Most episodes of the Allo Hope Podcast discuss the effects of alloimmunization on mom and baby, but on this episode we talk to partners. Bethany and Monique interview eachother’s partners and discover how they found out, what they felt, and how they supported their wives and children during the difficult pregnancies. Visit Bethany and Monique’s individual story episodes to learn more about their alloimmunization journey.
Most episodes of the Allo Hope Podcast discuss the effects of alloimmunization on mom and baby, but on this episode we talk to partners. Bethany and Monique interview eachother’s partners and discover how they found out, what they felt, and how they supported their wives and children during the difficult pregnancies. Visit Bethany and Monique’s individual story episodes to learn more about their alloimmunization journey.
Episode themes:
Allo Hope Terminology Library https://allohopefoundation.org/library/terminology/
Guests: David Kinney and Josh Weathersby
Research for this episode provided by Bethany Weathersby and Monique Kinney of the Allo Hope Foundation. Find more information at https://allohopefoundation.org/
The Allo Podcast is produced and edited by
Bethany Weathersby:
The information shared on The Allo Podcast is not intended as medical advice.
Molly Sherwood:
Your medical care decisions should be made in consultation with your physician who is familiar with your specific case. Hi, welcome to The Allo Podcast from The Allo Hope Foundation. I'm Molly Sherwood.
Bethany Weathersby:
And I'm Bethany Weathersby. How are you today, Molly? How's it going?
Molly Sherwood:
Well we haven't planned about what I should say because I'm looking at our show notes and it just says, "Hilarious banter," which is what we usually put in for what we're supposed to do right now. And then usually we fill it in by that time, but I think we're just tired. And you're tired, I know, because you were working on that presentation late last night.
Bethany Weathersby:
Yes, which I didn't finish. So this is not super hilarious banter, actually, about my presentation.
Molly Sherwood:
Well, it's funny because it's unfortunate, I guess.
Bethany Weathersby:
Yeah. To you. To you.
Molly Sherwood:
I know, it is. Yes. Slight inconvenience to me. It's a great burden to you. So very sorry.
Bethany Weathersby:
Right. Just a crushing weight with...
Molly Sherwood:
Okay. Well, I guess we should get things going so that you can get back to getting ready for your presentation.
Bethany Weathersby:
Okay.
Molly Sherwood:
Right. Are we ready? I cannot wait.
Bethany Weathersby:
Yeah. Yes. Yeah. I'm really excited. This episode is very special because we have some unique guests and way back when we were first planning The Allo Podcast, we decided that we wanted to share the true disease burden and real life experience from different perspectives.
Molly Sherwood:
Which is why we have interviews with patients and doctors and we interviewed each other.
Bethany Weathersby:
Yeah, yeah, exactly. And if you look at the Allo, look at me, Alloimmunization and HDFN journey. There are a few people, a small handful of people who are affected most by the disease.
Molly Sherwood:
Yeah, you're right. And we talk a lot about the mother because she's kind of at the center of all the prenatal tests and the procedures and monitoring, and even the advocacy. But she isn't the only patient and she isn't the only person who's deeply affected by this disease.
Bethany Weathersby:
And so we couldn't interview a baby for this episode, obviously.
Molly Sherwood:
Yes, we could try. But I don't see that being good content, very adorable content. But I don't think that would really work for a podcast.
Bethany Weathersby:
I mean, it would be incredible though if... It would be incredible content if we could actually get a baby to give their firsthand account of what it's like in our hostile uterus.
Molly Sherwood:
Yeah. Can we interview that baby from our IUT episode? Who'd grabbed the meet, right? Yes. Dr. Moise said grab the, Or no? What did he do?
Bethany Weathersby:
The sword coming through the ceiling.
Molly Sherwood:
Man. Where is that baby?
Bethany Weathersby:
I don't know. I mean, I do think about my kids and what was happening in their small developing brain when they're in their safe, warm, comfortable environment and then suddenly they're just pierce with a needle.
Molly Sherwood:
And now we're laughing about it. But I don't know my, I'm curious. No.
Bethany Weathersby:
Hilarious banter.
Molly Sherwood:
There we go. We got it. Okay, good. Covered.
Bethany Weathersby:
Okay. So we did not get to interview any babies, but we did get to interview some baby daddies, actually. Nice.
Molly Sherwood:
Sorry, I came. Maybe we do need to start doing video recording cause our producer saw that until just now when he is about to follow the floor. Laughing. I think he's crying guys. Okay.
Bethany Weathersby:
Oh my goodness. But it really was a great opportunity to interview our husbands who helped us through our really stressful pregnancies. And I got to interview Monique's husband, David Kenny. And then we had Monique interview my husband Josh.
Molly Sherwood:
Yeah. And this is perfect because it's coming right after Monique's episode, which we just aired LA the week prior. So yeah, this was a great opportunity to learn about the experience from the partner's perspective. And I'm just super interested to learn and hear about what they learned in their responsibility as fathers.
Bethany Weathersby:
Right? Yeah. It's a perspective. We just don't hear much, unfortunately. And it was really kind of enlightening. Both of the men said that they found these unexpected moments of gratitude in really difficult times in their life. So Molly, do you want to give us a hand guiding us through those interviews?
Molly Sherwood:
Yeah. Okay. So let's start with your husband, Josh. So you guys now have five living children, and after you gave birth to your first two sons in Tuscaloosa where you live, it was your next pregnancy with Lucy where you found out you were alloimmunized. So let's hear how Josh found out about your antibodies.
Josh Weathersby:
My wife's ob-gyn said, we have a pretty dire situation and we're going to have to transfer you to maternal fetal specialist. And so that's when we found out what it was. That's when we started researching. That's the first time I'd ever heard of it. But just a test came back positive from the early blood tests.
Monique Kinney:
How did that make you feel? Was that overwhelming, confusing? What was going through your mind?
Josh Weathersby:
That was really scary. And I mean, I thought we'd had such relatively straightforward pregnancies before. I didn't really know what to expect. So we just both started to learn about it. But yeah, I really didn't have any idea what we were getting into.
Monique Kinney:
I've heard some dads say that they feel guilty because this happened or they may have given the baby the antigen. But I've also heard women say that they feel a big burden of guilt because their own body is attacking their babies. When you realize that you could pass down that antigen to your baby, did you struggle with guilt or did you ever feel like your wife maybe to blame in some.
Josh Weathersby:
Way? No, no. I never felt either guilty or that she was guilty in some way. It's just something that happens. But it did, It certainly made the decision for both of us to get pregnant extremely serious. But I did not ever feel guilty or think that there was any guilt at all for anyone.
Monique Kinney:
I'm glad. Did the experiences kind of draw you closer together as a couple?
Josh Weathersby:
Yeah, I think so. It was very, very difficult to just stressful for the entire pregnancy and for some time after. But yeah, I think so.
Bethany Weathersby:
So David, how did you find out that your wife had red cell antibodies? And what was your reaction when you found out?
David Kinney:
We found out during the early prenatal testing for our second. And it was just, What is that? Because I'd never heard of anything like this before. There was a midwife we were seeing said, in her few decades that she had been working as a midwife, she'd never seen E cause problems. So that was nice. Started seeing a little bit more of what it was and what could happen. It was nice that we had her saying that this is probably not going to cause problems. A lot of reassuring there. But we still, as Monique started pushing for more, she started looking into it with her college library into the research papers. And we found out a lot of things pretty quick on this.
Bethany Weathersby:
So is that how you kind of learned about the disease was mainly through Monique?
David Kinney:
Yes. She was able to get the research papers and some of them, thankfully she had some medical history cause I had no idea what was going on with most of, I look at it, I couldn't understand it, but she could for the most part.
Bethany Weathersby:
I've heard her say that when she first found out she just handed you a big stack of papers. Do you remember that? They weren't really in order or anything?
David Kinney:
I don't recall being handed a big stack of papers, but I recall seeing some of it's like, what does this mean? I couldn't understand what it was saying.
Bethany Weathersby:
Do you think it would've been helpful to have resources other than your wife to learn from? Resources that we offer through the Allo Hope Foundation?
David Kinney:
Absolutely. Especially being able to have some of the medical language translated into more common language so people can understand it a lot easier. It would've been amazingly helpful.
Molly Sherwood:
We often hear that the dads feel guilty for passing on and offending antigen or that mothers feel responsible for their bodies attacking the baby. But like Josh, David did not experience guilt or passed blame and he didn't feel either were responsible, neither of them had control over it or chose for this to happen. But he did feel a responsibility to advocate for his baby. And for Monique.
David Kinney:
That was difficult, especially with our third when she started having some of the high MLMs with some signs of anemia. It's like, okay, what do we do here? Trust the doctors are saying that this is not something that we need to do intervention with yet. Or do we really want to push for something more? And I really didn't know the right way to go. And thankfully she's fine and there wasn't any serious problems that developed from that. But it was still just a frustrating, I don't know what to do. I can't do anything to help here.
Bethany Weathersby:
Yeah, we know that feeling well. So do you feel like Monique and your babies received the right care during pregnancy and after birth?
David Kinney:
Well, for the most part, yes. I remember going into give birth to our second and she had this folder of research articles and some of the tests that she wanted to run and nurses and the midwives there took that and they were like, That's great, where we can do all this. Not a problem. And that was an amazing experience that they took our concerns very seriously and were willing to just run a few extra tests or maybe do something a little bit early. But with the third, we switched to a hospital that had a NICU in case there was a problem trying to get a better hospital. But we got caught in this. That's not how we do it here. No, we don't do it that way. That isn't our policy. And it's like, I don't care what your policy is, this is what needs to be done.
Bethany Weathersby:
Were you able to help Monique advocate for the right care when that was happening? Or did you just let her take the lead?
David Kinney:
I did let her take the lead, but it is something that we talked about. So I may not have been speaking up necessarily, but she knew that I was supporting her with that. Cause it is something that we had talked about ourselves before we really tried to push forward with the doctor.
Bethany Weathersby:
So let's talk about the kind of emotional burden that you might have experienced. Is there anything that you wish you could have expressed but you felt you weren't able to because you had to be the emotional rock for your wife? Did you feel like you had to cope on your own with anything without the support from Monique?
David Kinney:
No, I don't think so. There was times that I really felt at a loss and I didn't know what to do or what she may have needed from me.
Monique Kinney:
How about you, Josh? Did you feel like there was anything you weren't able to express because you had to be strong for Bethany?
Josh Weathersby:
That's only really true after we lost our baby with our first sensitized pregnancy, because I was in graduate school kind of trying to live off of both a $1,500 a month stipend and whatever work I could cobble together. We had two small children. I didn't really take any time off of school, a couple of weeks. So I feel like I had to just continue to do everything just to keep us above water for a while. So I think that's probably the only time where I felt I kind of had to push things down and be the stability. I don't think that's true of the other pregnancies, even though they were sort of logistically much more difficult, I felt much more confident in the care that we were receiving and I don't really think that was particularly true of those. But yeah, certainly the year after we lost our daughter.
Monique Kinney:
Josh, I know you and Bethany lost your first daughter to HDFN halfway through the pregnancy and were told that you wouldn't be able to have any more biological children. I'm sure that was difficult because you lost not only your child, but also your hopes and dreams and plans for your family. How did you go through the grieving process and also support Bethany?
Josh Weathersby:
I mean, that's difficult question. I mean, it was a sort whirlwind of a year because we did pretty quickly start looking into other options. So it feels like it wasn't a long time that we were kind of sitting with the idea of no more biological children. We were kind of making plans. We definitely were not going to give up on having children in the future. But yeah, it was a very intense year of grief, but also of trying to figure out what to do next and looking into a lot of different options.
Monique Kinney:
Do you wish that you were able to take more time to grieve and to process through? I know you said you were in graduate school and that was a busy time.
Josh Weathersby:
Maybe I'm thinking back on it. I remember talking to my professor who was kind of my main advisor and he was telling the story and he just shook his head and said, I got to be honest with you, I don't even know what you're still doing here. I would've dropped out immediately. But I think actually continuing with school gave me some kind of, gave me a schedule and gave me some stability. It wasn't... Graduate school's difficult, but it was a master's degree. It wasn't a PhD. And so I was able to be home a lot. But I think it actually maybe helped me to keep going.
Monique Kinney:
Sounds like school for you was an outlet in a way to keep moving forward and to keep being busy and to just feel like you maybe if you don't have control over the things happening with your daughter, that at least you could still go through school and finish that for your family.
Josh Weathersby:
Yeah, I think it was helpful. It was helpful to have something I had to do every day just to kind of structure my days, but I didn't sort of dive all the way back into it. I kind of feel like I was only half there sometimes in graduate school. But I think it was a use... It was a good thing that I stayed. I do think it helped rather than hindered the grieving process.
Monique Kinney:
How did you feel when Bethany told you that she wanted to have more babies?
Josh Weathersby:
I knew that she, it wasn't a surprise to me at all. When we talked about having more biological children. That was scary. But we had had some reassurances that it was possible and we had talked to Dr. Moise. But yeah, it was still really terrifying. But I know that she, especially after Nora and our going through the entire pregnancy in Houston for the next two, I knew that she knew exactly what she was getting into and that it was just much scarier for her than for me. I cannot compare my experience of a sensitized pregnancy to hers at all. So she knew what she was doing and I was all the way on board.
Bethany Weathersby:
So after Lucy died and we knew we wanted to grow our family, we looked into, I feel like we looked into every single option and considered them as possibilities. So one of the most common options that doctors suggest to their alloimmunize patients is sperm donation. How did you feel about using a sperm donor to avoid HDFN with our future pregnancies?
Josh Weathersby:
That was my least favorite option, to be honest. But I was willing, and we did look into it for a while, I think then we kind of turned to adoption as a possibility while still kind of keeping in mind the possibility of biological children. But yeah, I have to admit that was not my top option, but I was certainly willing to do it.
Molly Sherwood:
Even a healthy pregnancy can be stressful. A mother's mind is filled with running questions, like, am I doing everything right? Is there something I forgot? When's the last time my baby moved? And then during a pregnancy with complications like HDFN, that stress can really be magnified with all the added issues of this disease. But even in the midst of that struggle, there can be beautiful moments. And David talked about two specific things that he looks back on fondly when he's thinking about he and Monique's, allo pregnancies.
David Kinney:
I mentioned with our first effect of pregnancy, you brought in this folder and gave it to the nurses in labor and delivery and said, These are some things I want to do. And their reaction was just incredibly positive of absolutely we can do that and get these done. The other one is, same thing with MFM. Dr. Austin, you brought in articles and you say, Hey, can you read, these are what I want done, this is what I'm concerned about. And he again, was excited that it seemed, he was excited that he had a patient who was interested in the disease and had taken the time to get educated to know what was going on. Whereas what doctor with our third child seemed to talk down to us as, No, this isn't how we do things. This isn't how it's done with him. He seemed to address us much more as equals who he could have a conversation with.
Bethany Weathersby:
So would you say the doctor's attitude or bedside manner really affected the whole experience?
David Kinney:
Absolutely. When you've got a doctor who is willing to engage and talk to you as an intelligent person who can understand things, it makes a big difference than just know that's not how we do things.
Bethany Weathersby:
We've had similar experiences where that made all the difference in the whole experience. I think with our babies, and honestly for us, it directly affected the outcome of the pregnancy, whether our babies lived or died too. So with my pregnancy after Lucy died, I had to relocate to Houston for five months in order to receive the right treatment, which was a 10 or 11 hour drive away. And at the time we had two boys, ages four and six, and so I had to take the four year old with me. And then Josh had to stay home with a six year old because he was in school and Josh could not take off work. He had to continue working to provide financially for us. This is not uncommon with this disease, by the way. A lot of families have to travel and sometimes are separated. It's really hard.
Josh Weathersby:
That was tough in the beginning for sure. In the summer I was able to be there a lot more. And that's actually a really... That's a time I still look back on very fondly living in the Ronald McDonald house. All crammed together in a basically little hotel room. But in that community of the people who were there being right in downtown Houston, actually, I don't remember that as even being a bad time. Even though there was the stress of, I guess maybe I felt very confident in what Dr. Moise was doing. I knew the danger, but I did feel pretty good about how he was taking care of us.
And so fortunately because of my job teaching at a university, all three of our pregnancies with a lot of IUTs, I think most of the IUTs happened over the summer, so I was a little bit more available. But that first part was pretty stressful because I think you left. We were approaching the gestational age where we had lost our daughter. And so the beginning of it was really tough. But I actually, I look back on that pregnancy overall very fondly. I really liked our experience in Houston.
Monique Kinney:
Josh, what advice do you have for other partners in this situation?
Josh Weathersby:
Yeah, I think you got to find out, you got to do research and make sure you understand what's going on and just however you have to be there for your partner, because some people require kind of minimal intervention. In our case, it's a very, very complicated and painful process. And so you just have to drop everything and do as much as you can to kind of shoulder the load because it can be very, very difficult physically and emotionally and it's long. So you just have to make that your priority and advocate when you can.
I know that very often, Bethany was the one that was pushing for various things. But one of the things that often we had trouble with is the same with the neonatal care, the NICU care. We had a lot of trouble getting them to understand that they should not do the thing that they are trained by default to do. And I had to do that because especially after a Callum in August were born by C-section, Bethany couldn't go down to the NICU for a couple days. So I had to be the one that kind of went there and said, This is what you have to do. You have to trust me on this. Or here's who you need to talk to. Step up. In those situations when...
David Kinney:
I would reiterate, get educated on this, who, as much as you can, and don't put all of the weight on the mom to fight for this, you need to know what you're talking about too. So you can discuss some things with her and you can step up. If she's not available at that time, especially immediately after birth or for something else going on that she can't speak for herself, you need to speak for her.
Molly Sherwood:
We cannot make this point strong enough. Self-advocacy is your best defense and it's a rare disease. Even experienced MFMs don't see it often. So moms and their partners need to support each other to build up their education and advocate for the right medical care.
Josh Weathersby:
Even just last night I was talking, I was giving a talk to some doctors and I kind of had to explain what HDFN was too. Cause it's just not their specialty. So yeah, I just keep it as simple as I can. My wife's body attacks the baby if it has my blood sight.
Molly Sherwood:
Thank you again to David Kinney and Josh Weathersby for their time and for being so open about this emotional experience. I think when I was listening to this, I'm reflecting on how women can feel kind of alone, even in their own household during these times. I know I kind of did, but showing this dialogue, I hope might help partners open up to each other or just open up to the people close to them and seek their support and learn what their reactions are and their thoughts.
Bethany Weathersby:
And as takeaways, let's try to remember that our partners have their own experience with this disease and it's different from ours. But they're going with us through this journey, that's really tough. And they might feel guilt or even disconnection from being able to help. Cause they are, I mean, they can't really actually physically protect and that's hard. That's so hard because it's their wife, their loved one, and their child. But along the way, there are still really beautiful moments to be shared.
Molly Sherwood:
If you, your partner or someone close to you, has antibodies in their pregnancy, we are here for you. We have a great resource library on our website@allohopefoundation.org. That's spelled Allo, A-L-L-O hopefoundation.org. Thanks for listening. The Allo Podcast is a production of the Allo Hope Foundation. It was researched and written by Bethany Weathersby and me, Molly Sherwood. Thank you also to Monique Kinney for additional research and writing for this episode. 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.