. But IVF with PGD is still a little more expensive.
Bethany Weathersby:
And let me just say when we looked into it several years ago, it was more like, I think it was 10 to 12,000 for the embryo adoption, between 10 and 12,000.
Molly Sherwood:
That's pretty good. So that would get you right there in slot number two, squarely.
Bethany Weathersby:
Yeah. But again, that was over five years.
Molly Sherwood:
Inflation. Next is adoption, which actually comes with its own technicality, but from what I found, it can cost about 15 to $40,000 if you're doing a domestic adoption, and a little bit more for international. But you know what I didn't realize, and you kind of alluded to this, and you can tell me if this is true, but I've checked a couple places that verified that if you adopt from the foster care system, it's way less expensive, because the state covers all those costs. The stuff I was finding online is that it's almost negligible. I found 1 to $3,000. I don't know.
Bethany Weathersby:
I've heard that it's free, you don't have to pay, but you do have to go into foster care with the ultimate goal of reunification with the birth parents, not with the goal of adopting a child.
Molly Sherwood:
I see. I see.
Bethany Weathersby:
Yeah, that's the difference.
Molly Sherwood:
Because I was wondering, what am I missing here?
Bethany Weathersby:
There is a list of children in each state that are available to be adopted right now, and there's a website you can look at called, I think it's called the Heart Gallery for each state. Sometimes I just look through, oh my gosh. I'm just like, I want to adopt every one of these children. I love them all. You can see their photo and their name and some basic information about them, and they are available to be adopted, and they're older kids. They're not like one or two. It's not an infant, usually. Yeah, that's an option, too.
Molly Sherwood:
I'm glad you expanded on that, because I was definitely missing that piece. Okay, the last one, most expensive by far is surrogacy, because you're still paying for IVF, you're compensating the surrogate, you're paying placement fees, legal fees. So I saw numbers anywhere from 75,000 to 175,000. International surrogacy can be a little cheaper, though. Is that about what you expected me to say?
Bethany Weathersby:
Yes. Because we also looked into that just very briefly to see if it was something we could afford. So that was almost 10 years ago. It was 70-something-thousand, and it was like wow.
Molly Sherwood:
And you're like, no, no, thank you. That's a no.
Bethany Weathersby:
Although some people have friends who offer to be a surrogate for a charge, or family member sometimes, so that's also possible.
Molly Sherwood:
Right. That's true, too. I'll get all these resources in the show notes, and I'm going to link that website you just talked about, too, for the foster children.
Bethany Weathersby:
That'll be super helpful. And here's what I want to say now as we wrap up. You don't have to do any of these things unless you decide that it's the right choice for your family. Like I said earlier, there can be a lot of pressure like, oh, you can just adopt, or you have two healthy kids, why do you need more? Or why are you trying again, if there's risk involved? It's totally up to you, personal decision, or if you want to choose to take on another alloimmunized pregnancy, then we are here for you to support you through it all. And that's what I ended up doing, and took that on with a different set of doctors and proactive treatments and monitoring, and have three healthy antigen-positive babies with very severe disease. So you do have options, and we want you to know that this disease does not have to dictate the size of your family.
Molly Sherwood:
And I hope our listeners know that they can join our support group on Facebook, and they can also send the emails to just our info at email address, just info@allohopefoundation.org. And we see those. We see the emails, and we see the posts in the support group. Me and you are literally here for our listeners if they decide to do this.
Bethany Weathersby:
Yes. Yep. We're here for you, and we'll keep you guys updated on the murder mystery and let you know if my neighbor survived.
Speaker 4:
Whether you are a patient, provider or otherwise affected by antibodies in pregnancy, we are here for you. We have great resources on our website at allohopefoundation.org. That's allo spelled A-L-L-O Hope Foundation.org.
Molly Sherwood:
The Allo Podcast is a production of the Allo Hope Foundation. It was researched and written by Bethany Weathersby and me, Molly Sherwood. It is produced and edited by CJ Housh and Eric Hurst of Media Club. The Allo Podcast is sponsored by Janssen Pharmaceutical Companies of Johnson & Johnson.