In part 1 of this special two-part episode, Bethany and Molly sit on the floor of Molly’s bedroom with guest Rose Murage, a native Kenyan with a harrowing pregnancy journey that is ultimately a beautiful testament to the grace of humanity,
This special two-part episode of the Allo Podcast is intended for our regular listeners and for those who are unfamiliar with alloimmunization. A beautiful testament to the grace of humanity, Bethany and Molly sit on the floor of Molly’s bedroom with guest Rose Murage, a native Kenyan with a harrowing pregnancy journey. Rose shares the pain of watching her first two children die tragic, inexplicable deaths. But when Rose reached out to Bethany for help, a new journey began to diagnose Rose with red cell alloimmunization and find a way towards a living baby in a country with limited resources. Join us for the first part of Rose’s story as she tells of her life in Kenya, the short physical lives of Alexis and Max, the obstacles she overcame to seek treatment, and the gift of an American doctor and a network of activists to heal a family.
Definitions for the show notes as they appear in the episode:
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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. I'm Molly Sherwood.
Bethany Weathersby:
And I'm Bethany Weathersby. And today we are so excited to share a story that has changed our lives. And we get to do this in-person, which is crazy when you think about where we all live, right?
Molly Sherwood:
It's so fun. Yes. This is wild.
Bethany Weathersby:
Right now we're sitting here on Molly's bedroom floor in Kentucky. We have me, and Molly, and Rose from Kenya. So how in the world did we get here all together?
Molly Sherwood:
Yeah. It's not easy to bring a Kenyan to Kentucky. That's not something that happens every time.
Bethany Weathersby:
Right.
Molly Sherwood:
So this episode has been, for us, so long anticipated. And I think we even alluded to this story several times this season. So this is going to be something that I think touches a lot of hearts, whether or not they have a personal relationship with alloimmunization and hemolytic disease of the fetus and newborn. So we're going to try to do this episode in a way that someone who has never heard of this condition, or our organization, or us can learn and be just as engaged and sucked in as somebody who might have a personal connection already. So we'll just try to keep each other in check throughout this and plug in some information as we go.
So how do we start? How do we start?
Bethany Weathersby:
Yeah. Okay. Well, let's start by telling people who we are, if they've never listened to the podcast before. I'm Bethany Weathersby, and I'm the founder and executive director of the Allo Hope Foundation. I found out in, what, 2013, I think, that I had something called anti-Kell antibodies. That was during my third pregnancy. And I now understand that that condition is called maternal alloimmunization and it happens when a mother develops antibodies after being exposed to a blood type that's different from her own. And this is a problem in pregnancy if a mother has these antibodies, because they can cross the placenta and attack her unborn baby's red blood cells. And if you don't have enough red blood cells, you become anemic. And so if this fetal anemia is not treated, then the baby can actually die. This disease, that the baby has from the mother's antibodies, is called hemolytic disease of the fetus and newborn, HDFN for short.
And when I found out that I had these antibodies, I did not know about the specialized treatment that my baby needed. I really didn't know anything about it at all. Who would, right?
Molly Sherwood:
I know.
Bethany Weathersby:
Yeah. I never even heard of it.
So these babies need intrauterine blood transfusions when they become anemic. We also say IUT for short for the transfusion. And this involves giving the baby blood through a tiny needle. The needle is long, but also narrow, tiny.
Molly Sherwood:
Teeny-tiny.
Bethany Weathersby:
So that goes into the uterus, and then into the baby's umbilical vein, and delivers fresh blood to the baby to replace that blood that has been destroyed by the mother's antibodies. And those babies need very close monitoring and really specialized fetal care. And in the process of my first alloimmunized pregnancy, my daughter, Lucy, died at 19 and a half weeks' gestation. And after that, I started a blog and just sharing information about our journey to try to have more kids and also just some basics about the disease. And I realized that this is a much bigger issue than just my personal story. And this patient population desperately needs resources, and support, and better medical care, honestly. And hope. Most importantly, hope.
Molly Sherwood:
Yes.
Bethany Weathersby:
And so I started the Allo Hope Foundation in 2019.
Molly Sherwood:
And I'm Molly. I found Bethany when I was navigating my own two alloimmunized pregnancies, and I fell in love with this work so much that I just transitioned away from what I was doing in research, and I do just this now. I help support the foundation's research and advocacy efforts. And I'm a lucky story, my antibody levels stayed low and my babies did not need any specialized treatment. And when you find out you have this condition, there's really no way of knowing how severe it will be. The only thing you can do is try to prepare and find the best care to ensure your baby survives. And that's where this story starts.
Bethany Weathersby:
This story is truly incredible. Everyone that we have shared this story with has been deeply moved, and I can't wait to share it here on the podcast with everybody. This is a story of hope, and inspiration, and a mother's love, honestly.
Molly Sherwood:
And the incredible way that humanity can come together to do amazing things that you could never ever imagine.
Bethany Weathersby:
It really is about the goodness of humanity. So without further ado, here we go. Let's introduce the star of the show, Rose. Rose, welcome. And tell us your full name and where you're from.
Rose Murage:
Hello, Bethany. Hi, Molly. My name is Rose Wangu Murage. I'm from Kenya, Nairobi, that's the capital city of Kenya.
Bethany Weathersby:
After you got married to Bruce, did you guys discuss having kids and what size family you wanted in the future?
Rose Murage:
Bruce, one day went like, "I wish there was some little girl just walking around", and I knew that was it.
Bethany Weathersby:
Oh my gosh. That is so sweet.
Rose Murage:
Yeah. And then we planned on getting pregnant. And in 2019, I got pregnant, give birth on July 8th.
Bethany Weathersby:
So in Kenya, seeing an OB during your pregnancy is a privilege?
Rose Murage:
If you happen to go to a public hospitals, which most people go to, that's like a privilege.
Molly Sherwood:
And public is the most affordable option?
Rose Murage:
Exactly, the most affordable that people back at home get to go to.
Molly Sherwood:
So you didn't have really doctor's appointments with your first pregnancy?
Rose Murage:
No.
Bethany Weathersby:
Wow. And you are Rh-negative?
Rose Murage:
I am.
Molly Sherwood:
So if you have a negative blood type, there is one way that the disease we're talking about, alloimmunization, can be prevented. And it is by receiving an injection during your pregnancy, and right after birth, called Rh immune globulin. Some people call it by a common trade name, RhoGAM, but that's not the only trade name. And that can help prevent you from developing anti-D antibodies, which could happen if you have a negative blood type and your baby has a positive blood type. So in America, that is the standard of care, is that you get RhoGAM, or RH immune globulin, in the middle of your pregnancy, and during any pregnancy bleeding, and then after birth.
Bethany Weathersby:
And that's just basic prenatal care here. So did you get that during your pregnancy, Rose?
Rose Murage:
Well, the good thing about that is, I always knew I was Rh-negative.
Molly Sherwood:
How did you know that?
Rose Murage:
Well, we used to donate blood in high school.
Bethany Weathersby:
Oh, that's awesome.
Rose Murage:
And I was interested because there was just a few of us who were Rh-negative. I was interested and I wanted to find out why we were special, and that's how I found out I was Rh-negative. And I read more about that and I read about the anti-D injection. Yeah. So when I got pregnant, I knew I had to get it.
Bethany Weathersby:
That's great. You already had that education.
Molly Sherwood:
So did you get it then?
Rose Murage:
I did get it at 28 weeks.
Molly Sherwood:
At 28 weeks, which is when you're supposed to get it.
Rose Murage:
Yes.
Molly Sherwood:
And then did you get it after she was born?
Rose Murage:
Yes, I did.
Molly Sherwood:
Interesting.
Bethany Weathersby:
So there's no issues during the pregnancy?
Rose Murage:
Well, I bled at six months pregnant.
Bethany Weathersby:
Oh.
Rose Murage:
And I remember I was so anxious because I read that you should get the anti-D injection once you bleed, or at any time during pregnancy you happen to bleed. I asked the doctors if I could get it and they said no. The reason why they said no was, they said I wasn't 28 weeks yet. Because at that time, I remember I was around 25 weeks. But then we just went to and fro, and I didn't get it. Yeah.
Bethany Weathersby:
And yet, you were already advocating. You were trying your best.
Molly Sherwood:
So looking back, that might be when you developed your antibodies, because the antibodies can be developed when there's blood mixing between the mom and the baby.
Bethany Weathersby:
Yes.
Molly Sherwood:
And it sounds like that happened when you had that bleed. And getting the injection at that time would be important to prevent developing antibodies.
Rose Murage:
I don't think there's anything that can convince me otherwise, because I really feel like that was my sensitizing event. Yeah.
I delivered Alexis... Her name was Alexis Imani Ocheno. Fancy, right?
Bethany Weathersby:
Yeah, it is.
Molly Sherwood:
I love it. I love it.
Rose Murage:
I love it too.
Molly Sherwood:
What does Imani mean?
Rose Murage:
Yeah. Imani means faith.
Bethany Weathersby:
I love it.
Rose Murage:
I delivered Alexis Imani at 39 weeks, and somehow I feel like I blame myself for whatever happened, because I kept on going to this hospital and go to the other one simply because I couldn't get the care that I felt I needed. So somehow I blame myself, and sometimes just blame the hospitals, and all that. But yeah, so I delivered her 39 weeks. At that time I went to the hospital, well, Chris and I, he spent the whole night there.
Bethany Weathersby:
Oh.
Molly Sherwood:
Oh.
Rose Murage:
Well, not inside, but outside in the cold.
Bethany Weathersby:
Would they let him come in with you?
Rose Murage:
No. No.
Bethany Weathersby:
Wow.
Molly Sherwood:
Oh.
Rose Murage:
They don't let you in the labor ward or anywhere close to that.
Bethany Weathersby:
Wow.
Rose Murage:
So he was outside in the cold all that time. And I delivered her at 3:00 AM and she didn't cry. And I remember, I think I was a bit tired, because my vision was blurry. And I woke up with some oxygen on and some IV. And I didn't understand what was happening. So she didn't cry. They took her to the NBU, newborn unit, and said she was fine. But then I noticed that she looked so pale. I'm going to use, white because that's what they say.
Molly Sherwood:
Yeah, do it.
Rose Murage:
She looked so white. She looked so white that the doctors were joking around asking me if the father was white-
Bethany Weathersby:
Which he is not, right?
Rose Murage:
... which he's not.
Bethany Weathersby:
Right.
Rose Murage:
Which he is not. But that was concerning to me. While Bruce is a little bit light, but then that was extreme, so it was a bit worrisome to me. I remember I tried feeding her, but she was so weak she couldn't feed. Her cry was just so weak too. Well, I thought everything was fine, and I thought that's how a baby is supposed to be, because that was my first pregnancy. That was my first baby. So I thought that's how it's supposed to be.
And we got prepared to getting discharged the next day. And when we were standing in line to get checked and get the BCG, that's the TB vaccine, so we were sitting in line. And when the doctor saw Alexis, I remember him saying he didn't think we were going to go home that day. And then my heart just dropped, because all that time I felt like something was wrong. It's just that nobody had confirmed it. So he went like, "Mama Alexis..." That's why we call mom's back at home. Yeah. "Mama Alexis, I don't think you're going to go home today." So Alexis's stomach was huge.
Bethany Weathersby:
Really?
Rose Murage:
Yeah. And all that time I didn't notice that, because she was all wrapped up in shawls, and all that.
Bethany Weathersby:
Wow. I wonder if that was fluid buildup, like ascites or fetal hydrops from severe anemia.
Rose Murage:
We went back to the ward and she got sent back to the newborn unit.
Molly Sherwood:
What was life like going back into that newborn unit? What was it like in there?
Rose Murage:
Well, it was bad because the situation back at the hospitals at home is not that good. You have to share beds. Sometimes you have to sleep on the floor.
Bethany Weathersby:
Wow.
Rose Murage:
Yeah. So wasn't so nice being told that you're going to get back in there, and then you're going to have a baby in the newborn unit. Of course, you want to hold your baby. And one night I woke up to go see her because, of course, you want to go see your baby every now and then. And I found the IV bag dripping on her.
Molly Sherwood:
Oh.
Bethany Weathersby:
Oh, no.
Rose Murage:
The whole head was wet.
Bethany Weathersby:
Oh.
Rose Murage:
That was so heartbreaking, because this baby's sick and then she doesn't need that.
Bethany Weathersby:
No.
Rose Murage:
So that really... oh, I cried so much that day because I felt like, well, if I had some extra money, I would just go to a private hospital, which are quite expensive back at home.
Bethany Weathersby:
So you felt like that was a direct expression of how little care she was receiving, right, and attention from the...
Rose Murage:
Exactly. Yeah. Yeah. And at some times I would get mad, but I would do nothing because, well, that's what we could afford. So after five days, we got transferred to the main hospital, the main government hospital. Well, the main public hospital, that's what we call them back at home. And she was put on all those stuff, on oxygen. That was some breaking point for me because at the other hospital, she wasn't on anything like that. But then to go to the other hospital, and see her on oxygen, and all those things on her, it was just sad. But I was hopeful that she was going to get better.
Bethany Weathersby:
Did the doctors ever tell you what was wrong with her?
Rose Murage:
No.
Bethany Weathersby:
Nothing?
Rose Murage:
No. No.
Molly Sherwood:
Do you think they knew?
Rose Murage:
I really don't know, because I feel like they could have told me something on maybe day two or three, giving them the time to find out what was happening around that. The initial hospital, they actually did DCT test on her.
Molly Sherwood:
So direct Coombs test. So that would be a way of checking if you had developed antibodies, and if they had attached to her blood, which would tell you if she did have hemolytic disease of the fetus and newborn from your antibodies, if you had developed them.
Rose Murage:
Exactly. Well, they never shared it, but my hunch give me a 99% that it was positive.
We are now in the biggest hospital that we got transferred to. So she's on oxygen, she's on all those things hooked up on her. And I'm just there watching my baby slowly just lose weight, not eat, and all that. And on day five... because she spent 10 days with us... on day five, she got worse. I noticed her feet was cold. And I went to get the doctors and I was like, "Are the feet supposed to be this cold?" And then they rushed over and took her away. And I just stood there because I think the mother's... Should I call them instincts?
Bethany Weathersby:
Yeah.
Rose Murage:
Yeah. I just felt something was terribly wrong. The way they just came over and took her so fast, I knew something was wrong, terribly wrong. So they took a while and then they brought me over to her. And at that point they were actually... I wish they didn't come for me.
Bethany Weathersby:
Did you saw it all?
Rose Murage:
Yeah. So I wish I didn't see that, because I'm going to have to live with that all my life. So they were actually doing some resuscitation on her, and I went like, "Oh, that was so fast. How did she get there?"
Bethany Weathersby:
Wow. So they're doing CPR, and you're standing right there?
Rose Murage:
Yeah. And I'm standing right there. And I'm like, "How did we get here?" So I think they did all they could, because she started bleeding from the mouth and the nose, and that was really horrible.
Bethany Weathersby:
That sounds so traumatizing, Rose.
Rose Murage:
Yeah. So that's how we lost Alexis. While the five days that we spent there, the main hospital, she fought so hard.
Bethany Weathersby:
And you did too, Rose.
Rose Murage:
She fought so hard.
Molly Sherwood:
I've always been amazed at you from the beginning that I've never seen a mother's intuition be so strong as what I've seen in you. You knew so much of this and of her story without any information, without any support from anyone else. You knew so many things in your heart.
Bethany Weathersby:
And you were fighting for her before she was born. You were trying to get the RhoGAM shot. You were doing your very best to protect her, and you're such a good mother.
Rose Murage:
That's how we lost Alexis.
Bethany Weathersby:
Okay. Wow, man. And so did Bruce ever get to see her?
Rose Murage:
Yes. He could come and visit while we were in the ward. Yeah.
Bethany Weathersby:
Okay, good.
So after she died, did they tell you what had happened? What did they say about future pregnancy? Did the physicians and-
Rose Murage:
Well, when we lost her, they just wanted to talk to me. And I don't know what happened, because they never did.
Bethany Weathersby:
Oh, really? Wow.
Molly Sherwood:
So by this time, we still don't know. You had a suspicion from the beginning, I think.
Rose Murage:
Yeah, I did. The fact that I missed the shot, the anti-D injection, it just gave me a hunch that it was something to do with that. Yeah.
Bethany Weathersby:
And you were right, it turns out.
Molly Sherwood:
But the way you had to fight to even figure out, and we're not even there, we're not even at that part in the story. So how did you decide that you felt ready to try again?
Rose Murage:
We wanted to see an OB-GYN, and we did see one. We actually did see one. And he went ahead and say that it would be fine if we tried again. And I asked him, "Do we need to get some drugs or anything like that?" And he just went, "No, you don't need anything. You just get pregnant. And that's it." We planned on our next pregnancy. I give birth to my second baby 2022. Yeah. This time we started... We call them clinics back at home, antenatal clinics.
Bethany Weathersby:
Antenatal clinics. So you were having medical care this time that you didn't with Alexis and you're going...
Rose Murage:
Yes.
Bethany Weathersby:
So they're trying to watch baby closely?
Rose Murage:
Yeah. I think I started them... Was it four weeks? I got the ICT test on me and everything was fine.
Bethany Weathersby:
Right. So the ICT is the indirect Coombs test, and that is when they test the mother to see if she has red cell antibodies that could possibly attack the fetus. And so we also call that an antibody screen. So yours was negative, which tells you that you do not have these red cell antibodies.
Rose Murage:
Exactly. So that's the reason why I was a 100% hopeful.
Bethany Weathersby:
Yeah. Sure. So then you just thought what happened to Alexis must've been something else and HDFN?
Rose Murage:
Exactly. Exactly. Pregnancy was smooth. No bleeding, no nothing, no throwing up.
Bethany Weathersby:
Oh, wow. Wow.
Molly Sherwood:
Ooh.
Rose Murage:
Yeah. It was-
Molly Sherwood:
It's the little blessings.
Bethany Weathersby:
Jealous.
Rose Murage:
Jealous much.
Molly Sherwood:
Saw a blessing there. Yeah. Bethany and I are jealous.
Rose Murage:
Well, yeah, my pregnancies just are the smoothest all the way to 38 weeks where I started having contractions. And that was it.
Bethany Weathersby:
So that's full term, pretty much. Yeah.
Rose Murage:
Yes, yes. He was ready to pop out. And at exactly 38 weeks, I gave birth to baby Max.
Bethany Weathersby:
What's his full name?
Rose Murage:
Maxwell Riziki Ocheno. And the sad thing is, he didn't cry. Yeah, he didn't cry. And I thought to myself... I actually asked myself if things were just repeating themselves. So he comes out, doesn't cry. He's looking pale, but quite yellow. Yeah, you could not ease that. He was really not even quite yellow. He was super yellow. So he's taken to the newborn unit, and they tried to work on him, and all that. And all this time, I'm just lying there in a pool of blood because I think I had a bad tear.
Bethany Weathersby:
Yes. Oh.
Rose Murage:
I had a bad one. I had a bad one that I got stitched up three times.
Bethany Weathersby:
Oh my gosh.
Molly Sherwood:
Terrible.
Rose Murage:
But then I was bleeding too much even after being stitched up, and they brought me back, and the other stitches open. They tried to get more clots out and they stitched me back again. And then I just continued bleeding. And all this time, I'm just worried about my baby because he's looking so yellow?
Molly Sherwood:
About baby.
Bethany Weathersby:
Right.
Rose Murage:
And then they call in Bruce. And I remember he came in and I was shaking.
Bethany Weathersby:
Oh.
Rose Murage:
I was really shaking. I feel like that was his most terrifying moment because the baby's not doing good. The mom is here just bleeding and shaking.
Bethany Weathersby:
Oh.
Molly Sherwood:
Oh. [inaudible 00:18:59].
Rose Murage:
I go to check up on the baby and he's just lying there so yellow, not opening his eyes. You know how babies just try to be active, but he wasn't. So after a while, they gave him to me, and I was in a bed, and I tried feeding him. But then he was so lethargic, he didn't open his mouth, or open his eyes, or... He was just there. I remember just asking the nurses there because I felt something was wrong. I felt like everything was just repeating itself.
Bethany Weathersby:
Yeah. Of course. Yeah. It sounds like it was.
Rose Murage:
And I wanted to get it before it got to that place that it got Alexis. So I remember asking the nurses there, and they just didn't care. I started crying, because I have a sick baby here, but you're just minding your own business. You should mind the baby. That's your job. So after 12 hours, the doctor comes in, and talks to me, and goes like, "I think this baby is going to need to go to the biggest hospital, because I don't think we can take care of him here." But all that time, my ICT was negative. So I thought-
Molly Sherwood:
So you don't think you don't have this disease? Yeah.
Rose Murage:
We were told to call in an ambulance, because you have to call your own ambulance.
Bethany Weathersby:
Oh. So you and Bruce had to... Oh my goodness.
Rose Murage:
Bethany and Molly, who just sits down and plans for, "I'm going to need an ambulance?"
Molly Sherwood:
I need money to pay for this ambulance, yeah. You can't.
Bethany Weathersby:
Right.
Rose Murage:
You don't sit down and plan for that.
Bethany Weathersby:
No.
Rose Murage:
Yeah. Because you wish is to go to the hospital, get your baby, and get discharged.
Bethany Weathersby:
Right.
Rose Murage:
So we started looking for money that we didn't have by then, and calling an ambulance, and we're taken to the big hospital. Well, the reason why we initially didn't go to the big hospital is because it doesn't have such a nice name.
Molly Sherwood:
Not a good reputation, yeah.
Rose Murage:
And sometimes you have to look for a private hospital which you can afford and go there. Since they couldn't take care of Max, and what was happening to him, they sent us to the big hospital. And we get the ambulance, and we [inaudible 00:21:04] there. And they take Max in. He was actually taken to the NICU and I was taken to the ward, because I was still bleeding all that time.
Once we got out of the ambulance, they took the baby and I was taken to the ward. So the nurse just saw me walking to the washroom and blood was just all over the place, and went like, "Hey, you there, we need to check you out." And then I was taken to some bed and, oh, the stitches opened them again. I think I went like, "Oh, is this the part where I die?", because it was really painful. Same place three times, it was really painful. Well, they gave me some medicine to numb the area, and I still felt so much pain. I remember just saying to myself, "I'd rather just have this pain and not have the pain of losing my baby again." Because remember now that I can't see my baby. I'm in a different place and he's in a different place. So they open up my stitches, and get more clots out, and they stitch me back again.
So I couldn't use a wheelchair. I couldn't even use a wheelchair, yeah. So I walked over to see the baby, to the NICU. I couldn't figure out where he was because once I walked in, there were two babies in one bed. So I was like, "Where's my baby?" So I found him in a bed where he was sharing with another baby, but he was under lights. But there, I think it was just... What do you call the six lights?
Molly Sherwood:
Just the overhead [inaudible 00:22:37] lights.
Rose Murage:
Yeah. Yeah.
Molly Sherwood:
And I was going to comment on, because you've been explaining how the baby's colors really have told you a lot, like how Alexis was pale, and that could be a good indicator that she's very anemic. And how Max was yellow, which can mean that Max has really high bilirubin. And that happens in babies who have HDFN, because if there's a bunch of broken down red blood cells in that baby, because the mom's antibody broke down the red blood cells, then the baby has to process that. And when they process all those dead cells, they produce bilirubin. And that's what makes babies turn yellow. And a treatment for that is to give them light therapy, phototherapy. So that's why you're saying Max was under one overhead light. But of course, nobody knows, and certainly you don't know that he has this disease right now.
So in America, ideally, a baby who's that yellow and who has this disease would be under tons of lights on the top, on the side, and underneath right after they're born.
Rose Murage:
But then he was only under one light, and he was sharing that with another baby, which basically means he wasn't even getting enough.
Molly Sherwood:
Yeah, it probably wasn't directly over him. Yeah.
Rose Murage:
I think we asked what was going on, and they simply just asked me if I did get my injection, my anti-D injection. That was it. That was the answer I got.
Bethany Weathersby:
And what did you say?
Rose Murage:
I said, "Yes. Well, I did get it." So, so far, I've gotten three. Up to that point, I had gotten three injections.
Molly Sherwood:
But if you already had the antibodies before the injections, it doesn't matter. And the injections don't help.
Rose Murage:
Exactly. Oh, I just keep thinking about how I saw him in that bed. So at this point, he's super yellow, more yellow than he was when I saw him before. So that was the first day. The second day, the doctor calls me and he's like, "I think we're going to have to treat baby, and we're going to have to do something that's called exchange transfusion." And by that time, I didn't have time to Google, or do some research, or anything like that. So I was like, "Oh." He was like, "This is how we do it. We draw blood from him and then we gave him some fresh blood to replace that." And I thought, "Well, I got it." But then there was no blood available to do that. So I had to reach out to my family and friends to come donate for him to get the exchange transfusion.
I met a good doctor that I remember up today that was so supportive and was really patient with me. And I remember him saying that they needed fresh blood. So I'm all over my phone just trying to get someone to donate.
Molly Sherwood:
While you're healing and you're also trying to feed him?
Rose Murage:
Oh, yes. That's when I got to join some group on WhatsApp. I found this foundation that's made of rhesus-negative people, both men and women, whose main aim is to donate to fellow rhesus-negative people.
Bethany Weathersby:
And that's people in Kenya?
Rose Murage:
Yeah. Just strictly negative people.
Molly Sherwood:
I feel like I need to point out that in America, we never think about this. I don't have to find a person to physically show up and give blood, so that I can have blood. We just have blood available. We have blood. You just go to the hospital and they give you blood. But you have to join a group of people who had to come together on their own to solve this problem. Just at a personal level, who are willing to donate for something like this.
Rose Murage:
Well, I'd like to shout out that foundation, O Negative Foundation-Kenya. It's super nice. They just really fast... Yeah. But then in my case, sad to say, things got worse before... When they donate, the blood has to go through some cleansing. So by that time, baby Max was bad.
Bethany Weathersby:
How were you doing?
Rose Murage:
Well, I'm a mess because I'm like, "Oh, isn't this what happened last time?" And I'm also trying to get some milk for him.
Molly Sherwood:
Yeah. Can you imagine? There's no way I'd be able to produce milk in that situation. No way.
Bethany Weathersby:
Yes. That's so stressful.
Rose Murage:
I think it was that night I went to the ward and, well, took a shower. And given the fact that I was sleeping on the floor-
Bethany Weathersby:
Tell us why you were sleeping on the floor, Rose. So this is two days after giving birth and having all of that stitching and un-stitching. And where were you sleeping on the floor?
Rose Murage:
Well, because the beds there are just full of people, like two moms sharing one bed. And then if you don't find any space, you have to sleep on the floor. Let me say I never slept, because I'm just there watching over my baby. Yeah. I don't think anybody just slept because you have babies there that need to be taken care of. And of course, those babies are sick and there's no way you'd find sleep when your baby's sick.
So I took a shower and then went to the breastfeeding-
Molly Sherwood:
Like a lactation room?
Rose Murage:
Exactly. I went to the lactation room and tried to get some milk for Max.
Molly Sherwood:
But you don't have a pump, so you're just hand expressing?
Rose Murage:
No. And let me tell you, Molly, I was super desperate to get some milk for him, because we are going to day two and he hasn't had anything. So I go into the lactation room and guess what? I get a whole 30 mL.
Molly Sherwood:
30 mL?
Rose Murage:
Yeah.
Molly Sherwood:
That's amazing.
Rose Murage:
Yeah. It's like-
Molly Sherwood:
It probably felt like the one thing that you did have control over, "I'm going to do this for my baby, if I can't do anything else."
Rose Murage:
Oh, yeah. Yeah.
And I remember walking out of that room very happy that my baby was going to feed on that. I was excited that I had it. It was just a matter of feeding him. I go in the NICU and I'm holding my milk, clean my hands. And from afar, I see my baby. And here we go, a mother's instincts. From afar, I could see that he wasn't breathing right. I just watched him from afar and I was like, "Oh." Because again, I feel like every time I walked in there, I would just be like, "Oh my gosh, are they breathing? Am I going to find him breathing? Am I going to find him..." Those thoughts?
Molly Sherwood:
Sure. Yeah.
Bethany Weathersby:
Is he unaccompanied by caretakers? Are there people around or is he just...
Molly Sherwood:
Yeah, is anyone around?
Bethany Weathersby:
I feel like no one's ever around him.
Rose Murage:
Around him?
Bethany Weathersby:
Yeah.
Rose Murage:
No.
Bethany Weathersby:
Okay. Or in the room taking care of him and the other babies?
Rose Murage:
Well, in the room, they're like close to 10 babies, if not eight babies. Well, not less than eight babies in the room. So if the nurse is not with this baby, she's with that baby in the same room.
But at that time, when you go feed the baby, the nurses are just sitting far from you. So I watch him from afar and I noticed that he's not breathing how he's supposed to breathe. And I just got really scared and dropped my milk down-
Molly Sherwood:
On the floor.
Rose Murage:
... because I was like, "Oh, am I confirming my fears right now?" Yeah. So my 30 mL just goes down to the floor. And I remember I went to grab that favorite doctor we had. So I grabbed him and brought him over. And I didn't walk all the way to Max, because I didn't want to confirm anything. So I just brought in the doctor and pointed to Max. I was like... I couldn't even speak.
Bethany Weathersby:
Oh my gosh. Wow. Terror. Yeah.
Rose Murage:
I just pointed him to my baby. So he went there and I just stood there some few meters away. And then I watched him... Oh, I'm shaking right now. Those are the worst pictures of my life, yeah. And so bad that you can't do anything about it. You can't just get your hand in your head and grab those memories and just throw them away. They'll just be with you as long as you live.
So he calls a nurse for some extra hand, and then they bring some machine. And they start working on him. And then I'm like, "Oh, not again." Do you know that I even crossed my fingers?
Bethany Weathersby:
Oh my gosh, Rose.
Rose Murage:
I crossed my fingers and I was hoping that... Oh my gosh. I was like, "Why me? This is the second baby."
Bethany Weathersby:
Yeah. It's not fair. It's not right.
Rose Murage:
And the fact that everything just repeated itself step by step-
Bethany Weathersby:
Those are your worst fears coming true again.
Rose Murage:
They worked on him, and then that doctor just comes to me and says, "I'm sorry", just like that. I wondered why it all happened so fast. One moment, the doctors are just surrounding your baby, and then the next second they just say sorry.
Bethany Weathersby:
Oh, that must've been so devastating, like living in a nightmare.
Rose Murage:
Yeah. So it happened for the second time with my full term baby, a baby we thought was the restoration. And it's not that we weren't ready for Alexis, but we planned so much for Max.
So that favorite doctor I had there comes to me, and grabs my back, and goes like, "I'm really sorry, Mama Max." I'm like, "No." And then I start shouting all over and screaming, because there's no way. And then he asked me if I want to call my husband, Bruce. So how do I call Cruz and just tell him it happened again?
Bethany Weathersby:
Oh my gosh.
Rose Murage:
Because I remember him asking the heavens to just let us have that one. And he was like, "Oh, I wish the heavens just lets us keep this one." So how do I call him and tell him, "I guess, we are not going to keep this one." And you don't have any choice. The worst thing, or rather what I regret the most is not taking pictures of Max, because I was going to take pictures of him. So that's how we lose baby number two.
Bethany Weathersby:
Okay. So two babies, and it's like replay. I mean, they almost went through the same steps and died in very similar ways. And yet, you have a negative antibody test. You must've been so confused and lost.
Rose Murage:
I was, because nobody explained to me what was happening. What the doctor in there just asked me was, if I got the anti-D injection, that was it. No more, no less. And then the reason why I thought everything was just repeating itself is because Max was also bleeding from the mouth and the nose. Yeah. I don't know. I'm yet to find out why, exactly why. But it happened to Max too.
So after all that, I took some courage and called Bruce. I actually called a friend and I asked them to go get Bruce, because I couldn't bring myself to just call him. So I called him and I was like, "Can you go get Bruce?" It was like 4:00 AM. It was like, "Can you go get Bruce and bring him to the hospital?" And by that, I thought he wouldn't just know what was happening, because there was no way I would just call him to just come to the hospital at that time just like that. So yeah, he came to the hospital and I didn't want to see Max after he died. I didn't want to see him, because I didn't want those images to be stuck in my mind. So Bruce went in to see him, and then I was just standing outside there. But then again, I was like, "Oh, that's my baby. I should see him." So I followed him and saw my baby, and he was so swollen. Yeah. He was so swollen.
Bethany Weathersby:
Would that have been hydrops as well, or enlarged spleen? Wow. Yeah. Okay, which would indicate untreated fetal anemia.
Rose Murage:
And we went back home without a baby. We got so afraid of getting pregnant again, because the second time was like a confirmation. I wanted to find out what was really happening and I also wanted to find a doctor who could explain to me, vividly just explain to me what was happening. So we discussed with Bruce about finding a doctor, a good one, because not all OBYGN know about this.
Molly Sherwood:
It's interesting though, because this disease is not as rare in Sub-Saharan Africa as it is in America, because we have easier access to, you call it the anti-D injection. But... So it's interesting that even so the OBs where you are, don't necessarily know how to care for a pregnancy with this condition.
Rose Murage:
Yeah. Because the one we saw or rather talked to before getting pregnant with Max was, in quotes, a good one.
Bethany Weathersby:
But there were also tests that were showing that you did not have antibodies, so that probably made everything harder, more confusing.
Molly Sherwood:
It's crazy how much that affected this, just a simple blood test problem could create a ripple effect like this.
Bethany Weathersby:
Yeah. Right. Yes.
And after you had Max, I think I remember you had another one of those that confirmed that you are antibody-negative.
Rose Murage:
Yeah.
Molly Sherwood:
And you also never had the luxury of taking time off work, going to therapy. That's not an option for you when you're going through this.
Rose Murage:
Since no doctor just gave me... No one told me what I wanted to hear. I decided to take my mourning on a bit different direction, and research. I felt like that's how I would just bring justice to my babies. And I went to Google, I went to Facebook, I went to Instagram, I went just everywhere. And I came across AHF foundation, and I was just reading posts posted by other moms, and I think you guys-
Bethany Weathersby:
In our support group?
Molly Sherwood:
Yeah.
Rose Murage:
... which, by then, I didn't know you.
Molly Sherwood:
How crazy? And now we're sitting on my bedroom floor. I just can't-
Rose Murage:
I think I went to the website and just read everything from the homepage to the end.
Bethany Weathersby:
Wow.
Rose Murage:
Yes. And I then wanted someone to talk to me. I didn't want to just read, and then that's it. I wanted someone to talk to me. And the fact that there were so many experiences in the AHF Facebook group, I had to find at least one mom or just one person to talk to me. And that's when I inboxed you.
Bethany Weathersby:
Yes. Yeah, Rose messaged me.
Molly Sherwood:
Oh. So you found each other.
Rose Murage:
Yeah.
Bethany Weathersby:
I have one of your very first messages to me. I wrote it down, so let me read it. It's very short.
Rose Murage:
Oh, sure.
Bethany Weathersby:
You private messaged me and you said, "Have you ever lost a baby? I just need to talk." And you were just immediately so vulnerable and willing to ask the hard questions. And I immediately felt kind of safe in opening up with you. And I felt like we had a really good connection right away. So then I told you all about my experience, and I think there were some similarities.
So then what did you do next?
Rose Murage:
At some point-
Bethany Weathersby:
Oh, you started asking a million questions.
Rose Murage:
Exactly. I was going to say that-
Bethany Weathersby:
So many great questions.
Rose Murage:
I was going to say that at some point I felt like, "Oh, am I being too much?" And I remember I sent you this long post, and then delete it. Do you remember that?
Bethany Weathersby:
Oh, yes.
Rose Murage:
Yeah. Because I was like, "Oh, this is too much." And then I think because of the time difference, you wouldn't answer just...
Bethany Weathersby:
Yeah, we're like opposite ends of the world. And so she would be asleep when I was awake, and I was awake and she was asleep. And so there was a time delay in response.
Rose Murage:
Yeah. And then I'd be like, "Oh, she hasn't read that. Is it because I'm being too much?"
Molly Sherwood:
[inaudible 00:38:26] being too extra?
Bethany Weathersby:
Oh, I remember even asking you like, "Hey, what were those three messages you deleted?"
Rose Murage:
Yeah, you did. You did.
Molly Sherwood:
Oh.
Rose Murage:
You did. And I feel like when you asked me that, that was when I felt like this person is really going to help me. Because I needed someone to just have a conversation with, like I'll ask you this and you're going to answer me back. That's when I felt that. So we started talking, and I told you about how I lost my babies, and sent you pictures, and everything.
Bethany Weathersby:
Yeah. I was so confused, because I was like, "This sounds just like HDFN. I cannot understand her negative antibody tests." Can I play... So Rose and I started communicating on WhatsApp through voice message often, because we didn't have time to text or type everything out. And so let me see, I wanted to share... Okay. So this was just the very first voice message that I sent Rose.
It's Bethany. Okay. I'm trying out the voice message, hopefully it works. I'm a little sick, so my voice is a little weird. But I have a lot of questions, because I do think that you can have a healthy baby. I really do. And I want to help you have a healthy baby and a safe pregnancy anyway that I can. And I want to see if the foundation can help in any way. So I have a lot of questions.
What did you think when I said, "I think that you really can have a healthy baby?"
Rose Murage:
I was hopeful.
Bethany Weathersby:
You were?
Molly Sherwood:
Oh.
Rose Murage:
I was.
Bethany Weathersby:
Wow.
Rose Murage:
Because, well, I could read posts from other moms from the group, but I thought that was an American thing, like only moms in America who can afford to have healthy HDFN babies. Yeah. I never thought that that would happen to me. Yeah. There's no way.
Molly Sherwood:
I remember getting... I don't know if frustrated is the word, but I felt helpless when I would see you post in the group, asking questions. And many well-meaning women, who didn't know where you lived, would comment telling you, "Oh, you just need to go here and just have this test run, and then go see this doctor. And then everything will be fine. Don't worry, mama, it'll be okay." So much of that, and I just wanted to pull my hair out because I'm like, "Poor Rose is seeing this encouragement, it's just out of reach. It's like a carrot. It's like a dangling carrot." It was just a helpless feeling, watching that you seek that out, and I don't forget that.
Bethany Weathersby:
Yeah, that was hard. I think that also drove us to shift our thinking and our perspective and really start working on what can we do for this mother in her current situation? What can be done? The first thing though that Rose and I were really working hard on was, we've got to figure out if she really does have antibodies. Nothing can really move forward until we know for sure that this is HDFN. And so I asked her, "Can you try to go get another one of those indirect Coombs test, which is an antibody screen?" And so I feel like it still took a lot of work on your end, because you weren't preg... Wait, you were.
Rose Murage:
That's when I went like, "Oh, shoot, Bethany, I think I'm pregnant."
Bethany Weathersby:
Yeah, you did. You did.
Molly Sherwood:
So then you're like, "Great. Now the clock is ticking."
Bethany Weathersby:
To action. Right.
So Rose and I were trying to come up with a plan before she got pregnant again.
Molly Sherwood:
Oh, wow.
Rose Murage:
I remember that day when I found out I was pregnant, I was so in disbelief, in so much disbelief because we weren't planning for it. And when I went on to test, I cried so much, you guys. I was like, "No." Do you see how people just get so happy when they get pregnant? I was like, "No, I don't want it. I don't want it, because I'm going to lose it anyway, so why should I just be happy?" So I think it was on a weekend, and Bruce was sleeping that day. I woke up at 6:00 and tested. And when he woke up, I was like... Because he knew I was going to test that morning, and he woke up, and came up to me, and I was just lying down and weeping because it's either I had to, well, keep going, just keep the pregnancy, or I had to do something I've never done before. That was getting rid of the baby, which was really scary. So Bruce came to me and was like, "Oh, this is going to be a miracle baby."
Bethany Weathersby:
Oh.
Molly Sherwood:
Wow. Really? That morning?
Rose Murage:
Yeah.
Bethany Weathersby:
Wow.
Molly Sherwood:
Wow. Bruce. But you didn't want... Were you kind of frustrated that he was trying to put-
Rose Murage:
Oh, how are you this confident? And that's when we decided to walk down the journey with you, because I felt like you were playing a very big part by just advising me and telling me to go get that test, go do this, because that's what I wanted. Yeah.
Bethany Weathersby:
You had given your permission for me to share your information with MFMs that I trusted. And so they were giving their thoughts and input, and they were really urging she has to make sure that this really is HDFN and get the antibody screen.
Rose Murage:
I remember you would just sometimes write me a text and would go like, "Can I share your info...?" And I go, "Yes."
Molly Sherwood:
Yeah, stop asking me.
Bethany Weathersby:
Because of-
Rose Murage:
I wouldn't even complete just reading the whole text. I would-
Bethany Weathersby:
It was HIPPA. I just wanted to be so sure. And you're like, "I've told you before, just share anything, all of my information."
Rose Murage:
Exactly. That's how much I just needed answers. Yeah.
Bethany Weathersby:
Yes. And you went and stood in line for hours to try to get that antibody test again?
Rose Murage:
Yes. Well, since my ICT just kept on coming up negative, I needed to find out more. And I remember you asked me to get Max's specifically.
Bethany Weathersby:
Yes, and all of his medical records because maybe there was a clue in those records, autopsy report, something that would definitely point to HDFN.
Rose Murage:
I went to the hospital by 7:00 AM and I was just getting done by 4:00 PM. So they're just those long cues. So yeah, that day I went to the NICU where Max was, and it was really bad because I could just see... Well, I don't know how to say it, but I could just look around and just see where he was lying, where they were resuscitating him, and all that. So it was really bad. And then at some point I got to see a consultant, OBYGN. And... Oh, guys, this is some... Because that day I cried so much. It was raining. Do you remember when I was talking to you about how I cried that day, and it was a good thing it was raining because people just thought it was rain drops.
Molly Sherwood:
Oh.
Bethany Weathersby:
Yes, I remember.
Rose Murage:
Yeah. I cried so much, because I tried to get Max's DCT. And when I was talking to that doctor, that consultant, OBYGN, he went like, "You're overthinking." And I was like, "How do you expect me to react?" Or, rather, "Why would he say I was overthinking while I had lost two babies?" Because I went like, "I think I'm sensitized." And he was like, "You're overthinking." I felt like he could have told me to maybe seek some other opinion from somewhere else, but it was just like, "Why would you say that to me?" Yeah. I've lost two babies, so even if I'm overthinking, well, that's fine, as long as I get what I need to get."
But the good thing is, I got it. And it was so... Have you ever got something that's not good, but you're happy?
Bethany Weathersby:
Just a relief, yeah.
Molly Sherwood:
Yes.
Rose Murage:
Because it reminded made me so much just seeing Max's name there, and all that, and just confirming that was it, it reminded me of so many bad memories. But then I was happy because I was like, "Oh, you're going to find out what's been happening." So I went home very happy after a bad day that I had there, and I took a picture for you.
Bethany Weathersby:
Yeah. You sent it to me. And I remember weeping reading through it. There were a lot of clues in there that showed, oh, he had extremely high bilirubin, extremely high. He was anemic. And so then he was anemic, but not so anemic enough to end his life. And so then it was like, okay, so this was hyperbilirubinemia and kernicterus that was the main culprit here. And so all of these things really pointed to HDFN and also the fact that he did not receive timely treatment, or the right treatment, honestly.
Molly Sherwood:
And the disease gets more severe with subsequent pregnancies, and so we saw Max was sicker faster.
Bethany Weathersby:
Yeah. Right. Yes, than Alexis. And so all of these clues pointed to it. And then on a separate piece of paper, we finally saw the direct Coombs test, and that showed that he was positive, which meant there were maternal antibodies attached to his red blood cells and destroying them. And so that was like, "Okay, we know that he died from HDFN." And yet you also had your indirect Coombs test again, and it was negative.
Rose Murage:
Exactly.
Bethany Weathersby:
Right. So it was like then we knew something's not right here.
Molly Sherwood:
Yes. That was so frustrating. So you decided to send it to another lab out of the country.
Bethany Weathersby:
So during this time, so after we found out that Max did die from HDFN with that Coombs test positive, I reached out to our medical advisory board at the foundation, of course with Rose's permission, and just shared the basics of the story, and was asking them, "What are your opinions? Does this sound like HDFN, because the mother apparently does not have antibodies? How can this be?" And so Dr. Trevett and Dr. Moise were immediately very invested. And Dr. Trevett said, "Call me, let's chat about this because I really want to help." It was a very short email, but it has had such a huge impact on me and obviously Rose. And he said, "I know it feels kind of impossible, but someone has to do something. We cannot just stand by and let her lose another baby." I mean, he didn't say that, but that's what he was implying, which is how I felt too.
And so it was just really empowering to have an MFM backing that, you know what I mean? And willing to put his neck out there and just like, "Let's try something new." And so I called him and chatted. And it was so encouraging because he said, "You know what? If you can just get her over here, I would like to provide all of her care free of charge and care for her and her baby for the duration of the pregnancy. And let's make it work." There's a lot of steps in that process. It feels overwhelming-
Molly Sherwood:
Which we totally didn't realize at the time.
Bethany Weathersby:
No. No. Or-
Molly Sherwood:
We don't know anything about immigration or anything. Yeah.
Bethany Weathersby:
Yeah. And so he said, "The only stipulation is, you have to make sure that she really does have antibodies. I can't move forward on this plan until we see a positive antibody screen from her." So in all this time, the clock was ticking because she's pregnant. And the longer we wait to get all of this going, the more danger her baby is in. So I told Rose his plan, and how did you react?
Rose Murage:
What if they want my kidneys?
Bethany Weathersby:
What if they want my kidneys?
Rose Murage:
This is the... Well, [inaudible 00:47:48]-
Bethany Weathersby:
Okay. You... Okay. So I told you that, Rose. And then what did you think when I'm like, "Hey, do you want to just come to America and then this doctor will just give you free medical care?" How did you feel? And what did Bruce think about it?
Rose Murage:
And then you went like, "If it's okay with you..." What do you mean if it's...
Bethany Weathersby:
Yeah. I was like, "This is your choice, Rose. If you don't want to come, that's fine. You need to decide"
Rose Murage:
Well, let me tell you what I thought about that text, because I remember it was a text message from you, and I received it in the morning, nighttime back in Kenya. And I walked up to Bruce and was like, "Can you read this?"
Molly Sherwood:
Is this real?
Rose Murage:
Yeah. And we were like, "Oh." "But you just met her through Facebook. Is that for real?" And we would be like, "Oh, what if I go there and they just want to get my kidneys?"
Bethany Weathersby:
I mean, I'd probably think the same thing.
Rose Murage:
Because I don't know these people. It's just, "Well, she's in the US and I'm here. We've never seen each other"
Bethany Weathersby:
Yeah. Like, "What do they want out of this? What do they get out of this?"
Molly Sherwood:
Yeah.
Rose Murage:
We don't know each other that deep. And I was like, "Oh, but this means my baby's going to get saved." Like, "I'm going to be like those moms I see post on the Allo Hope Foundation group on Facebook. That means I'm going to have that experience."
Bethany Weathersby:
Yeah. Or, at least the possibility of that experience.
Rose Murage:
Exactly. I was just ready to just risk it all.
Molly Sherwood:
Yeah. You would do anything.
Bethany Weathersby:
Yeah, I know. It was amazing. You were all in immediately like, "Tell me what to do. I'll do it."
Rose Murage:
Yes.
So the thing was, my ICT just kept coming up negative. And I remember you talking about how Dr. Moise that the results needed to be positive for you guys to be sure that it wasn't anything else. And at some point, I remember we thought it was something different.
Bethany Weathersby:
Yeah, you were talking about some obscure liver, because I asked them, "Is there any other possibility of a baby dying in this way, and then the mother being negative for antibodies and possibly a positive Coombs test for the baby?" And so Dr. Moise thought, "Well, maybe it could fit this ultra-rare condition", and it had to do with the baby's liver. And it seemed even more-
Rose Murage:
Worse, yeah.
Molly Sherwood:
Yeah. Not treatable. Yeah.
Rose Murage:
yes.
Bethany Weathersby:
And I don't know much about that. I mean, we looked at it a little bit, but it was really devastating.
Rose Murage:
Yeah. I read a bit about it because I was scared and I was like, "No, I would prefer if what comes to work [inaudible 00:49:49]-
Molly Sherwood:
I'd prefer to have this other deadly disease.
Bethany Weathersby:
[inaudible 00:49:49].
Rose Murage:
If I had to choose... Well, not to scare other moms who might be dealing with that out there, but it was just too many times with the negative ICT.
Molly Sherwood:
Yeah. So how did you figure out how to get a different ICT, the antibody screen.
Rose Murage:
There's some tests like that, which has to be sent all the way to South Africa because that's where they have the machinery. You have to send it there and it takes about a week, I think, and then you get the results. And that's what I did. So I went to the lab and sat them down.
Bethany Weathersby:
Sat them down?
Rose Murage:
Yeah.
Bethany Weathersby:
That's right, okay. That's right.
Rose Murage:
Yeah. Sat them down and I'm like, "Okay, here's the thing. I've lost two babies. And as you can see, I'm pregnant right now, and I'm not going to lose this baby.:" Not after you told me that there was a plan about getting me here. So I explained to them that I needed to test for antibodies, and I needed the results to be true, accurate. So I tested for antibodies and I had to wait a whole week, which seemed like a whole year.
Bethany Weathersby:
And I think you and I both were like, "I've never prayed so hard in my life for a positive antibody screen", right?
Rose Murage:
Oh, yeah. Oh, yeah. Oh, yeah. No. When I went to test, they were like, "Do you want the results by email or some hard copy? I was like, "Oh, I'm going to come for them. I'm going to-
Molly Sherwood:
I'm going to come for them. I'll be at your door.
Rose Murage:
Yeah. I want to be sure.
Bethany Weathersby:
Yeah. Like, lay my eyes on the paper.
Rose Murage:
Exactly. Like touch the evidence. Well, they told me to go back on a specific day, and that's what I did. I went back on a specific day and that's what I did. And I didn't open it. I didn't open it right there. I got my results and went back home. And I was like, "Oh, I'm going to take this home, pour myself some water, and sit back, and just read whatever that is in here." Because I was sure that... Well, after the talk I gave them, I was sure that I was going to get some results. I think that day Bruce was in the house, and we went in, and opened it together. And I was like, "Oh." I was just opening it bits by bits.
Bethany Weathersby:
Oh my gosh.
Molly Sherwood:
Oh my God.
Rose Murage:
And my heart was just beating so fast. I was like, "Oh." And he would just go, "Just open it." And I would be, "What if it's this? What if it's..."
Molly Sherwood:
Yeah, I would be Bruce here. I'd be like, "Cha cha, I need to see this."
Rose Murage:
So I opened a bit and it showed anti-D positive.
Bethany Weathersby:
Oh my gosh.
Molly Sherwood:
There it is. There it is.
Rose Murage:
I was just like, "Oh my gosh. Thank you. Thank you."
Bethany Weathersby:
You knew it all along.
Molly Sherwood:
You did.
Rose Murage:
Yes. And then I went ahead and was like, 1:256.
Bethany Weathersby:
So your titer was 256, which is really high. We consider a titer of 16 is significant enough to cause anemia in utero, and that is what merits all the monitoring that these babies need, like weekly specialized ultrasounds called MCA scans and potentially needing intrauterine blood transfusions, which you had no access to.
Rose Murage:
Well, I'm happy that we found out that I have antibodies. But this, this isn't good.
Bethany Weathersby:
The titer?
Rose Murage:
Yeah.
Bethany Weathersby:
So you knew right away?
Rose Murage:
I knew, because I'm 11 weeks, so by the time I'm like 20 something, what's going to happen? We had a plan to get me over here. I needed someone to just at least have get me an MCA, or something like that. So that scared me, the fact that the titers was high, but then I was happy that I finally had positive ICT.
Bethany Weathersby:
Did you feel some relief knowing, "Okay, this is what happened to my babies?" Now I have an answer."
Rose Murage:
Oh, yes, I did. I did.
I was thinking a lot upon my other babies when I got that results because, well, at some point I went like, "Oh, if only I found out this before. Well, just at least Max." Not that I wasn't... Or, rather, I'm not thinking about Alexis, but that's when... I mean, up to date, I feel like that was my sensitizing event when I bled with Alexis. So I went like, "Well, at least with Max, if only I had these results?" So that was tough. But again, I was a bit relieved because I knew what happened before. So that cleared some doubts.
Bethany Weathersby:
So then you sent it to me, the results, and it was just a wave of relief. I wasn't surprised by the titer, just seeing how serious it was with Alexis and Max. And I was just so grateful. Honestly, part of me was a little bit glad that your titer was significant enough to show everyone, "Hey, this is a very serious diagnosis and a very serious case, and we need to take action right now." Then we started working towards, "Okay, let's get her over to the US, so Dr. Trevett can give her the correct treatment. And in the meantime, let's try to get you some prenatal care there in Kenya."
Molly, when do you remember coming into the... When did I start telling you about Rose? Was it after we had that positive-
Molly Sherwood:
No, it was before that because I wasn't talking to you that much directly, Rose. I was just talking to Bethany every day and we're talking about normal work stuff, which is like we're supporting women on the website or on our support group, but we're also writing this grant and just doing things that are less pressing. But they're just part of our daily work and things we have to do to sustain the foundation. And so I have more of those things on my mind. And meanwhile, you are like, "I'm worried about Rose. I'm worried about Rose." You're starting to realize that you feel led to do this, and we need to do this as an organization. But I wanted to sit back and watch you make your own decision first, because it was a lift for the organization to do this, and that's your choice. That's something you had to feel right about.
And so once you were talking about worrying about, you, Rose, worrying about is Rose going to be okay if we can't make this happen? And I just saw the daily worry on your face. And once we decided we have to do this, then this is all we talked about every day for months.
Bethany Weathersby:
It was... You're right. I'm glad you said that, because it was a big decision. Because I don't know if we've ever, before this, poured so much of ourselves and our resources into saving one baby, because there's so many to save. And we had to think, "Is this okay to use our resources like this?" And we have a lot of reasons why we felt like it was the best choice.
Molly Sherwood:
Yeah. We felt like this was a learning experience for us to figure out the infrastructure in Kenya, so we could start supporting more women like Rose. And we knew seeing how hard Rose worked and continues to work for her baby, we knew that she could also give a voice to other women if we could get her through this.
Bethany Weathersby:
And also, like I said before, with Dr. Trevett saying, "We have to do something", that I felt like it gave me the permission to just do everything possible to save this baby. And I loved that you felt that way too, Molly.
Molly Sherwood:
Yeah. Just there's been so many moments where we were just struck with the enormity of the way that things came together, the way that people who don't know each other at all, immigration attorneys, congressional offices, hospital systems, like... It was crazy. My neighbor was asking me about it. I mean-
Bethany Weathersby:
The doctors, and nurses, and-
Molly Sherwood:
And all for Rose. It was just a crazy international story of humanity's grace, and we just felt totally in awe of it.
Bethany Weathersby:
Okay. So Molly was all in. And then you started developing your own relationship with Rose? Yeah. So you were progressing and we were rushing. Yeah.
Molly Sherwood:
So we were trying to get the... Oh my gosh, let's talk about the visa. We need to talk about that. Let's start talking about this.
Bethany Weathersby:
Molly and I were working on it. Right. And of course, Rose was doing a ton of work on her end in Kenya.
Rose Murage:
Daily.
Bethany Weathersby:
I mean, just seriously, you are like Superwoman.
Rose Murage:
Oh, well, that's right, because I had to do it because we had to find out how the baby was doing. We had to make sure he was doing fine, the baby was doing fine. We had to get MC empty scans, at least try to get MC scans. And well, just basically just find out how the baby was doing. And that on its own was so hard.
Bethany Weathersby:
When you got that 256 titer, were you immediately really scared for this baby?
Rose Murage:
I was. I was.
Molly Sherwood:
I was getting scared too, because I was like, "What do we do if she gets her MCA scan at 16 weeks and the baby's already sick? What do we do"
Bethany Weathersby:
Right. Yeah.
Rose Murage:
Yes. Yeah.
Bethany Weathersby:
And my first sensitized pregnancy... I mean, she probably needed an IUT at 15 weeks maybe, because at 17, she was so sick and so anemic.
Rose Murage:
Yeah. I read that on the website, yeah.
Bethany Weathersby:
I mean, her hematocrit was six.
Molly Sherwood:
So you did most of the research to start with the process of the emergency medical visa?
Bethany Weathersby:
Yes. Because before we even started, I needed to make sure this was a thing that some people did. And it is, where you can get a temporary emergency medical visa to the US if there is medical care available here that's not available in your country, especially when a life depends on it. And so that was the case here. And so I felt like you met all the requirements, my research. And so we just dug in and started trying, and Rose trying to get medical care there while we were doing all this. But you were also starting to like, "Okay, I got to get a passport."
Rose Murage:
Yes.
Molly Sherwood:
Which that is not, in Kenya... Well, that's not like it is here. Here, you send in your money to submit for your passport and it arrives in eight to 12 weeks. You don't have to go, and bribe someone, and-
Bethany Weathersby:
But also, she did not have eight to 12 weeks.
Molly Sherwood:
No, and you didn't have that. I mean, I-
Bethany Weathersby:
I mean, it was like, "You got to get this now. And how do we do this?"
Rose Murage:
Like right now.
Bethany Weathersby:
Yes. Yeah.
And had you ever been out of the country before?
Rose Murage:
No.
Molly Sherwood:
Never on a plane?
Bethany Weathersby:
Had you ever been on an airplane?
Rose Murage:
No.
Bethany Weathersby:
Oh my gosh. You were taking on so much, Rose.
Rose Murage:
I know.
Bethany Weathersby:
So tell us, did you get your passport? How did that go?
Rose Murage:
I did. That was so tough.
Bethany Weathersby:
Did you feel like you were on an emotional rollercoaster, because I feel like-
Molly Sherwood:
We did. It's so-
Bethany Weathersby:
Yeah. Because it was like, "Here's all this hope. Oh, you can come to America." Then it was like, "Oh, no, you can't. Negative antibody screen." "Oh, it's positive." "Oh, no, you can't get your passport."
Rose Murage:
At first, I was really hopeful.
Molly Sherwood:
And this is where I think you were trying to put the pieces together to apply for the first visa. And it was also around this time where we found out that Dr. Trevett was just already overloaded with his own patients with this disease, and he cares so much about doing right by his patients and giving them the very best that he told you, "I actually don't know if I have the resources to treat her anymore."
Bethany Weathersby:
Yes. I remember that day, it was raining and I was driving to another city for something I can't remember. And he called me and said, "Right now I just have a very heavy caseload of women who are having repeat or serial IUTs." So he was doing all these transfusions and he said, "I'm maxed out." And we knew that your baby would probably need IUTs. And so it was like, he said, "I don't know if I can provide that care for her, I have to be honest with you." And so I thanked him, but he said, "I want to help in any other way that I can." And so I was devastated after that, and I still felt absolutely determined that this baby would get the right care. And I didn't know what to do then.
Molly Sherwood:
And this is not when... But I have a message from you. Is this the same time when you were in the car driving, and something that we haven't said out loud yet is that, for you, this story reminded you so much of what you went through with losing Lucy, that it felt to you like this could be redemption for Lucy's life. And you prayed for that and that's what you asked.
Bethany Weathersby:
Yeah, that's a big part of my story. And I know that everyone doesn't share my faith. And so I just want to acknowledge that this is just my personal faith, but it is such an important part of this story, and I don't think I can tell the story without it. But when Lucy died, I really felt like... I felt like God told me I will redeem this, which is crazy to be like, "Oh, I heard God talking to me." But I felt like it was almost inaudible, "I will redeem this." But after I found out that Dr. Trevett couldn't treat her, I just started weeping, and praying, and saying, "God, this is what redemption looks like to me. This baby in Kenya with no resources. I had access to all of these resources here and these incredible doctors, even though I had to go out of state. This baby did not. This is redemption to me that this baby deserves life like every baby, and this baby needs to survive. And that is what the redemption of my daughter's death would look like to me."
And then I thought, "What about Dr. Ken Moise? And he called me on the drive, and I was just very emotional like I am now. And it's scary to be like, "Hey, can you just treat this patient for free? Here's this crazy idea, this woman in Kenya..." And I was scared to ask-
Molly Sherwood:
And it's not just treating a baby for free. It's him, and the NICU, and the hospital, and the OR... Yeah. It's not just him, but-
Bethany Weathersby:
And also I'm saying, "Can I send her to you?" I'm in Alabama, he's in Texas, so it's not like I was bringing her over to come live with me. I'm going to take care of her, which I would've loved, but I was like, "Hey, can I be sending this woman to you in Texas in a really dire situation?" But I felt like I needed to ask and so I just put it out there and said, "Here's the situation. Dr. Trevett doesn't have the capacity, and I'm not sure what to do next." He said, "Send her to me. Send her, I'll take care of her. I'll do it all free of charge. I'll ask my buddies in the neonatal, anesthesiology, and the pediatrics. And I'll just ask all", because he knows everybody.
Molly Sherwood:
By the way, he would want us to specify he will not do this again.
Bethany Weathersby:
Yeah, he did say that. He did say, "This is a one-time thing.
Molly Sherwood:
One-time thing.
Bethany Weathersby:
Yeah. But he said, "If you can get her here, I'm going to take care of her and her baby." And that was just... Oh. Again, here we go up on the emotional rollercoaster, just like, "Okay. Well, we have hope."
Molly Sherwood:
Yeah. It's like, "Okay."
Bethany Weathersby:
Okay. So you did get your passport eventually.
Molly Sherwood:
Yeah. You got your passport. But we're making it sound easy. It wasn't. You're traveling there multiple days. Yeah.
Rose Murage:
We had to, well, bribe to get it, yeah.
Molly Sherwood:
Which is standard there. That's what you have to do.
Rose Murage:
Yeah. And it's expensive to do because you have to pay for the passport. And then on top of it, bribe. Well, let's say I wasn't able to bribe them, what would have happened?
Bethany Weathersby:
Yeah. So you expedited your passport.
Molly Sherwood:
Well, at the same time we were working on the visa, right, at the same time?
Bethany Weathersby:
Well, you couldn't apply for a visa until you had a passport. So we were doing research and getting all the information. I mean, that was the beginning of the application process for the visa was, get your passport, number one.
Rose Murage:
So yeah, after so many trips to get my passport and some, what do you say, sweat-
Molly Sherwood:
Blood, sweat and tears.
Rose Murage:
... blood, sweat and tears, I finally got it.
Molly Sherwood:
And then it was visa time. And it was mostly you... I feel like, Bethany, you and Rose mostly compiled that information.
Bethany Weathersby:
Well, pastor Jane... Can we bring her into this?
Rose Murage:
Yes.
Bethany Weathersby:
Tell us who Pastor Jane is really quick.
Rose Murage:
I call her my big sister. She's walked with... Well, in this whole journey, she's walked with us since 2019. That's when we met.
Molly Sherwood:
Wow.
Rose Murage:
So I actually had gone to some counseling after losing Alexis, and that's when we met, because there was a WhatsApp group that... We have WhatsApp groups that have moms who've lost babies, and you talk about all those things there, and all that. So there was a group that I aired my story out, and then it reached her. And then she called me and told me, "How about we meet up on Sunday at this church", and all that? And that's how I met. And we talked for hours, and hours, and hours. And she encouraged me so much. And then she got some people from church and came over to my house just to console us. It was so sweet. We needed that so much. So she just feels like my big sister and she's walked with us all this journey. And through getting my passport, she walked us through because she knows a little bit of what happens. Well, she travels a lot-
Bethany Weathersby:
And she's older and has a bit more authority in these situations.
Rose Murage:
Yeah. So she travels a lot and she knows everything, almost everything of what goes on in the passport department.
Bethany Weathersby:
So you've got your passport with Pastor Jane's help. We did the Visa application. We tried to expedite that too, so get it faster because the normal wait for a visa was too long. And we knew the baby could be starting to get anemic soon, and so it felt like this race to save the baby. And I think before then, you had gotten at least one regular ultrasound, right?
Rose Murage:
Yes.
Bethany Weathersby:
And everything looked healthy, one baby-
Rose Murage:
And for some reason I think I was paranoid because I-
Bethany Weathersby:
Well, we all were. Of course, you were.
Rose Murage:
Yeah. Because I was, "Is that supposed to be like that?"
Bethany Weathersby:
I think any ultrasound photo you had, I sent to Dr. Trevett and Dr. Moise, and they're like, "Yeah, it looks good."
Rose Murage:
Yeah. And it will feel so good just to hear you, Dr. Moise, or Dr. Trevett saying, "It looks good." And I'll be like, "Oh, whew."
Bethany Weathersby:
That is really hard to go through a high risk pregnancy after two lost children. I mean... Yeah.
Molly Sherwood:
You had your first Visa appointment and you went in there with what we thought was enough documentation and they needed a lot of documentation.
Bethany Weathersby:
Yes. And we worked really hard to get all the documents.
Molly Sherwood:
So many letters, information from the hospital. They wanted estimated costs of what her medical treatments would be, which is just, how do you estimate that also, especially when hospitals are doing it for free. But I think part of it is that what we were offering to do was unbelievable. That was hard for the Kenyan embassy to believe.
Bethany Weathersby:
Right. And Dr. Moise sent in documentation and the foundation did. I felt like you were really well-prepared going into that interview. So when you apply for a visa like this, you send in your application and then they tell you when your appointment is.
Molly Sherwood:
Yeah. And then you went in for your first sit-down meeting for your approval or denial. Do you remember that? And you remember-
Rose Murage:
Yeah. How can I forget?
Bethany Weathersby:
Oh my gosh. Tell us about that.
Molly Sherwood:
Okay. Tell us how it went.
Rose Murage:
Oh my gosh. I had so much confidence because, well, we had gone through the possible questions they would ask me and all that with you guys. But then when I got there, it was just like the atmosphere, it was just cold.
Bethany Weathersby:
Yes. So much riding on that.
Rose Murage:
Yeah. It was just so cold. And when I walked in at the counter, well, they asked me some questions, like those questions that we are talking about.
Molly Sherwood:
Yeah. So they asked you a bunch of questions about what you're going to be doing there, and you were super nervous.
Rose Murage:
But I did answer them. I answered every question they asked.
Molly Sherwood:
Well, I think the first time we just explained in the application, the fees are being waived, there are no bills or whatever. And that was not acceptable to them. They didn't like that, I think.
Rose Murage:
And they told me that I needed something, or rather just a letter by the hospital that showed the estimated bill. But then this was like, "They're going to do it for free." And that's how they denied me. And then I had to come back, and talk to you guys, and tell you what they said. And we were going to try a second time.
Molly Sherwood:
And then we got so many more documents, like anything they could imagine. How many papers did you have with you?
Rose Murage:
I have like 50 of them, or even more.
Molly Sherwood:
Yeah. So we were like, "Okay, this is really going to work this time." So you had to wait, it was like three weeks. Was it three weeks? Maybe even four weeks.
Rose Murage:
Well, we tried to expedite again, but you don't get to expedite twice.
Molly Sherwood:
Yeah. So then how long did you wait before the second visa interview?
Rose Murage:
I had to wake up in the middle of the night and just find slots of people who just canceled their interviews.
Molly Sherwood:
Wow.
Rose Murage:
Yeah.
Molly Sherwood:
So you did that to try to find an opening?
Rose Murage:
Yeah. I would just wake up at 1:00, and just go through, and just find-
Molly Sherwood:
If anyone canceled?
Rose Murage:
I was going to have the interview, I think it was... They had given me up to September, which made no sense.
Molly Sherwood:
Yeah. Oh, yeah. It was crazy. You would've been like 28 weeks, something like that.
Rose Murage:
No, I would have given birth.
Molly Sherwood:
Oh my gosh, you're right, Rose. Yeah. That was crazy.
Rose Murage:
I would have given birth. So they had given me up to September. And then I woke up to a slot that it was from all the way from September to March. I texted Bethany at that time, the moment I got that slot, and I was like, "Guess what? I just found that slot."
Bethany Weathersby:
I think I remember that. And then I remember once we knew that you got that appointment, we started driving the embassy crazy again, calling and sending emails, being like, "At this day and time you will be seeing Rose, the Rose. This is what's happening." And then when you went in, they all knew you.
Rose Murage:
Yes.
Bethany Weathersby:
They're probably so glad you got that appointment moved up, because they were so tired of hearing about getting-
Rose Murage:
Oh, yeah. I was so... I was 98% sure I was going to get the visa. But then what she said next-
Bethany Weathersby:
We went through this whole process and very clearly said why you were coming to America all over it 100 times. And then she said, "Wait, are you going to give birth in America?"
Rose Murage:
Yes.
Bethany Weathersby:
And you were like, "Well, yeah, I am." And then she was like, "I'm sorry." And that was it. And she was like, "No." We were shocked.
Rose Murage:
I mean, she's stressed on that question a lot, "Are you going to give birth there?" And I was like, "Yeah."
Bethany Weathersby:
Because that would make your baby a citizen.
Rose Murage:
Yeah. She was like, "That type of visa..." And I think she said something after that, and then she went like, "I'm sorry."
Bethany Weathersby:
That was devastating.
Rose Murage:
I just went from a 100 to zero.
Bethany Weathersby:
I could not believe that she got denied a second time. We had put our heart and soul into that visa application, because it was her only hope. We felt like it was her only hope to protect her baby, and we really were devastated. Honestly, at that point, I started transitioning from, how do we save this baby's life to how do we prepare Rose for the death of her baby?
Molly Sherwood:
On the next episode, Rose will tell the rest of her story.
Bethany Weathersby:
Whether you're 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, hopefoundation.org.
Molly Sherwood:
The Allo Podcast is a production of the Allo Hope Foundation. It was researched and written by Bethany Weathersby and me, Molly Sherwood. It is produced and edited by CJ Housh and Eric Hurst of Media Club. The Allo Podcast is sponsored by Janssen Pharmaceutical Companies of Johnson & Johnson.