As Rose navigates the final few steps to the United States, she discovers that both the lack of quality care in Kenya and the trauma of her previous pregnancies will follow her to America.
Continuing from last episode, Bethany and Molly listen to Rose Murage’s story. As Rose navigates the final few steps to the United States, she discovers that both the lack of quality care in Kenya and the trauma of her previous pregnancies will follow her to America. But tears of sorrow become tears of joy when she is finally in the hands of a provider who can offer empathetic, quality care, and the world and the podcast welcomes baby Lucas.
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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 https://www.mediaclub.co.
Molly Sherwood:
The information shared on The Allo Podcast is not intended as medical advice. Your medical care decisions should be made in consultation with your physician, who is familiar with your specific case.
Bethany Weathersby:
Hi, welcome to The Allo Podcast from the Allo Hope Foundation. I'm Bethany Weathersby.
Molly Sherwood:
And I'm Molly Sherwood. We are just resuming our conversation with our dear friend Rose Murage. When we left off, Rose was just denied her final appeal for her emergency medical visa to receive the necessary life-saving care that she needed for her unborn baby after enduring the preventable deaths of her first two children, Alexis and Max.
Bethany Weathersby:
And I think that's when our team started to shift into thinking through how to support Rose through the imminent grief of losing her third child.
Molly Sherwood:
But Katie, the director of development for the Allo Hope Foundation, and an Alloimmunized mom herself, who shared her own story earlier this season, found one final option, Humanitarian Parole, and contacted the immigration lawyer at the hospital where she worked to learn about our chances.
Bethany Weathersby:
Yes, we did work on that a lot. And it felt honestly a little bit silly pursuing it at first, because it was such a long shot. They said there were over ... What? 700 applicants ahead of her?
Molly Sherwood:
Yeah.
Bethany Weathersby:
And time was running out for the baby.
Molly Sherwood:
How far along were you by this time, probably 20 ...
Rose Murage:
20 something.
Bethany Weathersby:
Is this when you started having MCA scans?
Molly Sherwood:
Yeah. After the second denial, other moms, probably myself included, would've just laid in bed for a week honestly. You were on the bus, the matatu, driving to different hospitals to try to find someplace that could at least monitor the baby for you. The next day, you were doing that.
You were still pushing through and we were trying to think, "Is there a way to find her care?" That's when you went to that missionary hospital, Kijabe, and there was a really nice Italian doctor there who was willing to do an MCA scan on you to see if the baby was anemic.
I remember thinking like, "Oh, man. Is this doing more harm than good? Because what if the baby was anemic? What if the baby did need an IUT? What do we do?" It would just be torture, you know?
Bethany Weathersby:
We were just excited that, either way, if the baby is anemic or not, you would know. Did you get that MCA scan?
Rose Murage:
I did.
Bethany Weathersby:
Do you remember what it was?
Rose Murage:
It was 1.4.
Bethany Weathersby:
So that was high. At the time, we still didn't know if the baby was antigen positive or negative. And so, there was a hope.
Molly Sherwood:
That test was not available to you like it is here.
Bethany Weathersby:
Right. We were hoping that maybe the baby was negative, anyway. And then, when we saw that 1.4, we were glad that it wasn't in the IUT zone, which is 1.5 and over, but it was like, "This is indicative of some fetal anemia developing." And that was scary, because then it looks like, "You're approaching that 1.5 cutoff." So then, we felt really urgent. I mean, even more.
Molly Sherwood:
And then, I think around then is when the parole application got submitted.
Bethany Weathersby:
Yes.
Molly Sherwood:
And then, we had to wait and we were told it could take months and that you probably wouldn't get it.
Bethany Weathersby:
We thought, "Okay. With a 1.4 MoM," and we're putting in this application for a decision months down the line.
Molly Sherwood:
So then, the only thing there was left to do is wait a week. You went back a week later to get another MCA scan, because that's what we always do is you get weekly MCA scans, and it went down.
Bethany Weathersby:
Yeah.
Molly Sherwood:
It went down and you were really relieved, I remember. You showed us pictures of your MCA scan and you looked at Bethany, and you were like, "I don't know if they did it right."
Bethany Weathersby:
And now, I can't remember exactly what it was that I ...
Rose Murage:
I think it was 1.2 or 1.1.
Molly Sherwood:
It was really low, which was good.
Rose Murage:
It was.
Bethany Weathersby:
We were so excited, because I thought, "What if it's higher?"
Molly Sherwood:
But then, we got worried. Why would it drop like that?
Bethany Weathersby:
They can fluctuate, but there was something about the scans that we saw that didn't line up, but I can't remember what it was.
Molly Sherwood:
I think it looked to you they didn't get quite the right angle to get the right wavelength. Or the Doppler waveform. You were suspicious that it wasn't an accurate scan, but we were like, "Do we tell Rose? How do we tell her?"
Bethany Weathersby:
Right, because she was celebrating.
Molly Sherwood:
Because this was the one thing you're leaning on.
Bethany Weathersby:
Also, what could we do about it if it was higher?
Molly Sherwood:
We couldn't do anything.
Bethany Weathersby:
Right.
Molly Sherwood:
And then, that same day, that was the day you sent a beautiful picture to us. Because you were getting a ride back on the matatu back home and the matatu broke down. You said, "I don't even care. I'm having the best day," and you sent us a beautiful picture of you. Love that picture.
Rose Murage:
Oh my gosh.
Molly Sherwood:
But we were sitting there wringing our hands, really worried.
Bethany Weathersby:
Yes. And then, I think that I shared the scans with Dr. Moise. I didn't tell him my thoughts, but I just shared them and he didn't like the way they looked.
Rose Murage:
Well, I would communicate with Dr. Moise through email. And then, as usual, he would just tell me, "That looks good. That's fine."
Bethany Weathersby:
With your previous scans?
Rose Murage:
Exactly.
Bethany Weathersby:
Okay.
Rose Murage:
And then, that day, he was like ... I can't remember what he said, but he didn't say it was good. And I was like, "Now that's bad. He just doesn't want to tell me, but that's bad." From then, I felt like, "Oh. This is heading somewhere bad."
Molly Sherwood:
I feel like that same day even we had to tell you that we were worried that it wasn't accurate. And I guess Dr. Moise told you too. And then, you had an issue with work too, because you were taking off work so much that they took away your retainer or something like that. Just to add to the stress.
Rose Murage:
Well, they'd say they would take away my retainer if I kept on missing work. But then, I had to. I had to because ... Well, you guys had ignited some hope and there's no way I wasn't going to do everything possible to get through that.
Bethany Weathersby:
But this is the emotional burden that we carry as women. Especially, if you are in a developing country or in a country where you don't have access to these treatments or they're too expensive or they're just unattainable. A lot of times we look at this disease and think, "The baby is at risk," but the mother really does face risk. Even though it might not be physical, it's a heavy burden.
Molly Sherwood:
At this point, we're operating under the assumption now that you're not going to come to America, even though the parole application is pending.
Bethany Weathersby:
We're frantically trying to find treatment for you in Kenya, because it seemed like your baby might become anemic soon. Remember we talked about some hospitals are public and some are private? And Rose, you had heard that maybe there was a private hospital where they could possibly do IUTs. And so, you decided to try even though you couldn't afford it.
Rose Murage:
Yes.
Bethany Weathersby:
But we thought, "Maybe just go check it out and see if it's possible?"
Rose Murage:
All this time, we were just talking with Bethany and I'm updating her. Apparently, he does IUTs and I went on to have an MCA scan. And that was it. That was like hitting that nail on the head.
Bethany Weathersby:
That was at that private hospital?
Rose Murage:
Exactly.
Bethany Weathersby:
Do you remember what the MoM was?
Rose Murage:
1.74. I remember he said that that was the least he got.
Molly Sherwood:
Because 1.5 is, "This baby needs an intrauterine transfusion, an IUT, so he's already at 1.74.
Bethany Weathersby:
Also, usually when they do an MCA Doppler scan, they take multiple readings. That's what he was talking about. The lowest of the multiple readings was the 1.74. Then, it was very clear, "Okay, this baby's obviously being affected." That meant he was Rh-positive.
Molly Sherwood:
Also, to paint a picture of ... Because at this point, I feel like we're all these interconnected sisters experiencing our own lives, but also coming together all day every day about this. This is around the same time, Bethany, that you found out that Josh has cancer, your husband.
Bethany Weathersby:
Yes. Just out of the blue. Found out that my husband has colorectal cancer. That was just absolutely shocking and horrible timing. It's never a good time, really, but I didn't want to put that burden on Rose and did not want to ... She didn't need to know that right then.
I was suddenly out of the picture, because he had all of these scans and appointments and we were trying to figure out what was going on. But also, we didn't want to tell Rose, "Hey, now we've got cancer in the mix."
Molly Sherwood:
Because this was coming at a time when Rose was dependent on all of us, but also you. We all were relying on hearing from each other every day, and we were at this moment where it became clear that Rose's baby needed treatment right now. And that was also maybe the day or two after you found out about Josh, but you weren't ready to share with Rose.
Rose Murage:
I was so used to talking with Bethany all the time. When she went silent, I felt like there was something. It's just that I couldn't figure out what was it, but I felt there was something wrong.
Bethany Weathersby:
We probably should have told her. I don't know. Do you think it was worse that we didn't tell you?
Rose Murage:
Well, I would have been so sad. And then, I remember asking you guys and Katie and I would be, "Is Bethany okay?"
Molly Sherwood:
We were like, "Yeah."
Rose Murage:
I even talked to Bruce and I was like, "Bethany isn't usually quiet and I don't like it. I feel like there's something wrong."
Bethany Weathersby:
I feel it was the peak of, I felt like, your story Rose and your baby's story. Honestly, the peak of the danger. It's the moment that I would be most involved, usually. And so, that was odd, but I just want to say that I felt so confident knowing that Molly and Katie were handling it.
I just had 100% confidence in you. And it was such a wonderful feeling to know that we had this, like you said, sisterhood and this great team. And of course, Dr. Moise and Erin and all the other people. It was this great team effort. It wasn't just me. I felt like I could step back and handle the family emergency. And then, everything did continue.
Molly Sherwood:
The ball was still ... There was just so much momentum already between all of us. And so, that doctor said to you, "We're going to do an IUT."
Rose Murage:
Yeah.
Molly Sherwood:
You probably were thinking this too, but Katie and I were like, "We don't know if this guy can do IUTs." We barely trust a handful of doctors in the US to do IUTs safely, but it was the only possible option. How could we possibly say no?
Bethany Weathersby:
I was relieved though. Weren't you also like, "Thank goodness there's someone who can do this."
Rose Murage:
I was too.
Molly Sherwood:
This is a private hospital, and this is a fetal surgery that's not cheap, and you would need it every two weeks. We were like, "This is not sustainable for the average family to do this."
We were scrambling and we ended up writing a letter to the hospital from the foundation, just sharing your story and sharing the lengths you've gone through. Within a day, they reviewed it and they agreed to drop the price from $1,600 US dollars to $82 or $83.
Bethany Weathersby:
We were so grateful.
Molly Sherwood:
So then, what? Tell us.
Rose Murage:
I remember just seeing the face of that doctor. When he said that we needed to treat baby ASAP, he looked so concerned. Even before he said it, I knew something was wrong. Because he just looked at me, and then he held his face like this. He went like, "We will have to treat baby like yesterday." And I went like, "Oh, no."
Again, I talked to the O Negative Foundation. There's this lady, I love her so much. Her name is Alexis, like my firstborn. She wanted to donate for me, but then high blood pressure went up, but she didn't leave. She just stayed there with me the whole time.
Molly Sherwood:
They wouldn't take her donation because her blood pressure was too high?
Rose Murage:
Yeah. She kept on trying. After some few hours, she would just go test. And then, it would still be up, but she just stayed there with Bruce and I all the time. I just love them so much.
Bethany Weathersby:
Oh, man. That's wonderful.
Molly Sherwood:
So they eventually did secure the blood. I think they had to get blood from a different hospital, because that donor didn't end up being able to donate. And then, you had an IUT.
Rose Murage:
And then, I had an IUT. It was smooth, I would say, because I was just willing to do anything for the baby to be safe. After the IUT, from the OR, I went to the recovery room and I stayed there for a while. And then, I went back to the ward and my phone was off by then. But then, Bruce was there, and I think he was just confused because my phone had some charge, but it was off. I don't know why he wouldn't just turn it on.
Molly Sherwood:
Because we were all dying to talk to you, obviously,
Rose Murage:
And he knew you guys were talking to me. I came back and he was like, "Why did you take too long?" I was having an IUT.
Molly Sherwood:
Duh.
Rose Murage:
So I came back and turned on my phone and I got messages. I think I got 100 messages, because I remember asking Bruce, "What's up with my phone?" I opened up my WhatsApp chats and all I could see was you guys talking about crying in the car, crying in the grocery store.
And I would be like, "What happened? Did something wrong happen?" I've just been told that my IUT was successful, and I knew that you guys were communicating with that doctor. So I was a bit concerned because ... Well, I was thinking all sorts of things.
I thought, "Did something happen? Because he told me it was successful. Did something happen? Why are they crying?" And then, at the bottom, I saw one of you say, "Rose, your Humanitarian Parole was approved." And I was like, "No. Stop it."
Molly Sherwood:
It was crazy. Because what was happening, Rose, is right after you had the IUT, the doctor emailed us. Because Katie had started an email thread with him earlier on, and he emailed us right after and was like, "IUT went great. The starting hematocrit was like 21, the ending was 44," which is ideal.
A low twenties for the fetus to begin is perfect, and then in the forties to end. Perfect. We were feeling great about that. And then, 45 minutes later, Katie gets an email that your Humanitarian Parole was approved. During that whole window, we had not spoken to you, because you were having the procedure and recovering.
Rose Murage:
I remember turning my phone to Bruce and my hand was shaking.
Molly Sherwood:
Also, you were probably really hungry, because you hadn't eaten all day.
Rose Murage:
He was like, "What? Just now?" He was like, "What's going to happen now?" Because we had ... Well, I already had the IUT, and we thought it was going to continue like that.
Molly Sherwood:
It still never felt like the best option, because we couldn't pay for ... None of us could figure out how to make that possible and do that over and over again, and we still didn't know what these doctors' outcomes were for this procedure.
Bethany Weathersby:
Also, the fact that Max and Alexis made it to full term and were born alive, and then did not receive the care that they needed to survive post-birth. We just thought, "Well, we don't know how to make sure that your baby will receive the right care.
Even if all the IUTs go smoothly, the baby is born, we didn't know what to do about that. It did feel like this overabundance of options, suddenly. Even though there weren't an overabundance, but it felt like that.
Molly Sherwood:
But there was two, which was better than zero.
Bethany Weathersby:
Right. Compared to what we'd been working on for months and feeling like the clock is ticking, we're running out of time, and we have no options. And suddenly, within an hour, we had two options.
Molly Sherwood:
So then, you booked her flight for two days later?
Bethany Weathersby:
Yes. We were like, "Rose, I hope that you can pack quickly."
Rose Murage:
It felt like I had carried something and I just put it down.
Molly Sherwood:
I love that thought. I can picture that.
Bethany Weathersby:
Like the burden was lifted after that.
Rose Murage:
Exactly. Exactly.
Molly Sherwood:
Wow. So now, it's time to come to America.
Bethany Weathersby:
You knew that you would be coming and staying for months, because you had to finish out the pregnancy. And then, baby is born. And then, all of the baby's treatment afterwards until the baby is completely cleared of HDFN. That's when you and your baby would return, hopefully. So that's a long stay.
Molly Sherwood:
Because your Humanitarian Parole was six months and that was really exactly as much as you needed.
Rose Murage:
Exactly.
Bethany Weathersby:
And then, Bruce couldn't come, because he didn't have a visa. How did you guys feel about that? How did he feel about that?
Rose Murage:
The most important thing was the baby. We couldn't think of ourselves by then. It was just him, the baby. We are not going to think, "What's going to happen to us? How are you going to feel about this? About me leaving? How am I going to feel about leaving you behind?" It's going to be about the baby. I never got to say goodbye to my mom.
Bethany Weathersby:
Oh my gosh. Yeah. It was very fast at the end there.
Rose Murage:
It was very fast.
Bethany Weathersby:
By the way, you knew it was a boy by that point?
Rose Murage:
Yeah. You knew.
Bethany Weathersby:
I know. I remember being super excited and asking you if you were excited and you couldn't be. Right?
Rose Murage:
I think I just thought I wasn't ...
Bethany Weathersby:
You couldn't even think about it. It's like you couldn't even hope.
Rose Murage:
I didn't want to get too attached.
Molly Sherwood:
When did your mom find out? I guess you told your mom, but you couldn't travel to her because she lives in a village that's not as accessible as Nairobi.
Rose Murage:
Yeah.
Molly Sherwood:
But did you all her and she knew what was going on?
Rose Murage:
I did.
Bethany Weathersby:
Okay, Rose. Tell me, how did that conversation go when you finally could tell your mom, "I've been approved. I'm going to America," and what was her reaction?
Rose Murage:
Well, since you told me about Dr. Trevett's idea of me just coming to the US, that's when I told my mom just to prepare her. So she knew from the beginning.
Bethany Weathersby:
Did she think that was crazy?
Rose Murage:
She did.
Bethany Weathersby:
What did she say?
Rose Murage:
Are they going to come for you?
Molly Sherwood:
Was she the one who thought we were going to sell your organs? That's what I would probably think if my daughter was going to go have free medical care. Free, air quotes, "Medical care." I'd be like, "Wow."
Bethany Weathersby:
Right.
Rose Murage:
She couldn't imagine me going alone all the way to the US. Traveling alone and finding my way through the airports and all that. She asked me if you guys were going to come for me, and I was like, "Mom, I'm not a baby. I can ask for directions."
Bethany Weathersby:
But you had never left the country, never been on an airplane. You're pregnant. That's a lot.
Rose Murage:
She was scared at first, because she knew I was going to fly 16 hours and I was pregnant and I was alone. But then, she also knew what it meant for me to get that medical care, so she was all the way supportive. She prayed for me a lot.
Bethany Weathersby:
I was able to give her some tips on flying pregnant, because I flew seven months pregnant from South Korea to the US and that was a really long flight. You were taking a very long flight, Rose.
Also, when you went to the airport, behind the scenes, Molly and Katie were freaking out. They were just like, "Do you think they're going to let her on the plane? Is something going to go wrong?" I was just like, "It's fine, guys. She's good. She's got her visa."
Molly Sherwood:
I panicked and had ... At 11 o'clock at night, I WhatsApp called a doctor from the missionary hospital to ask her to write a letter for you about COVID. Just to make sure that they didn't require a COVID test from you.
She hand wrote a note on a piece of paper at her little house. Because she wasn't at work, obviously, she wasn't in the hospital. Took a picture of it and sent it to me. And I sent it to you. We didn't think we really needed it.
Bethany Weathersby:
But we were just so afraid of one small thing happening that would prevent this. We did feel peace knowing that he had the IUT. The ending hematocrit was ... What did you say? 40?
Molly Sherwood:
It was in the low forties, which is great.
Bethany Weathersby:
It had just been a few days ago and we felt like baby's fine. How did you feel about all that, Rose? The timing and getting on the flight. Did you think anything was going to go wrong?
Rose Murage:
Well, at that point, no. No. I felt like everything was just flowing nicely. I got the IUT. I'm going to get even more advanced care. Everything just felt like it was flowing nicely.
Molly Sherwood:
But you know what? The day you were going to fly, you messaged us that day and you were like, "Why is he ..." You said he was more active than usual. He was acting strange.
Rose Murage:
I think it was a few days to me flying.
Molly Sherwood:
Maybe so. You were like, "He's acting weird. He's too active. It reminds me of what he was before the IUT." We were like, "No, it's fine. He just had an IUT. We know he's healthy. Don't worry about it."
Bethany Weathersby:
We just tried to reassure you.
Molly Sherwood:
Yep.
Bethany Weathersby:
So you went and you were boarding and we were just so thankful.
Rose Murage:
Yes.
Bethany Weathersby:
Tell us what happened.
Rose Murage:
Oh my gosh, you guys. I got to the airport and I went to check in. I showed them my documents, my passport, and my visa. I see the face change, and I'm like, "Oh, no."
Molly Sherwood:
See, you can read people. This whole thing is a testament to how well you can read people.
Rose Murage:
Someone test me.
Bethany Weathersby:
She's on the rollercoaster. Before she was feeling good, and now you're going to go down to the depths.
Rose Murage:
Plus, deep down, I think I didn't want anything to go bad, because everything was just flowing nicely. I showed them my visa and my passport and his face goes like, "Hmm." And I'm like, "What now?"
He just tells me that I might need to sit down for a little bit. I think it was because I was pregnant. Well, I looked pregnant. They offered me a seat, and after some few minutes, he came back and was like, "I don't think you're going to fly today." I was like, "What?" My heart just went so fast and I wanted to cry.
Bethany Weathersby:
I would've cried, I think.
Rose Murage:
I think I called you or rather messaged you.
Bethany Weathersby:
Yes. Yes.
Rose Murage:
And I was like, "They're talking about me not flying tonight."
Bethany Weathersby:
They're not letting me on the flight.
Rose Murage:
Exactly. He went back and he told me he was going to make sure. He was just going to confirm something about my visa, because I was going to take the London route to Dallas. He came back and told me that it was impossible to go through London, because my visa ... He said they don't entertain my kind of visa. That's what he said.
Molly Sherwood:
And we were livid. Well, we just thought that they were giving you the runaround. We didn't think it was true.
Bethany Weathersby:
I had just never heard of that, because your final destination is the visa that you need. Your layover, I believe, was maybe four hours max in the London airport. They said, "She can't even be on our soil for four hours with that type of visa, because it's not a permanent US visa."
Rose Murage:
Exactly.
Molly Sherwood:
We were calling, because this was also ... You were in the thick of it, Bethany, dealing with family things.
Bethany Weathersby:
I was. It was a really bad time for me.
Molly Sherwood:
It was bad. We were trying to not loop you in too much, but also we need you. And it really helps when you ...
Bethany Weathersby:
Well, I was also like, "I need to know she's on the flight and it's in the air." Also, a whole lot of people were on edge, holding their breath.
Molly Sherwood:
We were freaking out.
Bethany Weathersby:
Just waiting. Even my dad kept saying, "I'm looking at her itinerary. She should be on the flight now." And we had no idea that this was a thing. Also, when I was booking her flight, I think almost every flight that I saw had a layover.
Molly Sherwood:
In another country before reaching the US.
Bethany Weathersby:
Yes. Right. Then, we all just panicked.
Molly Sherwood:
The congressional office was calling the embassy, who was calling the airport to ask these questions. We finally realized the reality was you were not going to get on that plane.
Bethany Weathersby:
But I was on the phone for three hours straight with the people I'd booked the flight through, and then the actual airline. And then, I think I was also talking to you Rose. I was like, "What is that man's name?"
Rose Murage:
Yeah.
Bethany Weathersby:
I was like, "Give him the phone. I'm going to talk to him." The man who would not let you through. I'm going to talk to this guy.
Rose Murage:
Yes. I asked him if he could talk to you. He was like, "I don't think we're allowed to." And I was like, "No. You have to talk to her."
Bethany Weathersby:
Yes. Because I was like, "Rose, just give him the phone." You were like, "I don't know if he's going to do it." And he did.
Rose Murage:
He did.
Bethany Weathersby:
I got his name and was just like, "Explain this to me. I don't understand. Her visa is legit." He was really kind and talked through the whole thing and was really like, "There's nothing we can do about it. The worst thing is for her to go and they're not going to let her off the plane."
Molly Sherwood:
She'll be stuck.
Bethany Weathersby:
And then, what do we do? It was ... What time? It was so late when I finally realized that there was nothing we could do, and I had to call Rose and be like, "Hey. You've just got to go home now. I'm so sorry."
Rose Murage:
I think you were waiting. You were checking if there was a flight.
Bethany Weathersby:
I did. I looked. Because I thought, "Now, we have to get a direct flight from Nairobi to the US. And it wasn't possible that night."
Molly Sherwood:
There's only one. And it runs not currently.
Bethany Weathersby:
Was it 1:00 AM or something?
Rose Murage:
It was. It was exactly 1:00 AM.
Bethany Weathersby:
Oh my gosh. Right.
Rose Murage:
It was 1:00 AM and Bruce just kept on texting me and he would be like, "Did you get on the plane yet? Did you get on the plane yet?" I was getting annoyed. I remember just sending him a text and I was like, "I'm coming back home." And he called me, because he hadn't even eaten.
He was just waiting for me to just tell him, "Well, goodbye." But then, the text he got was, "I'm coming back home." He was like, "What happened?" I think he just asked what happened and was like, "I'm going to come get you."
And I was like, "Oh no. I'm just going to get a taxi and just come home. You just wait for me there." He asked, "Are you sure?" I was like, "Yeah." He actually got me a taxi, because the money I had by then, we had changed it to dollars.
Bethany Weathersby:
All of her money. She had exchanged it to the US dollar. She had no money for a taxi or anything.
Rose Murage:
So Bruce got me a taxi. When we got home, Bruce was just standing outside making sure ...
Molly Sherwood:
Poor Bruce. He's the best.
Rose Murage:
Making sure. I got home safely, at least.
Molly Sherwood:
So you had to book another flight.
Bethany Weathersby:
Yes. Let's get the next direct flight that we can. And then, again, I kept thinking about that IUT. I'm so glad that bought this baby some more time. She would be arriving on a Friday.
Molly Sherwood:
Late Friday afternoon.
Bethany Weathersby:
And that did not match up with Dr. Moise's schedule. Unfortunately, he was out of the state on business. Originally, he was going to meet you at the airport and then pick you up, which was just so kind. I can't get over his generosity and kindness.
Molly Sherwood:
So he took his daughter to pick you up.
Bethany Weathersby:
He did. He arranged for his daughter, Erin, to meet you at the airport. That was really sweet on a Friday evening. They're tired and busy and it was just so lovely. You got the direct flight. Did they let you on that time? Tell us about that.
Rose Murage:
They did. It was still the same time at night. Bruce was so anxious again, because he didn't want me texting him that I was going to go back home again. We completed everything. I went to check in. Everything went smoothly. I was on time. I think we were like four hours early.
Molly Sherwood:
You were really early.
Rose Murage:
And I boarded my flight.
Bethany Weathersby:
This was your first flight ever and it was so long. It was from Nairobi to New York.
Rose Murage:
Yeah. And it was the smoothest flight ever.
Molly Sherwood:
Gosh. That's so good.
Rose Murage:
I got some special treatment in there.
Bethany Weathersby:
You're like ... What? Six months pregnant at this point?
Molly Sherwood:
You were looking beautiful too. You were wearing a ...
Rose Murage:
Kitenge.
Molly Sherwood:
Kitenge. You were looking so beautiful. We were like, "Send us a selfie of you on the plane." You were like, "Girls, that's so embarrassing. I don't want to." And we were like, "Do it."
Bethany Weathersby:
She looked like a model, as always.
Rose Murage:
No. I got some special treatment. Well, everybody was just so nice. I was like, "This is my moment."
Molly Sherwood:
This is my moment. I've arrived. By the way, I just want to say our producers are sitting here so engaged in the story.
Bethany Weathersby:
Really? That's nice. I can't see them.
Molly Sherwood:
They have the biggest smiles on their faces. It's so cool to watch. Shout out to CJ and Eric. All right. Anyway, go on.
Rose Murage:
Well, the flight was super nice.
Molly Sherwood:
Now, you landed. And this is when Dr. Moise's daughter took you straight to Dr. Moise's clinic. This was late Friday.
Rose Murage:
Allow me to talk about Erin.
Molly Sherwood:
Yeah, Erin. Dr. Moise's daughter.
Rose Murage:
Exactly. When she came to pick me up at the airport, she had this huge smile. I was like, "She's just so nice. She feels like my big sister. She's just the best." She picked me up and we went to the hospital and I had to get an MCA scan.
Molly Sherwood:
I remember. His ultrasound technician had to go home to feed her cats, and then had to come back to be able to scan you. But do you remember how that scan went?
Rose Murage:
Well, deep down, I didn't want to go straight home. Because I wanted to find out how my baby was doing.
Molly Sherwood:
And it was about to be a weekend. You didn't want to go the whole weekend without checking on him.
Rose Murage:
Exactly. That's the point. We got to the hospital and they did an MCA on me, but then the faces they had on ...
Molly Sherwood:
Again, you're reading the faces.
Rose Murage:
The faces, they were just not nice. I knew something was wrong. Erin calls Dr. Moise. She actually FaceTimed him and they started talking about, well, the scan. Dr. Moise told Erin to just step out for a moment, and Erin went like, "Well, she knows everything."
Molly Sherwood:
Good for Erin. Yes.
Rose Murage:
She knows everything.
Molly Sherwood:
Just giving you the right to your information. Just go for it.
Rose Murage:
Because I could read from the screen and, well, I knew what that moment what it meant.
Molly Sherwood:
Do you remember what that MoM value was that day?
Rose Murage:
I don't quite remember what the number was.
Molly Sherwood:
It was high again though.
Rose Murage:
But it was high. It was high.
Molly Sherwood:
It was really high. He was starting to have ascites, which is advanced anemia. Which was a shock, because that shouldn't have happened since he had that IUT.
Rose Murage:
Exactly.
Molly Sherwood:
So then, what did they decide to do?
Rose Murage:
I was going to go home and come back on Monday, because it was on a Friday. But then, the next thing I'm told that I'm going to spend the night at the hospital. And I'm like, "What does this mean?" Because I read the MoM score and it wasn't good.
And then, I have to spend the night in the hospital. That shocked me because I just had an IUT that I thought would last me, well, for two weeks at least. But then, I had to spend the night at the hospital. That came as a shock to me and I started crying. I started crying.
Molly Sherwood:
Also, imagine how tired you were by now? You just arrived in America. You came straight from the airport.
Rose Murage:
I was so jet-lagged.
Molly Sherwood:
Yes. Because that was probably, oh gosh, three in the morning your time back in Kenya or something crazy like that. Now, Dr. Moise is saying you're going to have an IUT Saturday morning. He has to staff an entire OR. He has to call the blood bank to get the blood set up. He's flying home himself. And then, Saturday morning ...
Bethany Weathersby:
I remember when Dr. Moise told me the results of the scan and was just absolutely shocked and baffled, as was he. Because of that IUT and that great ending hematocrit. There's a calculation that they use to estimate the drop of the fetal hematocrit after an IUT.
And so, you can go down one per day. The baby would have still been in a fantastic spot by that point, because it had just been ... What? A week since the IUT or so? To see an extremely anemic baby with ascites, some fluids starting to build up, which is the beginning of fetal hydrops. We just couldn't figure out what had happened.
Molly Sherwood:
One thing that was really ... This was Erin's idea. When you went in for the IUT, there's a special test you can do called a KB test, and it will tell you what percent of the blood you're sampling is fetal blood and what is adult blood.
If the baby had a transfusion that was successful, then when Dr. Moise goes in to do your next IUT, they could take some blood and run that KB test. And that should show a certain percentage of fetal blood and a good percentage of adult blood leftover from the IUT that your baby already had, because he was transfused with adult blood.
Bethany Weathersby:
The donor blood is always adult blood.
Molly Sherwood:
Right. If his first IUT had been successful, it should have shown that there was some adult blood in the baby and there was 0% adult blood. That's when we all learned that the blood never made it into the baby during your first IUT.
Rose Murage:
I want to say that, all this time, I don't know about that.
Molly Sherwood:
Really?
Rose Murage:
Dr. Moise told me way after the IUT.
Bethany Weathersby:
Yes. Because we were brainstorming. What could have happened here for this baby to be great, and then suddenly anemic within a week? We couldn't figure it out unless that IUT actually hadn't been successful at all. That whole time, your baby ... Remember that 1.74 MoM? He did not receive any blood since then. How long was that?
Molly Sherwood:
It was a miracle he was alive.
Bethany Weathersby:
All that time, we didn't know that he was getting more and more anemic and that it was a real race against the clock.
Molly Sherwood:
Do you remember his starting hematocrit at that IUT?
Bethany Weathersby:
Maybe 12.
Molly Sherwood:
12.
Bethany Weathersby:
Somewhere around there.
Molly Sherwood:
What was Lucy's hematocrit when you lost Lucy?
Bethany Weathersby:
My daughter Lucy was extremely anemic and her hematocrit was six. Most of the time, you can't really come back from that. Sometimes you can't.
Molly Sherwood:
So that IUT that day saved the baby's life.
Rose Murage:
When Erin FaceTimed Dr. Moise and I knew something was wrong, and then they go like, "We don't think you're going to go home right now, and you're going to get admitted to the hospital." I was like, "Well, that was fast." I was told not to eat anything, and remember that I'm from flying 16 hours.
Molly Sherwood:
You're so starving.
Rose Murage:
Yes. I haven't had anything to eat. I'm exhausted and I'm going to have an IUT tomorrow, first thing in the morning. The morning came and I got prepared for the IUT. I remember thinking, "Once they sedate me, I'm going to sleep 10 hours."
Bethany Weathersby:
Yes. You deserved it.
Molly Sherwood:
Yes, girl.
Rose Murage:
And that's what happened. I slept for too long. And I think Dr. Moise, at some point, was concerned because I slept for too long.
Bethany Weathersby:
But you also had the relief of, "My baby is in the best hands right now."
Rose Murage:
It was really nice. Exactly. I didn't worry at that point. I was like, "This is just going to go smoothly. I don't need to worry about this IUT being painful or something like that." I just knew that everything was going to be okay. And that's why I slept for too long.
Bethany Weathersby:
Okay. You had the IUT. And then, afterwards, were you worried like, "How's the baby?" Or did you just think, "Now, I have to sleep."
Rose Murage:
I had to sleep.
Bethany Weathersby:
That's great. They're going to handle the baby.
Rose Murage:
I trusted them that much.
Bethany Weathersby:
Finally.
Molly Sherwood:
Finally, the burden of advocacy was not on you.
Rose Murage:
From the first time that I knew that Dr. Moise was going to be my baby's doctor, I went to Google and I had a pen like, "Oh. He's good." And once I got here, I was like, "He's the best." Nothing to worry about.
Molly Sherwood:
After, until you could get in the Ronald McDonald House, this was something that was really hard for all of us. None of us lived where you were. We were trying to figure out how to support you without physically being there.
Bethany Weathersby:
We were all in other states.
Molly Sherwood:
Other states. Really far away. Flights away from all of us. You stayed in Dr. Moise's guest house.
Rose Murage:
Yes.
Molly Sherwood:
Until a room opened up for you at the Ronald McDonald House.
Rose Murage:
Yes.
Bethany Weathersby:
Dr. Moise had flown in from his out of town trip late that night. Next morning, did the IUT. And then, did you go to his guest house that same day after the IUT?
Rose Murage:
Yes. After some few hours, he said that we would drive down to his guest house. And that's when he told me about the baby not having donor cells.
Bethany Weathersby:
Wow. Okay. That was very wise of him.
Rose Murage:
I was like, "Why did you keep that from me?"
Bethany Weathersby:
Because you needed to sleep, girl. You needed that 10 hours.
Rose Murage:
He was like, "Well, you needed to sleep," just like you said. And I was grateful that he told me after that, because if he did tell me before, I think I would have panicked. I was grateful that he told me way after that.
Bethany Weathersby:
I felt panicked when I found out that whole time the baby had not received any blood. Even now, it makes my heart just sink. I get goosebumps thinking about that.
Molly Sherwood:
What I kept thinking about is how you had said, "He's moving funny. He's acting the way he acted before he needed his IUT in Kenya." And I kept thinking about how we all said to you ... I know I said to you, "It's fine. Don't worry about it." But that was me not giving enough validity to your intuition, which was correct. I remember thinking that over and over again.
Bethany Weathersby:
But nothing else could have been done.
Molly Sherwood:
We couldn't have done anything. We couldn't have done anything.
Bethany Weathersby:
She was doing the thing that he needed, which was get to America. But just knowing how close it came ... Probably a day or two left, where you could save him, I think. Just thinking, if you take a step back, zoom out, and look at the months of work, months of prayer and effort, and teamwork and strangers helping.
Molly Sherwood:
So many strangers.
Bethany Weathersby:
And it came down to a day or two.
Molly Sherwood:
There were so many days. I feel like we haven't mentioned the piece of this, where there were so many days where amongst us, we were just completely overwhelmed with the enormity of this story. The way that people were just fitting into this crazy story of these lives who became entangled from completely different worlds, it feels.
It was just completely overwhelming. There weren't even words to express that feeling, because it didn't feel human. It didn't feel earthly. It didn't feel even like I was doing something, Bethany was doing something, Katie was doing something. Erin. It felt like there was just this oneness that was doing something.
And I'm saying this as a person who, truthfully, I'm not a typically religious person. It just felt like a very overwhelming certainty that we all had this shared connection that pushed this. It wasn't any one person or one thing.
Bethany Weathersby:
I agree. I think that was the moment where it really brought that into focus. Dr. Moise has said that, in his experience, if a baby is going to die from the IUT procedure, which sometimes can happen without any rhyme or reason ... If that's going to happen, it happens in the first 24 hours after the IUT.
He likes to do a scan 24 hours after the IUT to make sure that the baby is doing well and made it through that portion. And then, the mom can breathe deeply and relax and feel confident about the baby's wellbeing. That happened to be a Sunday. Rose was then an hour out from the hospital.
Molly Sherwood:
Because Dr. Moise's house was like an hour from the hospital.
Bethany Weathersby:
What did he do, Rose? What was his solution?
Rose Murage:
Well, he has this ...
Bethany Weathersby:
A little mini ultrasound machine. I don't know. You saw it, Rose. What was it?
Rose Murage:
Yeah. That's the name.
Molly Sherwood:
Doesn't it plug into his phone and shows you on his phone?
Rose Murage:
Oh my gosh. How do I explain that?
Bethany Weathersby:
He couldn't go into the office to do the scan. And so, he's like, "Just come over to my house and lay on the couch in my living room." His wife was there.
Rose Murage:
He actually came to the guest.
Bethany Weathersby:
Did he? Okay. And his wife came?
Rose Murage:
Yes. Him and his wife.
Bethany Weathersby:
She's so incredible. And he did the ultrasound right there on the couch?
Rose Murage:
Yeah.
Molly Sherwood:
We were holding our breath until that ultrasound. We really were.
Bethany Weathersby:
Just because the baby had been so low starting. We just wanted to know that 24 hours had passed and the baby was doing great.
Rose Murage:
And then, when he was done, he was like, "You're good to go."
Molly Sherwood:
And we all cried happy tears.
Bethany Weathersby:
We did.
Molly Sherwood:
That was crazy.
Bethany Weathersby:
We did.
Molly Sherwood:
But then, very soon after that, a room opened up at the Ronald McDonald House for you, which was great in many ways. Because it was in the same block as the Fetal Center and the Children's Hospital. You could walk to all of your appointments.
Rose Murage:
So convenient.
Molly Sherwood:
Shout out to Ronald McDonald House Charities, in general.
Bethany Weathersby:
They're amazing.
Molly Sherwood:
They provide ... You've said this, because you stayed in the Ronald McDonald House too.
Bethany Weathersby:
I did. I lived there, well, several different times. But one time, I was there for five months.
Molly Sherwood:
But they do really think of everything. Everything. They provide the food. Every meal is out. They have toiletries out. They have the laundry machines. It's a great community. It's a great community. It was so cool.
Rose Murage:
They're like family. They just treat you like you're the most important person.
Molly Sherwood:
What was the rest of your treatment plan?
Rose Murage:
I was going to go after two weeks to get another IUT. In between then, I would go for MCA scans just to check on the baby and find out how the baby is doing.
Molly Sherwood:
So then, you had another in two weeks. How many in total did you have?
Rose Murage:
I had three IUTs with Dr. Moise.
Bethany Weathersby:
We knew that Rose had another IUT coming up. My husband, we needed to get a second opinion for his colorectal cancer. We decided to go to MD Anderson in Houston, Texas. That was pretty close. It was just a couple of hours drive to Rose.
And so, during that trip, I was able to go and finally meet Rose in person for the first time ever. It was just so wonderful. She and I both thought that we would burst into tears. Neither one of us cried.
Molly Sherwood:
Wow.
Bethany Weathersby:
I don't know. I was just overjoyed.
Molly Sherwood:
I did think you would cry, for sure.
Bethany Weathersby:
I cried when I thought about it. Even on the drive there, I was crying thinking about meeting you in person and seeing your beautiful baby bump. And then, when I met you, I was just so excited.
Molly Sherwood:
You guys just clicked right in together. You were running errands together, laughing, sending us videos. It was just two sisters.
Rose Murage:
When we met, it just felt like we knew each other.
Bethany Weathersby:
Yeah, it did.
Rose Murage:
It didn't feel like we were meeting for the first time. It just felt like, "We're used to each other by now."
Molly Sherwood:
"It's you."
Bethany Weathersby:
So I finally got to meet Rose, and we just felt like we'd always known each other. It was actually really surreal, because we're from opposite ends of the world. Also, that night, I had planned to sleep somewhere else. Rose was like, "Just stay with me in the Ronald McDonald House."
And I was like, "Yes, that makes the most sense. Obviously." And so, then I just slept there with her and it was so wonderful. Just such a relief to finally meet her in person. Then, Josh and I, we drove all the way home. It was about an 11-hour drive. On the way, I was sending messages to Molly and I knew that Rose's IUT was coming up. I kind of had a very unusual, just a bad feeling about the IUT. I don't know why.
Molly Sherwood:
You only messaged me separately, because you didn't want to alarm anybody. You were like, "I just have a bad feeling about this IUT." I was like, "I had this weird flutter of a thought." But then, it was like, "It's fine. Of course."
Bethany Weathersby:
And I'd never felt that about any of your other IUTs. It was just so weird. I just felt a heaviness.
Molly Sherwood:
So then, your third IUT was approaching. You had been home for a few days after seeing Rose. And then, Katie also separately messaged me, also trying not to alarm anybody, saying, "I have a bad feeling about this IUT this morning." And I was like, "It's fine. Of course, it's fine." By now, we'd chalked it up ... You were 33 weeks?
Bethany Weathersby:
33.
Molly Sherwood:
33. We were like, "This is probably just because we're nearing the end and we're starting to get this feeling. He also could be fine on the outside," so you start to think that way. That's sort of what, at least, I chalked it up to.
Bethany Weathersby:
I wasn't sure, but I thought, "She's in the best hands ever." But I did message Dr. Moise that morning before the IT and say, "Josh and I are stopping right now, and we're praying for you. We're praying over your hands, that you'll have steady hands, that you'll have wisdom. We're praying that everything will go smoothly."
Rose Murage:
Well, everything was just fine. That morning was ... I didn't feel anything. Well, the baby was just moving okay. But then, they tried to place the monitor. They were trying to watch his heart rate. But then, something was feeling weird. I could watch on the, screen because they would explain how to know if it's going all well and all that.
Molly Sherwood:
Another perfect example of quality empowering care. Let me teach you how to understand your own medical situation.
Rose Murage:
I really appreciated that so much. They did show me, and something just felt weird. Because it would just go down and then up and then down again.
Bethany Weathersby:
They stabilized his heart rate. Everything was fine. And then, you thought, "We were just worrying for nothing."
Rose Murage:
I had the IUT and it went great. Now, I went into recovery and they had to monitor the heart rate again.
Molly Sherwood:
Which they do always afterwards.
Rose Murage:
Exactly. But then, something wasn't right. Before I knew it, Erin came up to where I was. Within a few minutes, I think there was like five of them in there. And then, I knew something was wrong. Because there was no way I was just fine or the baby was just fine, and then I would just have five people just surrounding me.
Bethany Weathersby:
Right. They wouldn't just rush in unless something was up.
Rose Murage:
Exactly. The next thing they told me was they were going to deliver the baby.
Bethany Weathersby:
Which is confusing because you just had a successful IUD. He was stable.
Rose Murage:
It was like someone punched me in the face.
Molly Sherwood:
You were really worried about having a C-section.
Rose Murage:
I was.
Molly Sherwood:
You didn't want that. You did not want that.
Rose Murage:
Well, I wanted to experience the ...
Molly Sherwood:
Epidural?
Rose Murage:
Epidural.
Bethany Weathersby:
Yes. Yes.
Rose Murage:
I wanted to experience that because it feels like a privilege.
Molly Sherwood:
It is a privilege. You're right. Back at home, we forget.
Bethany Weathersby:
You did have a birth plan, right? Besides the epidural. Tell us about that real quick.
Molly Sherwood:
You need to have a birth plan.
Rose Murage:
I remember how much we talked about getting our nails done, while he was going to do it.
Molly Sherwood:
It was supposed to be the three of us. Well, me and Bethany were supposed to be there for his birth, because his induction had been scheduled. We already knew when it was going to be. It was going to be right after Memorial Day.
We were planning on going and we were going to get there a day early, so we could get your nails done, so that you could have fresh nails for your delivery. We were all envisioning this healing experience.
Bethany Weathersby:
We were very scared though. We didn't know what was going on. Why would they be delivering right now?
Rose Murage:
I just remember crying my head off and I kept asking for Dr. Moise. I would be like, "Where is Dr. Moise?" Because well, initially, he was the baby's doctor. I was just worried about the baby, because the way they just did things so fast, I felt like that was an emergency. I remember Erin ... Well, I remember just telling Erin that I wasn't ready.
Bethany Weathersby:
Of course.
Rose Murage:
Because there was no way I was ready for that. There was no way I was ready for an emergency C-section, having my baby at 33 weeks.
Bethany Weathersby:
That's seven weeks early.
Rose Murage:
And then, Erin just went like, "You're ready."
Bethany Weathersby:
We're ready to save this baby's life. No big deal.
Rose Murage:
You're not ready, but we are. And that's how I was sedated. I woke up to ... My baby was out.
Bethany Weathersby:
How crazy? Doesn't that feel so different from your other births?
Rose Murage:
So different. It was so different, because I felt nothing, first of all.
Bethany Weathersby:
Right. That's the nice part.
Rose Murage:
I felt nothing. Once I woke up, I think I was still feeling fuzzy. I remember asking where my baby was. That's when you came. You came so fast. I thought you were just within.
Bethany Weathersby:
Right. I knew that Dr. Moise was going to deliver, because I'd been talking to him right before. "What was going on?" And talking to you. And then, it was like, "It's go time. We're delivering." Then, I thought, "I need to be there. I've got to be there with her."
I just couldn't imagine you having an emergency C-section with no ... Your husband couldn't be there. Your family couldn't be there. Your community couldn't be there. And I know that you had created a new community while you were there, but I was like, "I need to be there."
The quickest and easiest way to get there was to just drive. We had just a couple of days earlier, come back from Texas. Thankfully my husband is like, "Go. I'll take the kids. Everything's fine." My dad rented me a car. It was really nice.
Molly Sherwood:
That was nice.
Bethany Weathersby:
And so, I just got in the car and drove to Texas. That was about a 12-hour drive that time. And I was just so glad when I got there. You were, I guess, pretty recently out of the OR. No. Well, a few hours out. You woke up. You're fuzzy still. You're like, "Where's my baby?"
I remember you and I just talking about the grief of losing a child. You had told me a lot about losing Max and Alexis and how traumatic it was that you never heard them cry after they were born. And that was a really important thing to you, that when this baby was born, you really wanted that baby to cry.
Rose Murage:
Yes.
Bethany Weathersby:
You wanted it to be a different situation. Repeat feeling of a quiet baby.
Rose Murage:
Well, it's funny, because I really wanted to hear the baby cry. But then, once the baby got delivered, I couldn't bring myself to see the baby.
Bethany Weathersby:
Right.
Rose Murage:
Yes. I remember you getting to the hospital and getting me prepared to go see the baby. And I was like, "I don't think I'm going to go with you."
Bethany Weathersby:
Well, first, tell us how the baby was. How was he doing?
Rose Murage:
Well, he was doing great.
Bethany Weathersby:
Okay. He was early, but he was doing fine and he was great. They had just delivered, because he was having those heart decelerations again and they didn't know if he was going into distress. And then, once he was born, they're like, "He's fine. He's fully tanked up on this donor blood. He's just early."
Rose Murage:
He was so pink.
Bethany Weathersby:
He was and he's big. He just looked so healthy. He was okay, but tell me why you felt like, "I cannot go see him in the NICU."
Rose Murage:
Well, the fact that he was delivered at 33 weeks was scary to me, because I didn't know how he would do being an HDFN baby. And then, again, being a premature baby. I didn't want to get attached to him so much. I just feared that, "I'm going to go see this baby, and then get attached too much, and then something bad happens."
Because I was so used to something bad happening at the end of it. The reason why I didn't want to go see the baby was mainly that. I didn't want to see that for the third time. I was trying to protect myself. Let me say, I was trying to protect myself.
Bethany Weathersby:
And that makes sense.
Rose Murage:
It does.
Bethany Weathersby:
It makes sense.
Rose Murage:
I think it does.
Bethany Weathersby:
And it's hard because those babies were full term and still a disaster. This baby is seven weeks early.
Rose Murage:
Exactly. That scared me so much. And the fact that I knew that I was in the right hands, I still didn't want to see him. Not until I felt like I was ready to. But then, I couldn't bring myself to get ready to see the baby.
Bethany Weathersby:
It's heavy.
Rose Murage:
Well, that was until you and Dr. Moise convinced me.
Bethany Weathersby:
Yes. Well, I thought it would be a really important part of your healing. Of course, we didn't want to push you to do anything that you weren't ready for.
Rose Murage:
I think you convinced me with the picture.
Bethany Weathersby:
They were showing us ... We got pictures of him. I think the nurses were showing them to you right away. I forgot to talk about when I got to go see him. So I got to the hospital from the 12-hour drive, and Dr. Moise was there waiting.
I got to see him and congratulate him. And then, we went to the NICU together and I got to see the baby. I just wept. I wept. Oh my gosh. I'm getting sad. I was just so relieved. Dr. Moise was like, "Don't drip your tears on him, please." Oh my gosh. He was beautiful, and he looked great.
And I was like, "Rose needs to feel this. Rose needs to see him. See what she did." You put so much into bringing him here safely, Rose. You really did. That was just a really beautiful moment, Dr. Moise and I just standing there in the NICU, looking at the baby and appreciating the moment. And then, we just showed you a million photos.
Rose Murage:
I think that's when I was convinced that I needed to go and see him.
Bethany Weathersby:
Can you tell us what you named the baby?
Rose Murage:
I think it was my second IUT with Dr. Moise, where he told me that if I didn't have a name for the baby, he wasn't going to do the IUT.
Bethany Weathersby:
He did. For some reason, he really needed to know what the baby's name was.
Rose Murage:
I think he was just protecting me, but he really wanted me to trust that the baby was going to be okay, and it wasn't going to be like how it went with the other babies. Because I was afraid of naming the baby, because I wasn't sure the baby was going to survive. But he wanted me to trust that he was going to be okay.
That's why he said that if I didn't have a name for him, he wouldn't do the IUT. Well, finally, we decided on a name. Erin ... I remember I had no idea. Because again, I didn't even want to be the one who was going to name the baby, because I had the perfect names before for my babies. But then, I just kept losing them. I was like, "Why should I look for a name if I'm going to just lose the baby?"
Up to then, I didn't have a name or I didn't have any idea. Erin comes in and I'm like, "Erin, I don't know how to name the baby. I don't know what name to give the baby." She was like, "I might have an idea." She suggested that we named the baby Lucas, which by the way, I've always considered that name.
Bethany Weathersby:
Wow.
Rose Murage:
Way before. Even way before we met. But then, it wasn't on my mind then. Well, she went like, "How about we name the baby Lucas?" I remember we didn't think twice. We didn't even think of any other name, because that name is a special name. Because it's after Lucy, your baby. Oh my gosh. Goosebumps.
Bethany Weathersby:
Sorry. I'm crying.
Rose Murage:
Oh my gosh. Oh my gosh. If we both cry, who is going to talk?
Bethany Weathersby:
You've got to do it. You've got to be the one, Rose.
Rose Murage:
We named the baby after Lucy, because Lucy's a special baby to us. It feels like Lucy saved my baby. We named our baby Lucas after Lucy. His middle name is Reth, R-E-T-H, which means king, which is a perfect combination. Lucas means, "The bringer of light," and then, "King." So the king is the bringer of light.
Bethany Weathersby:
I think one day there will be babies alive, because of Lucas too in Kenya. I truly believe that. You're just continuing on bringing the light, saving lives. But I felt so honored. Like you said, there's no words how we felt when we found out that Lucas was named Lucas after Lucy.
It's true. The foundation wouldn't exist if it weren't for Lucy. I don't know if Lucas would be here. It was just the most beautiful way to tie our families and our lives and our stories together and our babies. I feel like we're now eternally connected in this incredible way. Okay. Lucas Reth. Do you remember how much he weighed?
Rose Murage:
He weighed 2.3 kg.
Bethany Weathersby:
How many pounds is that?
Molly Sherwood:
We need to Americanize this for us. Oh my gosh. Five pounds. Eric messaged. 5.1 pounds.
Rose Murage:
Five pounds.
Bethany Weathersby:
You decided that you were going to go see him?
Rose Murage:
Well, because everybody just kept on showing me pictures of him, and I felt like it was time. Well, I thought he looked great. From how he was just surrounded by doctors and he was in his own bed, in his own room. It was just so satisfying. And I thought, "He looks great, so I'm going to go see him." I went over and he was just the sweetest thing.
Molly Sherwood:
Oh my gosh.
Rose Murage:
He had so much hair. I remember Dr. Moise is joking around, and he would be like, "Is this your baby?" He was just perfect. And I thought, "I've made the best decision just to come see him now." Yeah. And I thought to myself, "Why didn't I just come out here?"
Molly Sherwood:
Well, I can imagine why you would be worried about going to see him, because you've had babies in the NICU before.
Rose Murage:
Exactly.
Molly Sherwood:
And then, those memories come back.
Rose Murage:
And the NICU wasn't such a nice place to me.
Molly Sherwood:
Right. But he had great color too, which I'm sure ...
Rose Murage:
He did.
Molly Sherwood:
He was moving and crying. That probably helped to set the stage of, "This is different this time."
Rose Murage:
And to see how much he was being cared for, it just made me relax.
Molly Sherwood:
Right.
Bethany Weathersby:
They really stayed on top of everything. The two main risks after birth for a baby with HDFN are anemia, and then high bilirubin. And so, his bilirubin started to go up, right?
Rose Murage:
Yes.
Bethany Weathersby:
And he was not anemic at all, because he had just had that transfusion. He was tanked.
Molly Sherwood:
He totally did not need a transfusion. He was good to go. His tummy even was visibly bigger, because it was full of blood.
Bethany Weathersby:
Good blood. Blood that was supposed to be there.
Molly Sherwood:
As it should be.
Bethany Weathersby:
He did have some breathing assistance, and then he had to do the phototherapy, but it was so different from ...
Rose Murage:
It was so different. He had two ...
Molly Sherwood:
Two overhead lights?
Rose Murage:
Yeah.
Molly Sherwood:
He just had a ton of overhead lights.
Rose Murage:
He had a Biliblanket.
Molly Sherwood:
A blanket underneath. They even used tinfoil wrapped tissue boxes and lined the perimeter of his bassinet to even amplify the light coming in. He was getting full phototherapy intensively to help keep his bilirubin down to help prevent the need for a transfusion, hopefully.
Bethany Weathersby:
An exchange transfusion for high bilirubin. But you weren't allowed to hold him right away, correct?
Rose Murage:
Yes. He was still receiving phototherapy. Well, I want to be honest. I wasn't feeling that bad, because I wanted him to get better. So I just waited patiently. And that first time I got to hold him, it was so satisfying.
It was so satisfying, because my other babies, I never got to hold them from the bed they were in. Coming from the bed would mean they would be being put to the resuscitation bed, so I never got to hold the baby from their beds.
Bethany Weathersby:
I remember that moment when you got to hold him on your chest, and I feel like I could see him visibly relax into you. It's like he knew immediately, "This is my mom."
Molly Sherwood:
You had just been discharged yourself from the hospital?
Rose Murage:
Yes, myself.
Molly Sherwood:
Bethany was sleeping with you in the hospital room, but when you had been discharged, you went back to the Ronald McDonald House. And that's when I arrived and overlapped with Bethany for one night. I remember I arrived and I had this moment of panic, "What am I doing here? How could she possibly want me? I'm just a random person. How could I help her?"
But it totally melted away when I saw you. Because any of the nerves of being the right person for you just totally went away. And then, Bethany slept. She sleeps like a rock. We had to wake her up early, because she had to have a long drive. And I shook that woman so hard. Oh my gosh.
I was getting worried. I was like, "Is she okay?" Anyway, that's happens when your mom of five children and you don't have them around you to sleep like that. Anyway, we woke her the next morning, and it was time for her to go home. And I know that was emotional for you guys to say goodbye to each other.
Rose Murage:
It was. I remember her hugging me goodbye, and I didn't want to hug goodbye.
Molly Sherwood:
I have a picture.
Rose Murage:
We still have that picture.
Molly Sherwood:
I have that picture.
Rose Murage:
And Bruce was like, "Why is she hugging you and you're just there?"
Molly Sherwood:
And you're just sitting there.
Rose Murage:
And I was like, "I didn't want to say goodbye to her."
Molly Sherwood:
You were just trying to keep it together. I know. And then, after that, that marked the transition into NICU life. We were doing that together, sleeping together, pumping together.
Rose Murage:
Snacking together.
Molly Sherwood:
Snacking, Rose says Americans snack too much, which they do, as do I. I brought lots of snacks to store in the NICU. That was important to me. By then, Lucas was doing great as expected. But of course, we knew he was a preemie, and he has HDFN.
The usual things were starting to happen, which for him was that he started to have his bilirubin climb. We had had the chance to ... They were being relaxed at different times, because his bilirubin was looking okay. We took him off the lights. You got to hold him a little bit. And then, his bilirubin started climbing through the night, and they called you on the phone.
Rose Murage:
Yes.
Molly Sherwood:
And I remember they called you and you were nodding and saying, "Yes." You got off the phone and I said, "What happened?" You were like, "I don't even know." And that was my first time really experiencing ... This day changed my life, watching you navigate that.
I could see your wheels turning and all your memories flooding back. Your face was blank, because your mind was somewhere else. Because when they said, "His bilirubin is climbing. He needs a transfusion," all of those feelings were coming back to you. I don't know. Was that the hardest day? I don't know.
Rose Murage:
Well, I would just be so low whenever they would call, because they used to update us every now and then, which I loved. Because I got to participate in knowing how my baby is doing. Well, I didn't experience that back at home, where they would just treat the baby and then just tell me when it came to worse.
They just took me step by step. And if everything happened, they would just call me. If they needed to do something or give him something, they would just call me. When his bilirubin would rise, I would freak out so much, because it happened with my other babies. Especially, with Max, because he had such high bilirubin levels. I also remember when it almost came to him needing an exchange transfusion. That was bad.
Molly Sherwood:
It as really close.
Rose Murage:
That was bad because it reminded me of how Max needed an exchange transfusion and he couldn't wait for it. Before they could get some blood to transfuse him or rather do some exchange transfusion, he just couldn't wait for it.
And I was like, "Are we coming back to that?" That day was bad. I just kept on thinking, because his bilirubin kept on rising, that he wasn't going to wait for that exchange transfusion. It really took a toll on me, but then it went back just then.
Molly Sherwood:
They were worried that he was going to need an exchange transfusion. And so, they wanted to put in ... It's called like a UVC line, which is a central line in through his belly button, but it has to be done in a sterile room. You had to sign consent for it.
Rose Murage:
Exactly.
Molly Sherwood:
You were physically there, but you weren't mentally there. You were mentally somewhere else.
Rose Murage:
Completely.
Molly Sherwood:
You had to sign that. And then, they had to send us out of the room, because the room had to be sterile during the procedure. Then, we were out in the lactation room for a few hours. And that was really hard for you.
Rose Murage:
It was. It just reminded me of my babies a lot and especially what happened with Max. When it came to the exchange transfusion.
Molly Sherwood:
Being with you during that time, I have to say ... I saw you think about Alexis and Max and mourn them and cry for them. And I felt like I was watching you speak to them. I know that was so hard for you, but you knew ... Deep down, you told me a couple of times that you knew that Lucas was going to be okay. Those big feelings weren't necessarily that you were afraid he wasn't going to be okay. It was thinking about what could have been sometimes.
Rose Murage:
Exactly. The fact that Lucas now looks so much like Max, it was really hard just looking at him getting all the treatment he deserved and being cared for and all that. I felt like ... It was just that. That was just what my other babies needed.
Molly Sherwood:
I think that was an important part of your healing. You had been so strong and tough the entire time. You had just gone through and emergency C-section, you had a preemie. All of your plans had changed, and you were being so strong.
And I think that was an important turning point for you in your grief and your healing. They were watching him so often. They were checking his belly every hour for a while. It was creeping up, and they thought maybe he would need an exchange transfusion.
Rose Murage:
I'm glad that they were being just very careful.
Molly Sherwood:
And he didn't though. He didn't need one.
Rose Murage:
He didn't need it. Like the king he is.
Molly Sherwood:
Like the king he is. Like the king he is. Like the king he is. Soon after that, is when Katie arrived. And then, we had another handoff.
Rose Murage:
That was nice.
Molly Sherwood:
Full service from all the ladies. How was Katie's visit?
Rose Murage:
I loved all your visits. It felt like I got to know the three of you weekly. Well, you guys visited me, came to stay with me for a week each.
Molly Sherwood:
Something like that.
Rose Murage:
I felt like I got to know you guys better. And Katie, she's such soft-spoken. Oh my gosh. It was just so hard when it came to you guys going back home. I just wish you guys stayed there all the time until we got discharged or something like that.
Molly Sherwood:
I know. We wish that too. But we knew that ... I feel like we were there during the most important critical times.
Rose Murage:
For sure.
Molly Sherwood:
And then, it was time for you to spread your wings.
Rose Murage:
Yes. It was just preparing me.
Molly Sherwood:
I think so too.
Rose Murage:
To fly.
Molly Sherwood:
Exactly. And then, I feel like we were getting a routine down and we did the same thing every morning and got ready to go to the NICU. You were on a schedule with your pumping and everything, and Katie continued that. And then, that's what you carried on throughout.
Rose Murage:
Exactly.
Molly Sherwood:
How long was he in the NICU for?
Rose Murage:
He was in the NICU for 34 days.
Molly Sherwood:
And then, what was it like when he got out of the NICU?
Rose Murage:
Oh my gosh. I may have to find words to explain that, but it felt so nice to just carry my baby home. I'm going to say home, because remember that I never got to go home with my other babies. This was different. This felt so different. I'm going to go home with my baby. I'm going to take my baby home.
Molly Sherwood:
Wow.
Rose Murage:
It felt so satisfying. Well, I'm yet to find words to describe that.
Molly Sherwood:
I can't imagine there are words.
Bethany Weathersby:
So he got discharged from the NICU. And then, you were like a single mom, basically, with a high needs baby.
Rose Murage:
Oh my gosh.
Bethany Weathersby:
Pretty much.
Rose Murage:
Yes.
Bethany Weathersby:
Was that hard?
Rose Murage:
It was. It was because I had to get him prepared for his hospital visits and all that and get myself prepared and all that. But then, it was doable. I was just happy that I had my baby.
Molly Sherwood:
You would've done anything.
Rose Murage:
If you asked me to just walk all the way to Kenya, I would.
Molly Sherwood:
Exactly.
Bethany Weathersby:
I remember you would just text me and be like, "I can't sleep because I can't stop looking at him." You would just be like, "I can't believe he's here."
Rose Murage:
The first few days, I would just watch him sleep.
Molly Sherwood:
You had so much energy during that time. I was like, "How are you still awake?" You were exhausted. You were physically exhausted, but mentally you were still on all cylinders. You were just ...
Rose Murage:
The happiness that I had taking my baby home and being able to see him lay there and all healthy. Well, the fact that he survived that meant that he was healthy to me.
Molly Sherwood:
Right.
Rose Murage:
That made me so just so happy.
Bethany Weathersby:
Us too.
Molly Sherwood:
He was monitored for how long? Almost four ... Well, after discharge, he was monitored for how many more weeks? Maybe 12 more weeks even?
Rose Murage:
I think it was more than 12.
Molly Sherwood:
It might have been. Also, I think they really liked him and just wanted to see him again. Pretty sure that's what was happening.
Bethany Weathersby:
Lucas was monitored closely for delayed onset anemia, and we kept expecting him to need a transfusion and he never did. Right?
Rose Murage:
He never did.
Bethany Weathersby:
He was having EPO shots to stimulate the red blood cell production, so that he was making his own blood faster and more efficiently. You think that's why he didn't need a transfusion?
Rose Murage:
Well, I think so. What do you think?
Bethany Weathersby:
I think so.
Rose Murage:
That was great. Incredible. He started having them thrice per week, and then went to two days per week and then went to once.
Bethany Weathersby:
And these are the EPO injections? Yes.
Rose Murage:
Yes.
Bethany Weathersby:
Right. And he did great.
Rose Murage:
He did awesome.
Bethany Weathersby:
And he was just like, "Done."
Rose Murage:
Like the king he is.
Bethany Weathersby:
Like the king. He handled it, man. Now, we're here in Kentucky. Rose is going to be flying home to Kenya next week with her healthy baby, Lucas. Lucas will get to meet his daddy in person for the first time. I can't wait. Please take lots of pictures.
Rose Murage:
He's super excited.
Bethany Weathersby:
Yes. Guys, this is what it took to have a healthy HDFN baby in Nairobi, Kenya for Rose and her family. And it shouldn't take this much. It should not. Hopefully, we're going to get there one day where every woman, regardless of where she lives, has access to the right care and can have a healthy baby and a safe pregnancy. Tell me really quick, how is Bruce feeling about meeting Lucas?
Rose Murage:
Well, he keeps on asking. Yes. "Aren't you guys coming tomorrow?" Well, he does know which date we're going to go back home, but he just keeps on joking around and goes like, "Why don't you just think about it and just come tomorrow?"
Bethany Weathersby:
Like you can just decide. Well, thank you so much, Rose, for being willing to go through this really long, detailed, amazing story with us and share it with the world.
Rose Murage:
Thank you. I don't think I can thank you enough.
Bethany Weathersby:
We love you. Do you have any closing thoughts? Or do you have any advice for other women in Kenya who are facing this disease? Or just any last thoughts before we wrap it up?
Rose Murage:
Well, I just want to tell them that it's doable, that it is possible to have your own baby even after being sensitized. A number of moms who I know back at home who are sensitized, they feel like it's not possible to have your own baby after that. But now, I'm going to serve as an example, and that makes me so happy. Because I'm going to be able to stand in front of them and say, "See him? I had him. If I had him, you can."
Molly Sherwood:
As a listener, it might be hard to hear such a tragic story and feel like there's nothing you can do, but you can. Our experience with Rose immersed us into real life for women in Third World countries navigating Alloimmunization and HDFN. We have said time and time again how important prevention, monitoring, and quality care is for this treatable disease.
In Kenya, this disease isn't rare, because prevention isn't widespread. Back at home now, Rose has women coming to her asking why their children keep dying just like hers did. We launched the AHF Africa Program to sustain our advocacy efforts, and so that we can support these women to help them afford even the necessary screening tests that they need to diagnose their disease. This test in Kenya costs between $5 and $10.
For most people in America, that may feel affordable. In Kenya, a live-in Nanny makes $30 a month. We do need your help. The AHF Africa Program needs $12,000 a year to operate. We're including a link to set up a recurring donation to our program. Recurring donors of $50 a month or more will receive update emails from Rose about her progress as AHF's Ambassador to Kenya. Next episode, we'll share more about how you can contribute to the prevention and treatment of Alloimmunization and HDFN Worldwide.
Child:
Whether you are a patient, provider, or otherwise affected by antibodies in pregnancy, we are here for you. We have great resources on our website at allohopefoundation.org. That's Allo spelled A-L-L-O Hope Foundation dot org.
Bethany Weathersby:
The Allo Podcast is a production of the Allo Hope Foundation. It was researched and written by Molly Sherwood and me, Bethany Weathersby. It's produced and edited by CJ Housh and Eric Hurst of Media Club. The Allo Podcast is sponsored by Janssen Pharmaceutical Companies of Johnson & Johnson.
Molly Sherwood:
I didn't cry!