Agne’s experience of growing up in the Soviet Union has left her with a vague medical record that doesn’t explain her severe antibody titer affecting her pregnancies.
Agne’s experience of growing up in the Soviet Union has left her with a vague medical record that doesn’t explain her severe antibody titer affecting her pregnancies. Bethany and Molly experience the culture shock of Agne’s uncommon options following the loss of her first child to a failed intrauterine blood transfusion, followed by two more unthinkable losses as she searches for the information she needs to have her rainbow baby even when it feels impossible.
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References:
Research for this episode provided by Bethany Weathersby and Molly Sherwood of the Allo Hope Foundation. Find more information at https://allohopefoundation.org.
The Allo Podcast is produced and edited by Media Club.
Bethany Weathersby:
The information shared on the Allo Podcast is not intended as medical advice. Your medical care decisions should be made in consultation with your physician who is familiar with your specific case.
Molly Sherwood:
Hi, welcome to The Allo Podcast by the Allo Hope Foundation. I'm Molly Sherwood.
Bethany Weathersby:
And I'm Bethany Weathersby. And we have an amazing guest today, with us, Agne Skardinskiene, and she is incredible. This is my first time to actually chat with her face to face, even though we're on opposite sides of the world. But we've known each other online since 2018 when she reached out to me after reading my blog, and we've gotten to know each other over the years. I feel like we have a really sweet relationship and we've both encouraged each other in different times of distress in our lives and we're both part of the, I guess, severe alloimmunized pregnancy club, which is not a great club to be a part of but we are. It just kind of gives us this immediate connection that we don't have with many other people in our lives. So, even though we've known each other for a really long time, I'm just so thrilled to be able to see her face and talk to her and get to share her story. So welcome, Agne.
Agne Skardinskiene:
Welcome, everybody. Yes. Yes.
Molly Sherwood:
It's so wonderful to have you here and I'm sort of serving as the first time listener. I've heard your story a little bit from Bethany, but certainly not start to finish and not in your own words. So I'm really, really looking forward to talking with you today and I really want to learn more about alloimmunized pregnancies in Lithuania, which is where you are.
Agne Skardinskiene:
Yes.
Molly Sherwood:
Yeah. We also need to talk about the global aspect of it.
Bethany Weathersby:
I'm also very curious about that.
Molly Sherwood:
So before we hear about your first pregnancy, tell us about life in Lithuania and what you do for a living.
Agne Skardinskiene:
So life in Lithuania is really exciting. When I was a child, we were a part of Soviet Union and we were on the [inaudible 00:01:35] regime for some time and it was really horrible because we are a very small nation. Lithuanians are only 3,000,000 people and we talk in very different language, but Slavic language is one of the oldest languages in the world and it is similar to Sanskrit.
Bethany Weathersby:
Oh, wow.
Agne Skardinskiene:
Yeah. So we are really very different from Russians and so on. So when I was young, happened some changes, Lithuania became independent but generally in the country we had to start everything from the white page, from the beginning. And now for years we are in European Union and everything is just wonderful. I was learning in a university, I was studying in Venice, I was studying in Poland. I was studying history and I was struggling a lot.
Currently, I have my own business with my husband for many years. I have started an air freight business in UPS. Now I have my own company in logistics. So also I have some lectures in college where I giving lectures about business. But actually I was never learning any business-
Molly Sherwood:
Except for life experience it sounds like. The best school.
Agne Skardinskiene:
Yes. So we are really happy. With my husband we have resources, we live a happy life, and everything really is beautiful. I feel that now when I have Alana, my daughter, that the life is succeeded everywhere.
Bethany Weathersby:
That's great-
Agne Skardinskiene:
Yeah. It's really important. My family is [inaudible 00:03:17] of doctors and my grandmother and grand grandmother were also, and so always when I was growing, I knew that I have this minus blood group and that I had to protect myself and not to do anything stupid in my life.
Bethany Weathersby:
That's good advice for anyone, even with other blood groups.
Agne Skardinskiene:
Yeah, that something bad can happen, but of course I never had expected that it can be so bad.
Bethany Weathersby:
Right. Yes. That really, really affected your entire life.
Agne Skardinskiene:
Yes. My first pregnancy was when I was at 28 and I remember that day then my doctor, she just told ... actually a friend of my mother, a good friend, she told, "Okay, your girl has minus group. We will check for antibodies just in case." I was around maybe 10 weeks pregnancy and my doctor was calling and she told that it is a mistake, we have to do another test because she never saw such numbers in her life and it cannot be so. So let's do another test. So the titer was 4,000.
Molly Sherwood:
Wow.
Bethany Weathersby:
At 10 weeks?
Agne Skardinskiene:
Yes.
Bethany Weathersby:
In your first pregnancy?
Agne Skardinskiene:
Yes. And we did once again and it was showing the same station, but I was told, "Okay, we don't know what happened," because in all my life, I did not have any operations. I did not have any abortions. I have not lost any children before.
Bethany Weathersby:
No blood transfusions or-
Agne Skardinskiene:
No blood transfusions, but my mother just remembered that when I was born, she saw me only in five days. So maybe during this period something happened. What, I don't know actually, because this reaction is really aggressive.
Bethany Weathersby:
Yes. So can I ask you a question about when you were a newborn? So she didn't see you until you were five days old?
Agne Skardinskiene:
Yes.
Bethany Weathersby:
This was during the communist regime, right?
Agne Skardinskiene:
Yes. But in Soviet Union it was very common that doctors are not saying what is going to you and she had me via C-section and it was one month before, and now I think maybe she had some preeclampsia or something, something like that. I'm not sure.
So after this, she was laying just in hospital, and I was brought to her after five days, and she was asking what was going on but nobody explained. It was a really strict, how to say, system.
Bethany Weathersby:
Yeah. She probably had no power as a patient.
Agne Skardinskiene:
Yeah. And, of course, earlier no husbands were allowed to enter. No family members, nobody. Just a woman having a pregnancy with doctors and that's all.
Bethany Weathersby:
Wow. So does your mom have a negative blood type?
Agne Skardinskiene:
No, my mom has a positive, but family from my father's side, I have a lot of cousins, a lot, and all of they are negative.
Bethany Weathersby:
Wow.
Molly Sherwood:
Interesting.
Bethany Weathersby:
Because if you had HDFN and then they gave you a blood transfusion in those five days, that could have sensitized you.
Molly Sherwood:
Yeah. So is that the best guess that maybe you received a blood transfusion as a newborn?
Agne Skardinskiene:
Yes, probably it was somewhere. I do not have any other explanation.
Molly Sherwood:
Yeah, that does seem to make the most sense.
Agne Skardinskiene:
I just checked my own medical records which I had, and there is really nothing.
Bethany Weathersby:
Oh, that's so interesting.
Agne Skardinskiene:
Nothing suspicious.
Bethany Weathersby:
I guess it's possible that there was, in those 10 weeks of pregnancy, some blood mixing. Do you think, Molly?
Molly Sherwood:
Maybe.
Bethany Weathersby:
And then that was the response?
Molly Sherwood:
Yeah. But to have a response, an antibody reaction, that strong within the first 10 weeks of pregnancy, that's just bonkers. I mean everything is possible with this disease, I feel like. So I'm willing to believe anything.
Bethany Weathersby:
Yes.
Molly Sherwood:
That's crazy, a crazy story, and we're just getting started.
Bethany Weathersby:
Oh my goodness.
Molly Sherwood:
Oh my gosh.
Bethany Weathersby:
Yeah, I know. And you know what? I understand why your doctor said this has got to be a wrong result.
Molly Sherwood:
So what was the plan after? How did you find out?
Bethany Weathersby:
Yeah. How did you feel too?
Agne Skardinskiene:
Actually, I did not [inaudible 00:07:41] a lot about visitation. My mother, she was still alive but she was really worried and my doctor was worried and they sent me to [inaudible 00:07:52] clinic to one doctor which was handling such cases. And she told that, "Now we cannot do anything. We will just watch your pregnancy and come to me every two weeks." I was coming from time to time and so on. And when it was 20-week pregnancy, I came to her for the visit and she immediately just took me to hospital, just laid me down and tried to make this procedure, blood transfusion, and surely it was not successful.
Bethany Weathersby:
So an intrauterine blood transfusion-
Agne Skardinskiene:
Yes, at 20 weeks.
Bethany Weathersby:
And that was at 20 weeks.
Agne Skardinskiene:
And yeah, it was unsuccessful.
Bethany Weathersby:
Oh my goodness.
Agne Skardinskiene:
And that's all. And I had to go to labor, of course. I don't know why they waited for some days. I think that they were thinking that this labor will start naturally, but it did not start. I had a huge temperature and I was almost dying.
Bethany Weathersby:
Oh no. Oh my gosh.
Agne Skardinskiene:
But it's okay. So somehow doctors managed to solve it. And when I was up, the doctor told that, "Yeah, we have some strange situation here. It's bad but you can try for the other baby."
Bethany Weathersby:
Can I ask you about your baby? Was it a boy or a girl?
Agne Skardinskiene:
It was a boy.
Bethany Weathersby:
A boy. I think that would be so hard in the first pregnancy especially.
Agne Skardinskiene:
Yes.
Bethany Weathersby:
And then to think, "Okay, so will I ever be able to have a living baby?" That's an extra stress on top of losing a child. That's really difficult.
Agne Skardinskiene:
So for some years, I even did not want to think about babies and everything, but after some time, of course, I want to have babies. I really love them. I love my family. I love the idea of a family with babies and I always imagined that I have one.
Bethany Weathersby:
Right. Yes.
Agne Skardinskiene:
And after some years, I decided to go to other doctor and to see what we can do, who just checked me. And he told that, "You never know. The possibility is that your baby will be plus or minus 50%."
Molly Sherwood:
Right. So the doctor's saying, maybe you'll have a baby that's negative for the D antibody, and then you won't be worrying about this disease. That's what he was saying?
Agne Skardinskiene:
Yes, he was saying this but he did not explain that my husband, that I have to check if my husband is heterozygous or homozygous, if we can have in general babies with minus blood.
Bethany Weathersby:
So they never did a blood test on your husband at all. So I wonder where he got that idea that he was heterozygous.
Agne Skardinskiene:
I had two more pregnancies, one after the other. And again, second pregnancy I lost in 22nd week and third pregnancy I lost in 26 week. That was my mistake as well, because I was looking for some information but maybe not so deeply as I should. But after I was just spending my nights in Google.
Molly Sherwood:
Sure. I'm sure you were just constantly researching and trying to learn.
Agne Skardinskiene:
And found an article about [inaudible 00:11:19]. And I was reading this article and I felt that something very similar was going to me, some similar situation, not the same but very similar.
Bethany Weathersby:
Yeah, and I have Kell and so not the same antibody but same disease and extreme disease.
Molly Sherwood:
Yeah. Very high titers for both of you.
Agne Skardinskiene:
And actually I even thought that my titer maybe so high, not [inaudible 00:11:42] but maybe [inaudible 00:11:43] as well. So I made also some tests by myself. I realized that this is surely D, no other antibodies. And I tried. So in this case, I was thinking maybe we can try with our husband in vitro.
Molly Sherwood:
Oh, in vitro fertilization. Okay.
Agne Skardinskiene:
Yes, in case if some of the eggs will be with minus group. And as it started to be possible, but then I realized that I have to check my husband for heterozygotes or homozygotes. And I found it was not possible to do this test.
Molly Sherwood:
Really?
Agne Skardinskiene:
Yes. In Lithuania, this problem is a really bad situation. So we went to Riga.
Molly Sherwood:
You went where? Sorry.
Agne Skardinskiene:
Riga. It is in Lavia. It's just other country. And we made it there. We understood that it's not possible to have for us babies with minus group. So this option also.
Molly Sherwood:
Okay, so he's homozygous.
Bethany Weathersby:
He's homozygous. Okay. So 100% of your babies will be positive [inaudible 00:12:48].
Agne Skardinskiene:
So this was to try and to hope for luck, it was just not possible.
Bethany Weathersby:
How did you feel about that? How did you process that?
Agne Skardinskiene:
Oh, it was very hard. It was absolutely hard. It was horrible and it was huge pain.
Bethany Weathersby:
Like your hope had been taken?
Agne Skardinskiene:
Yes. I was thinking with my husband for adoption. Of course, I started to look, to think about this option and so on and so on. But I just wanted so much just to have a baby.
Bethany Weathersby:
And at this point, how old were you then?
Agne Skardinskiene:
I was at 38. One pregnancy and 39, second pregnancy. I'm now 44.
Bethany Weathersby:
Maybe you were 39 when you reached out to me. I can't make the math in my brain.
Agne Skardinskiene:
Yes. Something around that. And yeah, instantly felt that you understand me more than any other doctor, which I'm not, because the doctors were just saying, "Oh, just try one more time."
Bethany Weathersby:
Oh my goodness. Did they say that even after you lost three babies?
Agne Skardinskiene:
After third baby, as it was on week 26, it was quite the biggest success. And actually it was the last blood transfusion. Afterwards, we were prepared to go in labor and my doctor said, "Well, I don't know, we have to do maybe adoption."
Bethany Weathersby:
Oh, okay. So after that, he stopped saying, "Have another baby." Okay,
Agne Skardinskiene:
Yes.
Bethany Weathersby:
Wow. Can I just share my perspective of meeting you online? I felt like you were such an amazing advocate. Like for your future baby, that's how it felt. I felt like you were so determined to have a living baby and you were persistent and you asked so many great questions and I could just see your mother heart very plainly, very visible. It's like you were attached to that baby and drawn to that baby. That's how it felt from my perspective.
I remember you would ask some questions and I would answer, and then it would feel like, okay, we can't figure out how to do this. How can she have a healthy baby? And we would look at all the options. And then you would wait a little while and then you'd come back with another idea and then another question. And that was, I think, a big part of why you have your daughter today. I really do.
Agne Skardinskiene:
From my side to have this article, to read this article, and to find somebody, some people which understand and they have a similar experience, I felt much stronger. I felt that there is a place, there's a person who I can ask about. All this time I was feeling that doctors do not know. They were lost and they do not know what to do because it's a very rare in Lithuania situation. And usually woman just loses her child and that's it.
Molly Sherwood:
So what were the options? It sounds like they were able to try IUTs but not until much later in the pregnancy than what we see sometimes in the US.
Agne Skardinskiene:
Yes. So they managed to do first at Week 21. With my second child, it was done on week 22 and first unsuccessful and I lost child. And with third baby, it was done from week 22 up to week 26 and it was done every week. And for this doctor, it was unbelievable success because he was not doing so early these transfusions.
Molly Sherwood:
So he wasn't even used to doing them that early. That was quite early for him to even be trying that.
Agne Skardinskiene:
Yes. Yes, indeed.
Bethany Weathersby:
So he did have some successful IUTs?
Agne Skardinskiene:
Yes. It was from week 20 ... I don't remember ... from 21 to 26, yes. We had successful one once, I think it was five or something like that, a lot, and all of them were successful but the last one on week 26, it was unsuccessful.
Bethany Weathersby:
Do you know if they were putting the blood into the baby's umbilical cord or into the baby's abdomen?
Agne Skardinskiene:
[inaudible 00:17:22].
Bethany Weathersby:
You think into the umbilical cord?
Agne Skardinskiene:
Yes, I think so.
Bethany Weathersby:
I'm just curious. Some doctors do it in different places in the baby.
Molly Sherwood:
So I take it that plasmapheresis and IVIG are not accessible to you?
Agne Skardinskiene:
No. These procedures are not done here in my case.
Bethany Weathersby:
Yeah. I remember discussing plasmapheresis and IVIG with you, and I thought that could be a way for you to maybe have a surviving baby and it just was not accessible, and that was so frustrating.
Agne Skardinskiene:
Yes. It's not accessible here unfortunately.
Bethany Weathersby:
And then I think we talked about surrogacy, like using a surrogate to carry your baby.
Agne Skardinskiene:
Yes.
Bethany Weathersby:
Tell us about that in Lithuania.
Agne Skardinskiene:
So in Lithuania, actually it is illegal.
Molly Sherwood:
Really?
Agne Skardinskiene:
Yes, it's illegal but of course some of the people going and having it abroad somewhere. But of course it's still illegal in Lithuania and it can be done. It's very hard but it's very complicated and you can be punished for doing that.
Bethany Weathersby:
Oh wow. Really?
Agne Skardinskiene:
Yes. But in Lithuania, we have just in vitro just-
Molly Sherwood:
In vitro.
Agne Skardinskiene:
Yes. The government just started to compensate the two procedures maybe, I don't know, four years ago. Until that everybody has to do on our own money. And usually in Lithuania, all people were going to Latvia, to Poland, to some other countries for that, for this procedure.
Bethany Weathersby:
That's interesting that the surrounding countries seem a little bit more progressive in that.
Agne Skardinskiene:
Yes. The one thing is that we are a [inaudible 00:19:01] country.
Bethany Weathersby:
Catholic.
Agne Skardinskiene:
Yes. And it's always a lot of discussions with church. Myself and my family, we're all Catholics. Here in Lithuania, it's not so progressive visitation. People do not want to use a lot of interventions to solve some problems.
Molly Sherwood:
That's really interesting because I was raised Catholic and I was conceived from IVF, but my family is very Catholic and there were some members of my family even who I think struggled with feeling comfortable with it. And it took a long time for them to feel okay with the way that my parents chose to do that.
Agne Skardinskiene:
And I'm not talking about surrogacy. It would be totally awful.
Molly Sherwood:
Okay, so that's a no-no. Got it.
Agne Skardinskiene:
No, actually I myself, I have a much wider view on all [inaudible 00:19:53] and I want to seek help. But part of our society are still very, very, how to say, old school views. They do not understand surrogacy. They do not understand all these procedures, why you have to do this. And I'm not talking about even a lot of other options, but time is changing and everything is going more and more quickly but I feel that our country in this question is much more old fashioned.
Bethany Weathersby:
So it is interesting to see how the culture of a country can affect the medical care and the options that are available and family growing options. I think that has a big influence on that.
Agne Skardinskiene:
And actually in Lithuania, it's not common to talk about miscarriages and to talk about these problems. And about this situation, knew only my husband, my parents and my aunt. That's all because it was just so common to do like that. But now situation is changing, really changing, and it's much better.
Bethany Weathersby:
That's good. That's good that it's improving. So you had to go on with your life kind of pretending everything was normal to the outside world?
Agne Skardinskiene:
Yes. Because in Lithuania more or less, womens are not complaining about these things.
Bethany Weathersby:
I'm the biggest complainer, man.
Molly Sherwood:
We talk all the time about how women with our disease feel isolated in their experience. And you must have really, really experienced that where the people around you probably didn't have a good understanding of your disease and the amount of medical care you needed. And you felt this sense that you couldn't really share about it too.
Agne Skardinskiene:
Yes. Because in Lithuania, if you'll say that you have some miscarriages, especially in public, a lot of people will say that this is your own problem. Probably you had some abortions or probably you had a lot of partners or something like that. So it's your problem.
Molly Sherwood:
Wow.
Bethany Weathersby:
So there's a lot of stigma attached to stillbirth and [inaudible 00:22:04].
Agne Skardinskiene:
Yes. But now it's more open, it's going better and better.
Bethany Weathersby:
Okay. So let's talk about how you found your way to your daughter.
Agne Skardinskiene:
I have found my way.
Molly Sherwood:
I like that wording. I love that wording. It's like it's a journey.
Bethany Weathersby:
It is.
Molly Sherwood:
I love it.
Agne Skardinskiene:
Yeah. It was a long journey and you was directing me to it. And I was so happy that I met you and that you told about Dr. Moise, that you gave his contacts. I could write to him. And I really believed in all of this. I just felt that this is the right thing and it's real.
But the problem appeared with my doctor. I was so happy about everything. And when we started even communication about this possible trial, I had a visit to my doctor. I told everything. She was, "What? It's nonsense. Somebody wants to cheat on you."
Bethany Weathersby:
Oh wow.
Agne Skardinskiene:
"Did they ask money from you?" I told, "No. They wanted to give me [inaudible 00:23:14]."
Molly Sherwood:
The remedy. Yes.
Agne Skardinskiene:
And until the minute when I went to Belgium Hospital, she was not believing that this is happening.
Molly Sherwood:
Wow.
Bethany Weathersby:
Oh my goodness.
Molly Sherwood:
How did you find out that there was a clinical trial investigating this drug that could potentially help? And then how do you end up in Belgium? You guys missed something for me.
Bethany Weathersby:
I'll explain. So the only option that Agne and I could think of that might work is this trial that was going to happen in the future, but we didn't know when. And so it was hard to wait, especially because she was 39, 40.
Molly Sherwood:
Sue.
Bethany Weathersby:
So this is the Nipocalimab, that's the name of the drug, or M281. And it's a drug that was created to block maternal antibodies from going through the placenta to the baby in utero. At least that's what they were testing to see if it worked in that way and if it was safe. So finally the Phase Two trial was open and, in order to participate, you basically had to have kind of the worst case scenario of this disease.
The requirements were very strict about having severe disease and early disease and that fit Agne's situation perfectly and mine. I mean, it was like, "Okay, this is for us." She reached out to Dr. Moise which, again, that's what was so impressive to me is that she's like, "I'll do whatever it takes, even if it's hard, even if my home doctor thinks I'm crazy." So she really took the initiative and reached out to Dr. Moise and so, as soon as the Phase Two trial was open, we were all kind of communicating together, Dr. Moise. And he said there was a trial site in Belgium and that Agne qualified for the trial. And so obviously there was not a trial in Lithuania, a trial site. So that's how she got to Belgium, right, Agne?
Agne Skardinskiene:
Yes. And after that, we were trying to make a baby and actually we were very lucky very soon, I think maybe in three months or something.
Bethany Weathersby:
Yeah. It seemed very fast. So fast.
Agne Skardinskiene:
Yes. It was very fast. We were so lucky. I also started communication with Belgium site with these wonderful, wonderful doctors, and it was just amazing. First time I felt very secure because this doctor understood what I'm talking about and he was very kind. He understood how the situation is difficult. And last pregnancy, this pregnancy, I ended up with titer 46,000.
Molly Sherwood:
Oh my gosh.
Bethany Weathersby:
Dr. Moise has said that you have the highest titer he's ever seen in his life.
Agne Skardinskiene:
And the last pregnancy, all the time it was the same titer and-
Molly Sherwood:
46,000. Oh my gosh.
Agne Skardinskiene:
But the doctor said it's the same because laboratory cannot account can do any more. So what's the actual-
Molly Sherwood:
Oh my gosh. You know what's so funny? I have this vision in my mind of looking at a sample of your blood and just literally seeing antibodies inside of it to my naked eye.
Bethany Weathersby:
Just crowding each other out.
Molly Sherwood:
I know.
Bethany Weathersby:
Oh my gosh.
Molly Sherwood:
Yeah. Oh my gosh, that's crazy. Oh my gosh. So-
Bethany Weathersby:
Wait. I want to hear about ... Do you know what your most recent titer is?
Agne Skardinskiene:
In Belgium they checked, yes, but I don't know a titer. It was no point to check afterwards because it was all the time 46,000.
Molly Sherwood:
And I guess, to your point, it doesn't really matter exactly. Once you're in the 46,000s, it's probably safe to just assume it's pretty bad. Oh my goodness.
Bethany Weathersby:
That's crazy. So, for reference, I've been told I have the worst case scenario, and my highest titer was 2,048. So hers is so far beyond what mine was.
Agne Skardinskiene:
Yeah. But your is very high as well.
Molly Sherwood:
It is.
Bethany Weathersby:
Yeah, but I've never seen one as high as yours. That's amazing. Okay, so you're starting out with just super high titer at this trial. First of all, how far is Belgium from Lithuania? Did you fly there??
Agne Skardinskiene:
Yeah, I had to travel each week at the beginning. And on Tuesday I was going to airplane, going to Brussel [inaudible 00:27:15], then having this procedure, this medicine infusion, and then taking hotel in the evening and next day coming back again to my home.
And sometimes it was directly from [inaudible 00:27:31] to Brussels. Sometimes it was via Frankfurt. So it's approximately, I think, maybe two and a half or two hours flight.
Bethany Weathersby:
Okay. That's not bad. So you would fly in one day, have your appointments and infusion, stay in a hotel, and then fly home the next day. Every week.
Agne Skardinskiene:
Every week. Yes.
Molly Sherwood:
Starting when? Just starting as soon as you got pregnant?
Agne Skardinskiene:
Yes. As soon as we found, yes.
Molly Sherwood:
So your treatment and monitoring was that once a week you would have this infusion of the drug, and then would you also have an MCA scan or anything else to check on baby?
Agne Skardinskiene:
Yes, sure. We had the best care as possible.
Molly Sherwood:
Oh, that's so great.
Bethany Weathersby:
It's wonderful.
Agne Skardinskiene:
I was feeling myself very secure. The drug, I was not feeling bad afterwards and everything was really wonderful. And as I knew that from week 20, usually my antibodies crossing [inaudible 00:28:18], so we decided with doctor that I have to move to Belgium and to live there until the end of my pregnancy, and also to have labor there.
Bethany Weathersby:
That sounds like a good plan.
Molly Sherwood:
Yeah, that makes sense.
Agne Skardinskiene:
It's two times per week to fly to Belgium.
Bethany Weathersby:
Yeah, it's not worth it.
Agne Skardinskiene:
I had to work also.
Bethany Weathersby:
Right, right.
Agne Skardinskiene:
I'm working lady. So we took our whole things with my husband and we went to live to Belgium, and the doctors were super supportive. Everything was wonderful. I was crazy happy about everything how was going on. But I think from week maybe 24, it's starting to show some problems that the drug was not enough and he's not coping with all these antibodies. And two more weeks, we went only with drug. But on week 26, we had to stop doing this and we had to make till the end of the pregnancy blood transfusions.
Bethany Weathersby:
So I'm guessing the MCA scan was showing elevated MOMs?
Agne Skardinskiene:
Yes.
Bethany Weathersby:
I'm glad they were just watching so closely and you were already there.
Agne Skardinskiene:
Yes. It was so good because we rent flat near hospital.
Bethany Weathersby:
Yeah, that's perfect.
Agne Skardinskiene:
I was so calm that I'm there. I knew that doctors are amazing. Even I had a situation when I just had the feeling that something is not going well, I went to the hospital and they checked and they told, "Yes, we are doing transfusion."
Bethany Weathersby:
Mother's intuition is incredible.
Molly Sherwood:
That is real. Yep.
Agne Skardinskiene:
My doctor told that in trial it was limited, how do you say, amount of the drug.
Bethany Weathersby:
The dose, right.
Agne Skardinskiene:
The dose. And they could not went up this dose, and later on they could try to make this dose bigger, but nobody was thinking that there can be such big antibodies-
Molly Sherwood:
Right, [inaudible 00:30:32] scan.
Agne Skardinskiene:
... so this reaction.
Bethany Weathersby:
Wow. It's just amazing to me to see what a difference the right medical care makes for the patient emotionally. You were in a very stressful situation. That's very stressful to lose three babies. And now you're pregnant again, you're in a foreign country and dealing with all of this. You're trying out a new drug on yourself and your baby and yet you felt peaceful and secure because of doctors-
Agne Skardinskiene:
I was feeling very peaceful and secure. I believed so much in Dr. Moise and for me, he's a miracle.
Bethany Weathersby:
He is. It's true.
Agne Skardinskiene:
I believed in him. I believed in this drug also, and this medical care was absolutely different. Absolutely different how I was checked, how they were doing to me, and all of this procedure. Of course, each procedure, I could not lay down calmly. I was just shaking all the time because the body remembers. And I could not have done anything. But anyway, I was so happy. I was so happy I received this medical care.
Bethany Weathersby:
And how did the IUTs go? Did they all go smoothly?
Agne Skardinskiene:
I think yes. More or less, it was okay. After one, the heart of Alana was jumping a lot. It was such reaction. But after that, it went calm. But in general, the doctor invited my husband to be in the [inaudible 00:32:05].
Bethany Weathersby:
That's great.
Agne Skardinskiene:
Was holding my hand all the time and my husband is very calm about all these things. He is my biggest support and everything was really, really wonderful. I'm so grateful for you, Bethany, for Dr. Moise, for doctors in [inaudible 00:32:27] and all this medical stuff and so on. SO it's amazing really.
Bethany Weathersby:
Really it is. Every baby deserves that level of care. Every baby.
Molly Sherwood:
I have a question. When did you start to believe that you were going to have a living baby?
Agne Skardinskiene:
I had a feeling after talking with Bethany. I had a very strong feeling that something good may happen, will happen.
Bethany Weathersby:
That's going to make me cry.
Molly Sherwood:
Oh, that's so wonderful.
Agne Skardinskiene:
I did not know how. I was praying a lot, of course-
Bethany Weathersby:
I was too. I was praying.
Agne Skardinskiene:
... what else we can do. But I really had a very strong feeling about this. I knew that everything will be okay. I cannot explain it. But really I had-
Molly Sherwood:
Look, this is Agne's interview and we're both crying and Agne's not crying.
Agne Skardinskiene:
Because I'm happy.
Molly Sherwood:
Yeah. I'm crying happy tears.
Agne Skardinskiene:
I'm so happy.
Molly Sherwood:
Oh my gosh. Wow. Okay. What else do we want to share?
Bethany Weathersby:
Okay. Get it together. I'm talking to myself, not anyone else.
Molly Sherwood:
It's so wonderful just the way that a mother's peace and a mother's intuition and knowing just is really powerful and it really means something. And, of course, you were right, Agne. You were right. You had a feeling and you just had that peace that you were going to have a baby in your arms to take home.
Agne Skardinskiene:
Yeah.
Molly Sherwood:
So it sounds like once the baby, once she needed an IUT, you stopped taking the medication or you stopped having the drug infusions.
Agne Skardinskiene:
Yes.
Molly Sherwood:
And that's the way it's supposed to be in the trial, right? I think it is. You take the drug until it's time for IUTs if you need them at all, right?
Agne Skardinskiene:
Yes. The situation was that it was expected that it will be not needed or maybe will be needed at the end of the pregnancy. But yeah, we stopped taking the drug. But anyway, I think it helped a lot.
Molly Sherwood:
I'm sure. Of course.
Agne Skardinskiene:
From the perspective that first IUT was much more later, not in week 20, but in week 26 and actually Alana was in very good situation.
Bethany Weathersby:
She wasn't super anemic.
Agne Skardinskiene:
No, no. They were not waiting.
Bethany Weathersby:
Yes. That's the difference.
Agne Skardinskiene:
Before, doctors were waiting till the last-
Molly Sherwood:
Right, till your babies were already very sick.
Agne Skardinskiene:
Yes. And here it was they were not waiting. They were just suspicion that it's needed. It was just done and that's all, and done on time without delays. They had blood. We do not have to wait for the blood and so on. So I really felt in love with the hospital.
Molly Sherwood:
I love you people.
Bethany Weathersby:
I feel the same way. Sometimes I'm like I love these doctors so deeply and I can't even express what they mean to me. My husband and I talk about it a lot. It's like there's no expression strong enough to show how we feel about Dr. Moise and Dr. Trevett.
Molly Sherwood:
It's sort of like they were part of your family to make a baby-
Bethany Weathersby:
Yes, yes.
Molly Sherwood:
... which is weird to say. Okay, you guys know what I mean.
Bethany Weathersby:
No, you're right.
Molly Sherwood:
They helped bring that baby here just like you guys did.
Bethany Weathersby:
Yes. Okay. When my last baby was born, August, Baby August, when he was born, Dr. Trevett was not delivering him but he was standing right there with Josh. It was him and Josh. And when August was born and I got to see him, I just looked at Dr. Trevett and said, "He's only here because of you."
Molly Sherwood:
And was Josh standing there? Was he-
Bethany Weathersby:
Dr. Trevett said, "Well, I think you and Josh had a lot to do with it too." But yeah, I guess we did. But really it's like they are a part of your child's life in this really special and miraculous way.
Agne Skardinskiene:
We're also thinking about our Dr. [inaudible 00:36:08] from Belgium that he was so patient. He was so kind and so sensitive. I'm very, very grateful for my doctors in Lithuania as well, but I think they did not have the resources and did not have knowledge.
Bethany Weathersby:
I'm sure they did their best with what they had.
Agne Skardinskiene:
Yeah. They were very upset as people and I think it's very hard to see these things.
Bethany Weathersby:
Before we move on, I wanted to say something about the IUTs. I did want to say that the goal with MCA scans is to do what Agne's doctors did with her last baby which was you catch the anemia when it's time for a blood transfusion before the baby is in distress, before there's fetal high drops. Because when you catch it then and treat it then, there's a much higher survival rate for the baby.
There's sometimes a misunderstanding that, oh, if the baby looks perfect on ultrasound, there's no high drops, there's no distress but there's a high MOM, sometimes doctors think, "Oh, well, I don't want to do this invasive procedure because the baby looks fine on ultrasound besides that high MCA doppler scan." But that's the goal. That's why we have that 1.5 MOM cutoff is to treat the anemia at that point because that's the sweet spot. And with my daughter Lucy, my first MCA scan, her MOM was 2.5. So they did an IUT the next day and they were amazed. They're like, "It went so well, it went so smoothly, we got the blood in," and she still died a little over a week later because she was so sick when they did the IUT that it was too late. Just want to point that out, that that's the goal with managing this type of pregnancy with MCA scans.
Molly Sherwood:
How many IUTs did she end up needing, did Alana end up needing?
Agne Skardinskiene:
I think it's seven, something like that.
Molly Sherwood:
When did you deliver her?
Agne Skardinskiene:
At week 32.
Bethany Weathersby:
Oh, really? So did you have an IUT every week?
Agne Skardinskiene:
Almost, every one and a half. It was quite often.
Bethany Weathersby:
So because they stopped the drug, then your antibodies were flooding in, I guess, after that and they wanted to keep her safe and not let her get too anemic. So 32 weeks, did they induce labor or was it a C-section?
Agne Skardinskiene:
Oh, just labor and I wasn't inducted.
Molly Sherwood:
Induced.
Agne Skardinskiene:
Induced.
Molly Sherwood:
I actually like that.
Bethany Weathersby:
I do. That sounds very formal and proper. Yes.
Agne Skardinskiene:
And everything went really nice, but I was just bleeding very heavily after that. And my husband went with the baby and I saw my baby in the evening on wheels, of course, and she was laying like this.
Molly Sherwood:
Oh, with [inaudible 00:38:48]?
Agne Skardinskiene:
Yes.
Bethany Weathersby:
Her arm up over the head. I love that pose.
Agne Skardinskiene:
Sunglasses. Yes.
Molly Sherwood:
Yeah. It's like a little eye mask that they put on them to protect from the lights.
Bethany Weathersby:
That's it. I think that's it, yeah. So she was just enjoying life sounds like.
Agne Skardinskiene:
Yeah, she was doing very okay. She was in NICU-
Molly Sherwood:
NICU, yeah.
Agne Skardinskiene:
... three weeks and afterwards we took her home and she was going very yellow, of course, and we were doing also blood transfusions after [inaudible 00:39:32] week till month number five.
Molly Sherwood:
Wow, that's pretty-
Agne Skardinskiene:
So we started in Belgium and ended up in Lithuania when we came back and the COVID started.
Molly Sherwood:
Oh my gosh. Right.
Bethany Weathersby:
And how many blood transfusions did she have there once you were home?
Agne Skardinskiene:
I think about in Lithuania maybe four, something like that.
Bethany Weathersby:
Wow. So that's great that you had those connections with the doctors.
Agne Skardinskiene:
Yes, because I had done this research before coming back because I knew the risks. If I will come back here and there will be no possibility to receive a proper care, it will be a disaster.
Bethany Weathersby:
I'm so glad you did that work. You were just on top of things.
Agne Skardinskiene:
I knew that's how it is crucial.
Bethany Weathersby:
So can I go back to when she was born? Just really quick, first of all, how did it feel to be 32 weeks pregnant? You'd never been that pregnant before, right?
Agne Skardinskiene:
I was very happy. I was going to hospital like biggest celebration. I was really so happy. I was not afraid. I knew that everything will be okay.
Bethany Weathersby:
So going into the birth, you just felt ready?
Agne Skardinskiene:
Yes. I knew how it is, but I was really very, very happy. And Dr. [inaudible 00:40:48] was delivering. He was very kind.
Bethany Weathersby:
There's a photo that I love you shared with me. I think it's right after she was born. And did they put her on your chest right when she was born?
Agne Skardinskiene:
Yes. Yes.
Bethany Weathersby:
How did that feel to look in her eyes?
Agne Skardinskiene:
It's amazing. She was looking to me with such eyes.
Bethany Weathersby:
Yes. She was so alert.
Agne Skardinskiene:
Yeah. And I don't know, it was just amazing. I remember that everything gone, the pain, everything and all this time I was so happy.
Bethany Weathersby:
Yeah. You're here. I've been waiting for you. It's all worth it. It's all worth it.
Agne Skardinskiene:
Absolutely. And it seems that all this terrible experience, it's somewhere. It's just over and that's it.
Molly Sherwood:
So tell us about her now. How old is she now? What does she like to do?
Bethany Weathersby:
Yeah, what is she like?
Molly Sherwood:
What trouble does she get in?
Bethany Weathersby:
Tell us about your daughter.
Agne Skardinskiene:
She's more than three years old now so she's going to kindergarten and she's very active and, thanks God, she's absolutely healthy. She talks a lot. She runs. She is doing everything. But the biggest thing is that she is absolutely healthy.
Bethany Weathersby:
It's amazing to think about how when she was born, she already had this long story. Her story started way before she was born and it is such an incredible story. And I think when she's older, she will really appreciate that.
I also had a question about your husband. How did he feel about you being in this trial where they're kind of trying out this new drug on his wife and his baby? How did he feel about that and going to another country for care?
Agne Skardinskiene:
He was very calm actually. I think that he also had this feeling that something good is going on and I was telling about all my researches about doctors and he was just supportive. He could not wait to get pregnant for me but when I was going to doctors, when I was going to Brussel, he was trying to be inside next to me and I was doing these blood transfusions. He was sitting next to me holding hand, and we were just trying to survive and to live because we are working together. Yes, we are working hard and, during all these travels, we were working together and on flights, before flights, all the time with computer and also during these drug infusions and so on. So he's like my biggest support and we are doing all together. We live together, we work together. We just raised our business together. So he was not telling much about how he feels. He was just all the time next to me. My husband is very calm.
Bethany Weathersby:
That's great.
Molly Sherwood:
Good quality.
Bethany Weathersby:
Wow. Yes. So what is it like seeing him as a father with Alana? How did that feel to see him hold her for the first time and experience that?
Agne Skardinskiene:
Well, he was running all the time to me, to baby, learning to change diapers. We had this experience and all these things. So he was very busy all the time because I lost a lot of blood. So first days I was just laying. So he was holding her on his chest or changing, running to me, to his daughter. To me, to his daughter.
Bethany Weathersby:
He was taking care of everyone. I love it.
Agne Skardinskiene:
Yeah. He was not talking a lot. He was just-
Molly Sherwood:
Getting work done.
Agne Skardinskiene:
Yeah, he do not like to talk. I think it's also a feature of Lithuanian men. They're not talking about their feelings a lot.
Bethany Weathersby:
A lot of American men are the same.
Agne Skardinskiene:
Okay, so this is the same. He's in action. If he sits and start to think, it's horrible. But when he's running around, everything all right with him. He's driving car, buying something.
Bethany Weathersby:
I love it. Wow. Well, I'm so thankful that you shared your story today. It is truly ... I have no words. I mean it's hard to describe it. It's inspiring.
Agne Skardinskiene:
It's amazing. It's amazing that all this happened because I really had really no hope at all because my situation was very bad and it's so important that you wrote this article about Lucy and so important this Facebook and Facebook community. Also, I was reached as well by other women from Egypt, from other countries, after losing a child. You cannot talk from sorrow. You cannot think. You are in terrible condition.
Bethany Weathersby:
Okay, one last thing I just want to say none of this would've happened unless you had gotten on the internet and did your research like you did and taken that initiative. And it all goes back to that decision of yours and that drive. So yeah, and now we hear her in the background.
Molly Sherwood:
Now we get to listen to her cry. It's a wonderful thing. It is the best sound.
Child:
[inaudible 00:46:23] 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 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 C.J. Housh and Eric Hurst of Media Club. The Allow Podcast is sponsored by Janssen Pharmaceutical Companies of Johnson & Johnson.