Welcome back to Season 2 of The Allo Podcast. Bethany and Molly return and begin the season with Brittany Pineda, an incredible mother whose antibodies were missed in her first two alloimmunized pregnancies. After suffering the loss of her son Kristian, she shares a story of hope as she stops at nothing to get the care she needed even with extremely aggressive disease.
Welcome back to Season 2 of The Allo Podcast. Bethany and Molly return and begin the season with Brittany Pineda, an incredible mother whose antibodies were missed in her first two alloimmunized pregnancies. After suffering the loss of her son Kristian, she shares a story of hope as she stops at nothing to get the care she needed even with extremely aggressive disease. Brittany’s story demonstrates how doctors across multiple states can come together to create a comprehensive and effective treatment plan for even the most complicated situation.
Show Themes:
Links:
Study about missed Rhogam https://www.sciencedirect.com/science/article/pii/S2666577821000368
MFM question checklist Provider Checklist - Allo Hope Foundation
Fetal outcomes are improved if IUTs are conducted before signs of hydrops https://www.sciencedirect.com/science/article/abs/pii/S0002937801313728
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 this is season two. I'm so excited that we're back, I'm back in the recording studio, aka my bedroom corner, for the second season of The Allo Podcast from the Allo Hope Foundation.
Molly Sherwood:
Yes. Yes. From us. Can't believe we're doing... Well, at the end of season one, we were wondering if another season was going to fly, but it turned out that I think some people really liked it. And you and I even, well, this story is an awesome story, and it's going to be for the end of our season, but we were traveling to visit with a patient out-of-state, and when were there, we were there at different times, but different people, different fetal center nurses and other folks, came to find us, and they were like, "You don't know me, but I know your voice." Anyway, we're famous now. It's not a big deal, but I guess that's-
Bethany Weathersby:
And they said they'd listened to the entire first season of the podcast, which kind of blew my mind.
Molly Sherwood:
Yeah. I was so excited, because that means that both patients and clinicians are listening. That is the goal. I was so excited.
Bethany Weathersby:
Right, because we have heard great feedback from a lot of patients that we know, too, and they're sharing it with people they love and they're sharing it with others, so it's really getting out there.
Molly Sherwood:
And I actually had, even after my story was shared, I had people who are really close to me listen to my story, and then contact me after and actually apologized to me, which they didn't need to do and it wasn't expected at all, just saying, "Man, now I get it now." Even my own husband said that to me. He was like, "I get it now, now that I heard it."
Bethany Weathersby:
That's amazing. I didn't know that, about Connor saying that.
Molly Sherwood:
He did. Yeah, it was crazy.
Bethany Weathersby:
Wow.
Molly Sherwood:
All good things.
Bethany Weathersby:
Well, this season is going to be really special because we have a lot of amazing guests sharing their experiences with Alloimmunization and HDFN. We have some international patient stories and incredible HDFN survival stories, which I'm so excited to share. It might be a little intense for some listeners, but this disease is pretty intense, so buckle up.
Molly Sherwood:
Yes. I am buckled, I'm ready, but I felt like but, since it's intense, can I give a spoiler? I'm going to give a spoiler that all of the stories this season do have happy endings. Is that okay that I say that? I feel like I need to give some hope.
Bethany Weathersby:
That's good.
Molly Sherwood:
We're about hope.
Bethany Weathersby:
Yeah, there you go.
Molly Sherwood:
A little hope.
Bethany Weathersby:
Exactly. And I've realized over the years that one of the hardest things about our disease is that it's so rare, I mean, it's not so rare, but at least it feels that way, and we've said so many times in our previous episodes that rare disease means healthcare providers don't see it often, and they don't have the opportunity to become experts on the disease. And I feel like now, I have a pretty thorough understanding of the disease, I feel really familiar with it, and I think a lot of that is because in our support group, we do get to see these cases often. We see them play out every single day, multiple pregnancies every day, and the women keep us updated. We're answering questions. We're very much involved in those. I do think that the missing piece for a lot of the healthcare community is volume, the amount of Alloimmunized patients that they get to see.
Molly Sherwood:
Yeah, I agree. That's what we're hoping to provide more of in this upcoming season. We want to share just super rich, complex stories with our audience to kind of fill in that missing opportunity, otherwise, to be exposed to these cases.
Bethany Weathersby:
And of course, because these women are amazing and inspiring, and their babies are, too.
Molly Sherwood:
Yes. And of course, I'm excited about the research side of this because-
Bethany Weathersby:
Of course.
Molly Sherwood:
Of course. Let me tell you why. Well, I always was like... You're not going to able to pull it back together after this, Beth. Anyway, during the whole first season, we were leaning on other research that we could find to discuss things, but there was always kind of this hole that we have found in the literature that talks about true disease experience across multiple women who seek help from multiple providers all across the country and how it affects them personally, not just the outcomes, not just the treatments. By the end of, let's see, I guess it was between the first season and the second season, we launched an IRB-approved anonymous questionnaire study, and we ended up with really detailed data for 127 mothers detailing 200 pregnancies, all Allo pregnancies, and it talked about disease severity, management, outcomes, and we call it the psychosocial impact, how did the disease affect you emotionally, financially, how did that affect your whole family? It's been a treasure trove so far, and we are going to publish on it, but in the meantime, we will kind of sprinkle nuggets through the season.
Bethany Weathersby:
I'm so excited about that. And Molly, tell us really quick, what does it mean when you say IRB-approved?
Molly Sherwood:
Oh, okay. I'm glad you said that. When you are conducting research, it's super important that it be reviewed by an external ethics committee. IRB means Institutional Review Board, so that means that we put everything together, we made a protocol, we demonstrated the safety of the study, we demonstrated how everything is going to be kept confidential and anonymous, and we had to write this huge protocol and submit it to an IRB for approval to conduct the study, just to demonstrate that we got everything tied up in a bow.
Bethany Weathersby:
Legit.
Molly Sherwood:
Yep, it's legit.
Bethany Weathersby:
Nice. Nice. Here we go. Let's dive into our story today, and of course, I had to start off with one of my favorites ever. Today, we're starting off the season with an amazing HDFN survival story from a fellow Alloimmunized patient and friend, Brittany Pineda. And as you'll probably notice as we progress through the season, these HDFN survival stories almost always go hand-in-hand with a story of great loss and grief, which is the case for Brittany. She's one of the strongest, most courageous women I know, truly, she's an amazing mother to her four children, and not only that, but Brittany's also a fierce advocate for Alloimmunized women and their babies. I'm so inspired by her. Welcome, Brittany. We're so excited to have you on the show today, and I've been wanting to have you on as a guest since we first thought of creating this podcast a couple of years ago, so I'm really honored to get to interview you today and share your amazing story with everybody.
Brittany Pineda:
Thank you all for having me. I'm excited.
Molly Sherwood:
While we were getting ready, Bethany was going potty and getting her banana for a snack, and then I just learned from you that outside of mom world, you are a teacher of teachers. How do you reach that peak in life and career, to be a teacher of teachers?
Brittany Pineda:
Honestly, I think you just do what's best for kids, and by doing that, then instead of just impacting 30 students in a classroom, now you get to impact an entire school, kind of like you guys with this podcast. Instead of just reaching individuals, now we're reaching a lot more people.
Molly Sherwood:
That's a good point. That is a really good parallel.
Bethany Weathersby:
Let's dive in, because you have such a rich story and I want to hear all of it. Let's go back to your first pregnancy, and if I'm remembering correctly, I feel like that's the only kind of more typical pregnancy of yours. Is that right?
Brittany Pineda:
Kind of, yes. For Alloimmunization, yes. Yes.
Bethany Weathersby:
Tell us about that.
Brittany Pineda:
Everything was normal until 20 weeks, and then at 20 weeks, she became growth restricted, so she actually had a lot of monitoring from IUGR. And then they actually thought she had Down syndrome, and so towards the end of the pregnancy, she stopped growing, and that's when we decided to deliver early. At that point, that is when I became sensitized, so they think either one of two things happened. I did get my RhoGAM shot. With that, they either think that the RhoGAM was a faulty batch, because there was a faulty batch back at that timeframe and our hospital did receive it, or they believed, because she was growth restricted, I had a faulty placenta.
Bethany Weathersby:
Brittany delivered her daughter, Trinity, at 38 weeks, and after that, she had a positive antibody screen, but nobody told her that she had tested positive for anti-D antibodies. That meant that she had no idea that her next pregnancy would be Alloimmunized. She didn't have a chance to prepare. And Brittany also had PCOS, so she had to take a fertility medication called Clomid while she was trying to conceive her second baby. Because she was taking that medication, she needed regular blood work. Despite having multiple positive antibody tests through her years of infertility, Brittany was never told that she had maternal Alloimmunization. Five-and-a-half years after the birth of her first daughter, Brittany found out she was pregnant again, and her first trimester blood work, that routine blood work that they do to test for antibodies, came back positive again. Her anti-D titer was 2,048, and still, no one acknowledged this diagnosis or the risk, and nobody told Brittany about it.
Molly Sherwood:
Wait, I need to know more about the pregnancy with Carolyn. So you didn't have any monitoring, I'm guessing, and it was just sort of a typical pregnancy journey?
Brittany Pineda:
Yes. I didn't have any monitoring with her. Honestly, what I was seen for once a month, which was more than I would say normal pregnant women, was to monitor for IUGR because that's what Trinity had, and because they had missed my antibodies still. Then at 36 weeks, I had this gut feeling I'll never forget. I was sitting on the ground leaning on the couch, and I told my husband, Carlos, I'm like, "I feel like she's going to die." And he's like, "Don't say that. You're superstitious. You're going to speak it into..." I was like, "I just have this bad feeling. She's not moving." And so with Trinity, my oldest, my placenta was, was it anterior in the front?
Bethany Weathersby:
Yeah.
Brittany Pineda:
So, she didn't move much, and she was growth restricted, so she was very tiny. Carolyn was posterior, so she moved a lot, a lot, and so I just had this bad feeling, and he's like, "No." I'm like, "No, something's not right. She's not moving," so I called my OB, they brought me in to do an ultrasound at 36 weeks. I'll never forget, so the ultrasound tech is scanning me, and she's like, "Well, she's moving. I don't understand why you're telling me that." I said, "I understand what you're telling me, however she's not moving for what I'm used to. Something doesn't seem right."
And so they did a growth scan, she was only a week or two behind, so she hadn't reached that... Trinity was six to eight weeks behind growing, so they didn't want to deliver, and so when I spoke to my OB, she's like, "It's not as severe yet for IUGR." Still, at this point, my antibodies were not even brought up, and then she told me, "Come back in two weeks." I came back at 38 weeks, she hadn't grown at all, and she actually decreased in size, according to ultrasound, so she delivered me immediately that night, induced me that night.
Bethany Weathersby:
Oh my goodness. And did you still get RhoGAM at 28 weeks?
Brittany Pineda:
I did, yes.
Molly Sherwood:
Wow. Totally unnecessary administration of RhoGAM. It didn't make anything worse, but it was not needed, obviously.
Brittany Pineda:
Yes.
Molly Sherwood:
And then after she was born, how did things look?
Brittany Pineda:
After she was born, thankfully while I was in delivery, I guess, and laboring through the process, thankfully I had a brand-new nurse, and you would never think that a brand-new nurse would catch on, but her heart rate never accelerated, it was basically flatline the entire delivery, and so she kept coming in and giving me options. She's like, "Turn to this side. I don't like what I'm seeing." And I didn't know why, because at that point, all I knew was she wasn't as small as Trinity, and I knew it wouldn't be as severe as Trinity's growth restriction. That was all we were worried about. I'm like, she's measuring about six pounds. And so then when she was born, she came out and she was very white, like ghost white. Still then, I didn't know anything was wrong. I'll never forget, my mama said, "She's white," but she didn't want to tell me, and so she told my dad. She stayed with me, and then they took they to the nursery after, and once they tested her blood, her hemoglobin was only a six.
Bethany Weathersby:
Oh my gosh, Brittany.
Molly Sherwood:
Wow.
Brittany Pineda:
She was really, really, really sick.
Bethany Weathersby:
Oh my gosh.
Brittany Pineda:
And then that's when the neonatologist, and it was a Level II, I guess, NICU is what you want to call it, and it was the corner of the nursery, so I delivered at a hospital that the highest they could go to was a Level II, but really, it was a Level I. It was a regular nursery. And so he came in and told me, "Look, she's really sick. We might have to give her blood," and still at this point, had no idea where this was coming from. He told me, "Her Coombs was positive, did your other kids have that?" I said, "Yeah, it wasn't a big deal. She needed sugar and she stayed under lights for a few hours, and then that was it." And he's like, "No, I don't think you understand, this is a big deal." I'm like, "Um, okay."
Thankfully, the neonatologist was on top of it, and basically they kept drawing her blood. They didn't want to let her out of the lights at all because of how low her hemoglobin was, but also how high her bilirubin was. It was probably day two when they ended up having to do a double volume exchange transfusion on her. They did the double volume exchange in the corner. She had her little corner. I think that's why she has the personality she does, and she's visited the corner the most out of my kids.
Molly Sherwood:
She's like, "I'll go back to my home."
Brittany Pineda:
Yes.
Molly Sherwood:
Oh my gosh.
Bethany Weathersby:
That's just miraculous that she survived the pregnancy with your-
Molly Sherwood:
It really is.
Bethany Weathersby:
I forgot, did we ever ask what antibody you have?
Brittany Pineda:
Well, at that point, I didn't know, but I did find out I have D and big C.
Bethany Weathersby:
Titer in the thousands and no monitoring, she is a miracle. I can't believe she's here.
Brittany Pineda:
She is. And honestly, looking back now, the more that I've learned and gone through with my other pregnancies, looking back, it could have been probably the worst outcome, because at 36 weeks, I knew something wasn't right. How she held on two weeks, I don't know. I'm thankful, but now I know I should have just walked right out of that office and said, "I'm not leaving until you deliver me," just because of how sick she was.
Molly Sherwood:
But you didn't know.
Brittany Pineda:
And even with her hemoglobin, the bilirubin is the more concerning, I would say, issue, is that she could have been given blood instead of the double volume exchange transfusion, but the reason why we had to go that route was because her bilirubin was, I think 26 was the highest it peaked.
Bethany Weathersby:
Wow.
Molly Sherwood:
Oh my goodness. That's really high.
Bethany Weathersby:
That's scary.
Molly Sherwood:
Oh, that could have been scary, too. That could have affected her long-term.
Brittany Pineda:
Yes.
Bethany Weathersby:
Wow.
Molly Sherwood:
Oh, what a blessing.
Bethany Weathersby:
Tell us about Carolyn today.
Brittany Pineda:
She's a firecracker. I would say that personality, I truly believe, honestly, the way God built my kids from the beginning is that's why she survived, because she is a firecracker and a fighter, not going to take anybody's crap. You can put her in the corner, but she's not going to stay. That is-
Molly Sherwood:
I completely believe that. I feel like moms know their baby's personalities in the womb. I've said it before, but I think it's really true.
Brittany Pineda:
Yes. I'll say, Trinity is very calm and she didn't move much and she was very chill. She's not little anymore. She's as big as me. But yes, Carolyn is a firecracker.
Bethany Weathersby:
Wow. Did anyone explain to you the condition? Did anyone tell you about HDFN and that you had these antibodies?
Brittany Pineda:
No. The reason why we delivered at 38 weeks that night, my OB-GYN was actually leaving on vacation the next morning, and so I delivered that that day. And then she came in, which I thought was weird, and she sat on my bed and she's like, "Brittany, I need to talk to you." I'm like, "Okay." I thought it was weird, what doctor would be late to their on vacation to come talk to you? And so that's when she told me, "You do have an antibody. I missed it all the way back to Trinity." And then she said, "This is something you're going to have forever. If you want to have more kids, you're going to have to see a high-risk doctor."
But when Carolyn was born, I never was sat down and told about her. At that point, I was told about me, what I have, but in that moment, it's more important about her, because she's already born. When she got discharged from the Level II NICU, she did have to see a hematologist, but I never was told why. I just knew I had to go get her blood drawn, and she got her blood drawn a few times. I never knew what they were testing, what labs they were running. I just knew she needed her blood work, and then I was eventually told, "Okay, she's in the clear."
Bethany Weathersby:
Let's go to pregnancy number three. I feel like that's probably when I met you, Brittany. I think you were already pregnant.
Brittany Pineda:
Yes. I got on Google again, against my doctor's advice, and I found your blog, because I did not see a high-risk doctor prior to. I got pregnant with him, and then my OB sent me to him for him to take care of my whole pregnancy. And then at that point, I had already known I had the antibodies, they did my titer again, and it was, I don't know if it was 2,048 or 4,096 at the beginning of his pregnancy, but it was extremely elevated. At that point, prior to seeing him, I had already started looking on Google for anti-D antibodies and isoimmunization, and that's how I came across Bethany's blog about Lucy. I reached out to her, and that's kind of where we started off getting, I guess, becoming friends and getting information from my pregnancy.
Bethany Weathersby:
I felt an immediate connection, because very, very few women actually have a titer in the thousands like us. It's like, "Oh, someone has it as bad as me." But I still felt very hopeful about everything, about your pregnancy. When did you first see the MFM? Do you remember what gestation you were?
Brittany Pineda:
I believe my first ultrasound for Christian was 100% at 16 weeks. I don't think I saw him at 12 weeks. I'd seen my OB then, because Christian was not planned, he just was given to us.
Molly Sherwood:
Aw.
Bethany Weathersby:
16 weeks, going back to the first trimester, that's when they took your titer, right?
Brittany Pineda:
Yes.
Bethany Weathersby:
Do you remember what his MoM was with that first MCA scan?
Brittany Pineda:
I don't think it was elevated, I don't, because that was at the point, it was right before a few weeks, I had just reached out to you and gotten information, because this is why I remember. I remember when I had spoken to you and said, "Oh, they want to scan me again at 18 weeks," and you were like, "Absolutely not. Every week, you have to be scanned," and so that two-week gap had only happened twice, and so it wasn't close to 1.5. The numbers were low. Then that kind of made me feel okay with the MFM said 18 weeks, because the only other person given me information or even reading anything, I got from Bethany. At that point, I had known about Dr. Moise from Bethany, and so I had reached out to him, and he said, so my MFM that I was seeing was not trained with him, but there was another MFM in New Orleans that had trained with Dr. Moise, and so he got in touch with him and he kind of monitored my stuff from behind the scenes, I would say, but he wasn't my primary MFM.
I saw my primary MFM for 16 weeks and then 18 weeks, and at 18 weeks it was elevated, but it was right around 1.5. Then they said, "We can wait again to 20 weeks," and I'm like, "Okay, but what about every week?" And they're like, "No, it's not going to matter. You go every two weeks. There's nothing we can do right now, anyway, and you're only 18 weeks. The chance of the baby being affected at this point is not likely, and even with a 2,048," I'm pretty sure with his, it was 4,096 at this point, "titer." I went at 16 weeks, 18 weeks, and then at 20 weeks, I had an ultrasound, and his MoM was above 1.5. I think it was like 1.6 or something. I remember my high risk doctor saying, "I just have to get you to 24 weeks. I just have to get you to..." And I'm like, "I don't understand," and he's like, "Because that-"
Molly Sherwood:
Yeah, what does that mean?
Brittany Pineda:
Well, at 24 weeks, we could save the baby.
Molly Sherwood:
Oh.
Brittany Pineda:
I think what it came down to was he wasn't comfortable doing the IUT, which is why that second doctor, who I didn't meet until the actual IUT in the OR, who did it, I think he wasn't comfortable doing it. He's a lot older, and so I think it was, "Get you to 24 weeks, let the neonatologist deal with it."
Molly Sherwood:
Handle a 24-weeker.
Brittany Pineda:
I think it truly came from not understanding the disease and not understanding what could be done.
Bethany Weathersby:
Right.
Molly Sherwood:
Yeah.
Bethany Weathersby:
And this is at a pretty large hospital, correct?
Brittany Pineda:
Yes. And he actually works in the other branch, which is where the Level IV, it's a true Level IV, NICU is. It's the highest level NICU in our state.
Molly Sherwood:
When you had your first high MCA, which was 20 weeks, you said, how soon after that did you have an IUT?
Brittany Pineda:
I had an IUT at 22 weeks and I think four days with him.
Bethany Weathersby:
After that, then they were scanning every week, correct?
Brittany Pineda:
Yes. We scanned at 20, 21, then 22, and then that's when it was basically too high, and they said that we have to do the procedure.
Molly Sherwood:
It seems like for them, they were treating the IUT as a last resort because they were trying to avoid having to do it, because they weren't feeling comfortable technically with the procedure.
Brittany Pineda:
Yes, 100%. I think it's a scary procedure and it's very hard and it's very technical, especially when babies are that small, the umbilical cord is small, the needle's pliable. I think the goal of getting to 24 weeks truly came from the fear of the procedure. And after, it's taken years to be okay with it, but I respect that you weren't okay with it, however, I think that referral to someone who knows what they're doing, that should have been the backup plan there, not let's get to 24 weeks.
Bethany Weathersby:
Yes. I don't know why there's such a hesitance to refer. We see it again and again and again, where there are experts who do this on a regular basis and they have the experience, even with early IUTs, and so why not just refer to those doctors for these really tricky procedures? I was just looking back at our messages, Brittany, I kind of like that it's documented, so you were talking about being prepped for the IUT and you were just like, "This is scary." I'm leaving out some of the words to make it family-appropriate, but-
Brittany Pineda:
Well, I knew, the first one I had, it's probably in there, that I went to go register for my IUT and the lady said, "She's here for a UTI." I'm like, "No, it's another three letters. It's an IUT."
Molly Sherwood:
Oh no. Not a good sign.
Brittany Pineda:
Honestly, that right there, once I had the ones that I did in Houston, night and day. They knew what IUT stood for. It was very scary. My husband had just become a state trooper at the time, so he was working, and so my dad came with me. They took us in the back, I remember my MFM and the ultrasound tech scanned my stomach, and he's going over the possible risk of the procedure. I remember, he said fetal demise, and my dad was like, "What is that?" And I was like, "Dad, I think that's where the baby will die." And still, it didn't feel like that would be the result of my IUT.
Molly Sherwood:
Sure, yeah.
Brittany Pineda:
I guess I was just so happy I was getting the only procedure that could help him at that point, and honestly, at that point, I didn't even know he was because I was waiting to find out his gender. They scanned me, then everything was fine. They got me prepped. Well, when they came in to do, they did a spinal block, and basically the medicine, it didn't go down and numb my legs, so I'll never forget, they inverted the table, and so it was like to make the medicine go up your spine to numb your stomach. It was a very weird feeling.
Bethany Weathersby:
So, your head was lower than the rest of your body?
Brittany Pineda:
Yes. Yes. And that's actually how I met the MFM who did the procedure, literally inverted on the table.
Molly Sherwood:
You were upside down.
Brittany Pineda:
Upside down.
Molly Sherwood:
Wow.
Brittany Pineda:
He came in and he's like, "I'm So-and-so," and he's like, "Nice to meet you," and I'm like, "Hi." He said, "We're going to do this procedure," and I'm like, "Okay." Do you feel more numb up top? I'm like, "No," and so finally, after a little while, they laid me back flat and my stomach was numb. But just everything, I think every bad feeling I could get or hear, and I vividly can remember even in the OR, the nurse holding the tools. They were on a towel, and she was like, "Are these sterile?" And this other nurse was like, "Well, they're not sterile now because you put them on the towel," and I'm like, "Uh," as you're strapped to the bed, it was very, very uncomfortable.
Bethany Weathersby:
And in IUT, you feel very vulnerable anyway. Even in the best of circumstances, it's a very vulnerable position that you're in, so that would have made it even worse to hear these things that are very disconcerting.
Brittany Pineda:
I knew the procedure was give the baby blood, but I guess I was never sat down and said, "This is going to be what we're going to do first and then second, and these are things you might hear in the OR," because with them and with a spinal block, you're fully awake, so it's almost like an out-of-body experience, like you're watching subconsciously what's going on, because people are doing things and talking as if you're not there, but you're fully aware of what's going on. They started the procedure. I couldn't feel anything, obviously, I was numb at that point, but basically as they were trying to get the needle into the umbilical cord, it kept popping out, and so they kept trying to get in and trying to get in. At that point they increased my anesthesia medicine, because I kept coming in and out of consciousness, basically. I literally, in the middle of it, I'm like, I opened my eyes and he's like, "It's okay. Close your eyes. Everything's fine," the anesthesiologist at the top of your head.
Molly Sherwood:
Right at the top of your head.
Brittany Pineda:
I'm like, "I feel like everything's not all right. Something's wrong. Something's wrong."
Molly Sherwood:
Wow.
Brittany Pineda:
And then I went out of consciousness, I came back to, and I guess it was me fighting the anesthesia trying to hear what was going on.
Molly Sherwood:
Wow. Yes.
Brittany Pineda:
And then the next time I was like, "I still feel like something's wrong," and then I started crying, and he's like, "Don't cry. I'm going to increase your medicine. You're fine. Don't move," because obviously, they don't want you moving. But basically what was going on on the other end of it was the needle kept popping out, and so instead of ceasing and desisting and just saying, "Okay, we're going to try again tomorrow," they kept coming in and out, and they went in and out probably about 15 to 20 times.
Bethany Weathersby:
Oh my gosh.
Molly Sherwood:
Oh my gosh.
Brittany Pineda:
Yes. And so eventually, they weren't able to get the blood into the cord for Christian, and so they put the blood in his belly, in his abdomen.
Bethany Weathersby:
Wow.
Molly Sherwood:
And then what did they tell you after the procedure, in terms of how it went when they were kind of debriefing you?
Brittany Pineda:
They said it was 10:40-ish. I remember because I hadn't eaten all day. They basically just told me I had to be able to get up and walk because I hadn't given so much anesthesia before I could leave, and they told me that it didn't go as well as they had hoped, and it was hard to get in the umbilical cord. They kept trying, and then eventually they just went with the IBT and put blood in his belly ,and that I would need to follow-up in a few weeks is what they said.
Molly Sherwood:
In a few weeks.
Brittany Pineda:
And so when I left at, it was like 11:00-something, it was right before midnight, you're still hooked up to the monitors, he was still alive at that point. I went home, went to bed. The next morning I woke up, and I'm like, "Something still doesn't feel right." I couldn't feel him move anymore, but I thought it was maybe the paralytic medicine that they had given. I think I actually texted Bethany and then I texted another iso mom, Tiffany, and they were like, "Go in to get scanned." When I went in to get scanned, he had passed away, his heart had stopped beating, and so then I had to go through the delivery process.
Bethany Weathersby:
That's horrible. That's so bad. I remember, I'm looking at the messages again, and just seeing that you felt physically horrible after the IUT, and you were kind of like, "I wonder why I feel this terrible physically," and it was confusing, because usually you don't feel like that. You were saying, "My blood pressure is really low." Still, even with all of that going on, I guess it just didn't really cross my mind that he might not survive.
Brittany Pineda:
I don't think it crossed my mind, either. Even when I didn't feel him move, I'm like, "Oh, well, he had the procedure that he can have," I think probably because I didn't have the knowledge I do now and kind of everything I went through then with Micah. At first, when I did the scan, and this is corroborates going in 15 to 20 times, inside of his umbilical cord, it literally looked like bubbles, and so there were blood clots in there. I remember asking in the room, I'm like, "Could he have died from that, because you tried to get in the cord?" And they're like, "We will never have an answer, per se." Honestly, I think from the beginning, from the UTI, it was little hints, I'd say, of God preparing me for what was to come.
Bethany Weathersby:
Was Carlos with you when you had the scan?
Brittany Pineda:
He was not. I actually have a picture of him and Carolyn sleeping in the bed, because she was a spicy toddler then, because it was like 8:00 in the morning. I took a picture of them sleeping, and then I just went to the hospital by myself.
Molly Sherwood:
Wow. Do you want to share anything about those moments and what happened next and the delivery?
Brittany Pineda:
I would say one, I think I was in shock, and I truly think that comes from just not being educated on the antibodies at that point, how serious my condition was, even prior to the IUT. Even though my dad asked what fetal demise was, like saying, "Oh, the baby could die," I said it as if that would never happen, because you're finally getting the help you need. I think when he first passed away, I was in just shock, like, what? And so then I had to deliver him. I think that, at that point, being hooked up to everything, but knowing you're going to leave the hospital without a baby, and I guess...
Without a live baby, because when you have a stillborn, they gave me the option of taking him, because he's not considered a person, but 48 hours prior, you're doing a procedure to save that so-called person. I think the whole delivery, it's different when you have a stillbirth, so they gave me morphine for the pain instead of other medicine they would give me, like an epidural, and so I think at that point, I just kept pressing the morphine button anytime as soon as I could to mentally block out what was going on. I delivered him, my family came to see him, two of my students came, and it was hard.
Molly Sherwood:
Tell us his name.
Brittany Pineda:
Christian Michael, well, Pineda. Christian Michael Pineda.
Bethany Weathersby:
How much did he weigh? I feel like he looked like his daddy.
Brittany Pineda:
He did have little calf muscles, which is-
Bethany Weathersby:
That's so cute.
Brittany Pineda:
It's like I go to the gym and I'm still not muscular, and you're born at 22 weeks and you have calf muscles. [inaudible 00:24:20. He really did. He was a one pound even, actually.
Bethany Weathersby:
Oh, wow.
Brittany Pineda:
I think he was 12 and three-quarters, because Trinity was 17 and three-quarters, and they were the exact same, just a few inches shorter.
Bethany Weathersby:
Wow. Except that she was full-term.
Brittany Pineda:
Yes.
Bethany Weathersby:
That's amazing.
Brittany Pineda:
I would say when your first one's so small, I think they're all so big compared to her, so for being 22 weeks, he was big.
Molly Sherwood:
How did your family process his loss and proceed with your grief in the time after his delivery?
Brittany Pineda:
I think they were all kind of shocked also, because I'm the first person in the family that has had anything happen while pregnant in terms of antibodies. I had an older sister, so my mom's first daughter, she had passed away because she was stuck in the birth canal too long, and back then, because that was 42 years ago, they wouldn't let nurses deliver, and so her umbilical cord detached and then she wound up having seizures. And so I think because my sister had passed away, that my family had kind of already been prepared for that. It definitely took a toll on them. I think it took a toll on Trinity the most. Carolyn was only two, Trinity was seven.
Bethany Weathersby:
Oh my gosh. That's how old Nora is right now, and I can't imagine how hard that would be. And she's such a tender spirit, too, I feel like.
Brittany Pineda:
I would say who it impacted, I'd say my close family, my mom, my dad, my grandmother, my brother, those, and then my friends that are like family.
Bethany Weathersby:
And Carlos,
Brittany Pineda:
I think he grieved in his own way. I think as moms and dads, you grieve differently. I think it's something, when you go through a high-risk pregnancy and then a stillbirth, I'm not sure anyone else other than a mom knows what that feels like. I would say after, I think I found more support and closeness in Bethany or Tiffany or other moms who had gone through it, just because I think without saying anything, you understand?
Bethany Weathersby:
Yeah. For sure. Yes. Looking back, I feel like you did a really great job of advocating during that pregnancy, and I remember that you were asking the right questions, you were kind of pushing back against your doctors and trying to get more monitoring. I'm wondering if that's why it did feel kind of like a relief once you were finally having the IUT, because it's like, "Okay, I did it. I got him the care he needed," and there's just no way anyone could have known that that would have been the outcome with his first IUT. It is hard, as a loss mom, looking back and thinking, oh, I should have maybe have done this differently or done this differently, but from my perspective, you did an amazing job advocating for him, and doing your best with what you knew and the tools that you had at the time.
Brittany Pineda:
I think now that the years have passed, I've given myself grace on that to say that. Micah's pregnancy is a completely different outcome because I learned to stand on my ground.
Molly Sherwood:
And that's such a common trajectory. It's a terrible, awful thing that you suffered the way you did, but so many times, we see that's when moms rise after, and their children that come next are only there because of the children they lost.
Bethany Weathersby:
And I think that's why sharing your story is so valuable, because other women can hear this and can rise up without having to lose a child first, hopefully. That's our hope, and that's one of the reasons we do what we do at the foundation, is every child should receive the care that Micah received and should have an outcome like that.
Molly Sherwood:
Let's talk about, I want to hear about your pregnancy with Micah.
Brittany Pineda:
That was a wild time.
Bethany Weathersby:
I want to know, what gave you the courage to try again?
Brittany Pineda:
I feel like after Christian passed away, I knew I wanted more kids. Obviously, he was my first son, I have a stepson though, but I'm like, I want to have a son, an alive son here that's with me. But I really just felt, I would say, peace with, and it's a weird thing, because while I was grieving, I felt peace, and so I wasn't scared to get pregnant. I'll never forget at that point, I had contacted Dr. Moise and I said, "Hi, again. This is what happened," and he was like, "Unfortunately, that is a chance with any procedure." And I remember asking him, "How long should I wait to get pregnant?" He said, "About a year," and I was like, "Yeah, that's not going to happen, but okay."
Molly Sherwood:
You're like, "I'm still in charge here."
Brittany Pineda:
He was like, "There's really no set answer, but a year is a good timeframe," and I was like, "Yeah, that's not going to happen." I didn't tell him that. And then it was like maybe a month later, I messaged him and was like, "Hey, Dr. Moise, I'm pregnant," and it was literally two months, I would say, two-and-a-half months after everything had happened with Christian, so I guess it was my first cycle after.
Bethany Weathersby:
Wow.
Brittany Pineda:
He's like, "Oh, okay. Well, you didn't want to wait." Since Christian passed away and Micah was born was within a year, so it was definitely close.
Bethany Weathersby:
Wow. What a year.
Molly Sherwood:
Wow.
Brittany Pineda:
I know. And so with Micah, I knew as soon as I got pregnant, I think as soon as I sent that email to Dr. Moise, "Hey, I am pregnant. It really did turn into, instead of me, I think because I was so busy grieving Christian and just being a mom to the girls, that it never.... I should have planned better for his pregnancy. I should have. I should have known, even though I'm at peace to have another one, I want another pregnancy, I probably should have been more prepared in terms of the plasmapheresis, the IVIG, because all those, I didn't even know that then because I didn't have it with Christian or with the girls. It kind of felt like at that moment, once I found out and they did my blood work, that was six weeks or so, it was just like bam, bam, bam, bam after that. It just never stopped, and so his pregnancy, I would say, was very, very stressful.
I think I took it from an approach of it was a medical pregnancy and I didn't emotionally get attached after what happened with Christian, and it just felt like, from the beginning, I was constantly playing catch up and getting ahead. I had transferred my care fully to the MFM in New Orleans. Once my antibody was higher, I knew at that point that I wanted to see Dr. Moise, and so he was a consultant, is what we called him, on my case, but he was a very loving man and answered all my emails that I had. And so instead of like with Christian, he was kind of helping the MFM doctor that trained underneath him in New Orleans, he was more so an integral part. I started plasmapheresis at 10 weeks, maybe.
Bethany Weathersby:
And you did that with the New Orleans MFM?
Brittany Pineda:
Yes, but we actually had a team phone call, me included.
Bethany Weathersby:
Great.
Brittany Pineda:
And so that's one thing I would say, standing my ground as a mom with this type of condition, you are the most important person in your childcare, because oftentimes, you have a high-risk doctor here or a consulting doctor here, an OB here, and then even on the tail end of it, when you have the baby, the pediatrician, the neonatologist in the NICU, there's a lot of moving parts, and there's one I would say constant, and that's you, and so it's a lot of information to keep up with. We had a team meeting. I had one doctor who prescribed my IVIG, one who did the plasmapheresis, my high-risk doctor, my OB, and Dr. Moise, and myself, so it was six of us. Each person basically was responsible for one part of it, just to make sure nothing got lost or no information was lost.
Bethany Weathersby:
I think it's such a great idea, and I don't know if I've ever seen that happen. Literally, I can't think of anyone where all of the specialists are together and all meet and talk about your case, and just confirm their roles and how they're going to work together. Whose idea was that to have that meeting? Do you remember, or do you know?
Brittany Pineda:
I think it was more so because Dr. Moise was in Texas and it was hard for him to communicate with the different doctors, it's not the same hospital, and so he wanted to speak to some of them. When I met with the plasmapheresis doctor and then the IVIG doctor, I was like, "Look, my MFM wants to speak with you. He's going to be taking care of me," and so that's kind of where it came from. I would say it was more so Dr. Moise's ideas, just so he knew... He wanted to make sure that they were giving me the correct care that I needed, because New Orleans isn't known for Alloimmunization and had already missed it for my first two pregnancies and everything that happened with Christian.
And I'll say probably the biggest communicator in terms of making it happen, I think myself and Dr. Moise, and then third, my MFM here, my primary who was Trinity and Christian's, just because I think at that point, he knew, he had seen everything that happened with Christian, he knew it was missed all the way back to Trinity when I was in his care, and he knew he couldn't care for me. They spoke twice. The first time I was in the meeting, the second time I wasn't. The first time was prior to my starting plasmapheresis and IVIG, and I had my port put in, and that was the most painful thing ever.
Bethany Weathersby:
Oh, that's terrible.
Brittany Pineda:
I'll take giving birth any day.
Bethany Weathersby:
Right?
Brittany Pineda:
They take this machine and like smash your head. I don't want to say that, but that's what it feels like, because they don't want you to move as they stick it down your jugular vein, and you can't have pain medicine and they're like, "Don't move. Don't move. Don't breathe, don't move."
Molly Sherwood:
Oh my gosh.
Brittany Pineda:
It's very painful.
Bethany Weathersby:
And by the way, that's how my first one was, too, but you can have pain medicine safely, and I didn't know that until I was-
Molly Sherwood:
Brittany's like, "Dang it, really?"
Brittany Pineda:
And I had it twice.
Bethany Weathersby:
Right. I know, and and it's a game-changer, let me tell you. But for anyone having that, ask for the pain meds, there are some that you can have that are safe for the baby.
Brittany Pineda:
Definitely, because I would not recommend it on my worst enemy.
Bethany Weathersby:
Right.
Molly Sherwood:
Wow.
Bethany Weathersby:
Wait, why'd you have it twice?
Brittany Pineda:
I had plasmapheresis Monday, Wednesday, and Friday, that's the standard care, and then I had IVIG double that Friday and Monday at 10 weeks. And then when they tested my antibodies again the following Monday, it was back up to 2,048, and so this is why they met a second time also, is at that point, the apheresis doctor said, "I don't know, I've never studied this, but I'm pretty sure the doctor wants it to be lower than..." I think it got down to 1,024, but it rebounded immediately, and so basically he said, thankfully, I think this was the importance of having a team of specialists who specialize in what they do, he was like, "This isn't enough to get the amount of antibodies out of your body we need to, or I think we need to, because your body replenishes it too quickly, essentially." He actually reached out to Dr. Moise and told him, and that's the meeting I wasn't in, and so basically, they decided to do plasmapheresis again. Well, I had already taken the port out.
Bethany Weathersby:
You had already taken the port out?
Brittany Pineda:
Yes.
Bethany Weathersby:
That's terrible.
Brittany Pineda:
And so I had to go back and do it again, and the second time hurt way worse than the first. When they got it in there, it sat on a nerve, so it felt like I had, I don't know if it's a heart attack, I've never had one, but it felt painful in my chest. When I went back to IR, they were like, "Well, we could remove it and do it..." I was like, "Oh no, I will keep it for a week. It's only a week. I can make it five days." We decided to do plasmapheresis again, but we did it every single day, and then we removed double the volume of my body weight, so they increased the amount they pulled out, just because my titer, it wouldn't go down. It was just replenishing too quickly.
Molly Sherwood:
And so then, it did go down one titration after that, just for a little bit?
Brittany Pineda:
No, it went down further. I think it went down to 256. It went down a lot for those five days, and then I had IVIG Monday and Tuesday. It didn't rebound again into the thousands, I think it was like a week or two later, because the IVIG, we think, was working, and so that was at 12 weeks that that happened.
Molly Sherwood:
And then all they could really do by then is just kind of initiate your MCA scans after that, right?
Brittany Pineda:
Yes.
Molly Sherwood:
So were those really early?
Brittany Pineda:
Yeah, they were. Yes. I was getting IVIG weekly, and I was on week three of my IVIG, my second round, and I think I had texted Dr. Moise and I said, "I don't..." I had really severe headaches, and he had given me [inaudible 00:34:08] and I just didn't feel well. I didn't feel bad, though, after IVIG. I think Bethany had it worse than me, I'll say, and some other moms, they genuinely felt sick. I just had severe headaches. I remember, I don't know if I told Bethany, she said, "Text Dr. Moise." I'm like, "I'm not going to text him, it's a Sunday," or something like that, and I was like, "Okay, let me text him." And so I texted and I was like, "Hey, I don't feel well. This headache won't go away," and so then on Monday he actually contacted the apheresis clinic where I got the IVIG, and he basically wrote a new protocol.
He wanted me to get a bag of fluids before, a bag of fluids after. He thought maybe I was dehydrated. It was within a day or two of me originally texting him. He called me, "You know, I've been thinking, and I think I want you to drive to Houston," and I'm like, "Oh, okay." What you're saying the way you feel and the IVIG, I think we need to get an MCA scan, and I don't think it's anything. I think we're going to scan you and you're going to turn right back around. Don't be worried. And I'm like, "Do I skip my IVIG this week or do I not?" Yeah, he called me on a Sunday. He's like, "No, go tomorrow, get your IVIG," and I'm like, "Okay."
And so they did the different protocol with the fluids and I felt better, and I was like, "Oh, I don't have to go," and he's like, "No, I still want you to come. I just have a feeling you need to come to Houston." I'm like, "Okay." I remember texting Bethany, I'm like, "Oh, I get to go see him a lot earlier than I thought," and I remember we were talking back and forth and we were like, "You're not going to need an IUT this early. There's no way. You're just getting an MCA scan. He wants to start early," and lo and behold, Micah decided to be Micah. When I got to Houston, we drove straight in, I went and got scanned, and he was way over what he should be for an MCA scan. I think it was 36 at 15 weeks, was his PSV.
Molly Sherwood:
So what would that MoM be? Do you guys remember?
Brittany Pineda:
I think it was like a 1.7, 1.8. He was very high.
Bethany Weathersby:
He was well over a 1.5.
Brittany Pineda:
Bethany, you want to check?
Molly Sherwood:
Yeah, yeah.
Brittany Pineda:
Because I remember Dr. Moise saying, "Well, it could be a false positive, but..." And they kept checking and checking, and they scanned me for a good 30 minutes just to make sure, and he was, I'd have to go back and look at my texts, but I'm pretty sure every single scan was between 33 and 36. It was dead-
Bethany Weathersby:
It was very consistently well over 1.5. That was terrifying.
Molly Sherwood:
So, did he just say, "Okay, it's time," and I guess you were shocked, probably?
Brittany Pineda:
He did. He said, "This many scans between this range, this is a very tight range." He actually did the MCA scan himself, and I'll say, I felt like peace from the second I walked in, I didn't feel like, "Oh, it's a UTI." Everything felt like they knew what they were doing. He actually told me, he's like, "Look, this is the earliest I've ever had to do a transfusion, but I think you need it. I think these ranges are high above consistent with your previous pregnancies. The more pregnancies you have, typically, the earlier they do become affected." And I was like, "Oh, okay."
And he's like, "It's the earliest one, but the cord is very small. All I can do is do an IPT." The reason he wanted to do it was he said, "These could be a false positive, however I don't feel it is, and if we wait and he gets fluid around him, I don't think I can save him." And I remember my husband, Carlos, was like, "I don't want to do it. I don't want to do it." I'm like, "We're going to do it," and he's like, "No." I was like, "Look," I was like, "If he can't save him, no one can," and I hate to put it that way. I'm like, "We're going to go forth with it." It didn't seem real, and then I think I text Bethany, "Oh, I am having an IVT."
Bethany Weathersby:
Oh my gosh. That was just the worst, because there's all this fear just automatically because of what happened with Christian. He had one IUT, he wasn't nearly this early, and then we see what happened. And so now, here's Micah at 15 weeks needing an IUT, and it's just really hard to accept that information.
Brittany Pineda:
It was hard. It was, just because you don't think you're going to need any intervention that early. I think I was so emotionally disconnected, honestly, the realization of I was going into a procedure that could kill him, that killed his brother, that wasn't a thought I was having. It was, we're catching it early. I know I'm in the best hands I can possibly be in. I think everything, just the way he handles himself and his, I would say, confidence in knowing what to do with this disease, I was just at peace. I didn't think about, oh, something could happen, because after you've lost a child to an IUT and then you have another one, it's emotionally hard, but I think those first few ones, I didn't have that thought process, and it wasn't until later that I started to feel like that. You're estimating how much the baby weighs, and I can't remember if he was six ounces and we put four CCs of blood-
Bethany Weathersby:
I remember, he was six ounces, because I'm like-
Brittany Pineda:
Then, four CCs of blood.
Bethany Weathersby:
... he's about to do a blood transfusion on a six-ounce baby.
Molly Sherwood:
I cannot fathom. I just can't. I can't. Oh my gosh.
Brittany Pineda:
And in actuality, it was like under a minute.
Bethany Weathersby:
Oh my gosh.
Brittany Pineda:
It's still a surreal feeling, and so they do things a lot differently. It's like explaining I didn't get a spinal tap, and so that was new. I actually got to move in the OR bed myself, and just hearing them talk. Knowing Dr. Moise was in the OR was comfortable, but I think even, I loved his ultrasound tech, Genevieve, hearing her voice, because you can't see, but hearing her voice, and they're using the ultrasound wand to guide the needle, and it's really surreal hearing the conversation. It was quick in and out and that was it, and he's like, "We're done." I was like, "Wait, what?"
Bethany Weathersby:
Because the amount of blood that they're giving that baby is so tiny.
Molly Sherwood:
Yeah. It's totally just like a droplet. Wow.
Brittany Pineda:
And so I went the next morning for my ultrasound, they check 24 hours later to make sure the baby survived, and he did. And honestly, it was crazy, because I feel like while Bethany couldn't eat, I could eat. I found this amazing Mexican restaurant, and I ate it every night before. Every single night we went to Texas, I ate it. And then on the way, after he got the blood, even though it was four CCs, that's like a drop of water, literally, it feels like, I could feel him moving the next day driving home.
Bethany Weathersby:
Oh my gosh.
Brittany Pineda:
And it was crazy, because you don't think... I still think I was in denial, like, "Oh, I'm just going to Houston meet Dr. Moise," I'm all excited, and then I was like, "Oh, Bethany, I'm going to actually have an IUT, an IPT, and this is really happening." But on the way home feeling him move more, it was like, okay, this is my reassurance. Dr. Moise was right. He needed blood, he was sick, or he wasn't as happy as he should have been. And so then I went back, I went nine times.
Bethany Weathersby:
So those are all the IUTs?
Molly Sherwood:
That's so many.
Brittany Pineda:
The 20- or 22-week one, that was the scariest one.
Bethany Weathersby:
Tell us about that. Why is that?
Brittany Pineda:
Well, Micah liked to cause issues for Dr. Moise on every transfusion he did, every single one of them. He threw a blood clot during the transfusion. Basically, they stuck the needle in the umbilical cord and they were transfusing the blood, everything was going fine, and then all of a sudden, his heart rate just completely dropped and was nonexistent. I remember hearing Dr. Moise saying, "Prep her for a vertical C-section," and I was still all happy because he could survive. I didn't understand the magnitude of what was going on, but there was chaos in the OR. It was kind of like that subconscious feeling, and I was just like, oh, happy.
Bethany Weathersby:
Hitting the drugs he was giving you.
Brittany Pineda:
Yes.
Bethany Weathersby:
He used good drugs.
Brittany Pineda:
Yes. He used to have to give me liquid Phenergan because at one transfusion, I sat up in the middle of it to throw up, and he was getting ready to stick the needle in and he, "What are you doing?" I'm like, "I have to throw up. It's important."
Molly Sherwood:
You're like, "This is something I need to do."
Brittany Pineda:
He was like, "Never again," so he gave me this cocktail of stuff before, so it probably was the drugs. His heart rate, it was tachycardia-bradycardia, so he was dropping low, going extremely high, and they couldn't regulate it. And at one point, they couldn't find it, and so I remember them calling for the drugs to inject into him and my stomach to get his heart rate back, and then they got it back. I don't think they ended up giving it to me. His heart rate just wouldn't stabilize, and so they were prepping me for a vertical section because he was so little. I stayed in the OR a long time, a long time.
And then, I'll never forget, I came out and I had already had my first steroid shot when I got to Houston the day before for pre-op, for blood work, and I came out, they put me in the room and they gave me my second steroid shot, and then they gave me a bolus of magnesium. Dr. Moise and them came in, and he was probably as white as Carolyn was born. He had no blood in his face. He looked stressed, him and the other MFM, and I'm like, "Is everything okay?" And he's like, "Well, this is the severity of it. We got his heart rate to stabilize in the OR, which is why you're in the labor and delivery room, but we're going to keep you overnight to monitor you." I was like, "How common is this that that happens?" And he said it's only the second time it's ever happened to him.
Bethany Weathersby:
Oh my gosh.
Brittany Pineda:
I'm like, "Oh, so if you've done this many, this is kind of rare," and so I was like, "Well, he likes to keep you on your toes." He genuinely looked worried. I would say I still was at peace, probably from the medicine, and he's like, "We have to monitor you. At any point we feel something's off, we'll deliver," he's like, "But I think we're past the dangerous part," because that's why I was in the OR so long. I remember, I think Bethany had texted me, a few other iso moms had texted, and I was still in the OR out of it, because it took forever. Thankfully, everything worked out. I stayed pregnant and he stayed in me, and he was fine overnight.
It was crazy, though, my body, I think was trying to deliver, too, because I remember I texted Bethany, I was leaking breast milk, I'm like, "I'm only 25 weeks. This is crazy." They gave me the magnesium to help with brain bleeds, they told me. That is the worst thing ever, for anyone that's had to have it, and they gave a bolus, so it was quick, and so that way, in case they had to deliver immediately, at least they could try and protect his brain as much as they could. But I think with all of it, I would say I still wasn't scared. I wasn't thinking, oh, he's going to die like his brother did.
I think I was at peace because he was old enough to survive, but I think it was also just, even the neonatologist who came in to speak to me, everyone knew what they needed to do and were ready to do it in the drop of a dime, like they made sure the OR was open to make if I had to be wheeled over there. He recovered from that blood clot and eventually stabilized, and the next day, we did the scan. He was happy-go-lucky in there, and then we got to go home. And then we wound up having to come back at 27 weeks. Typically, with IUTs, you can make it three weeks. Micah only made it twice, with a three-week interval between it, so we kind of lived between New Orleans and Houston for a while.
Molly Sherwood:
I will say, the three-week thing I think is actually a Dr. Moise's specialty, because I think he sometimes couples up, doesn't he couple up the IVTs and the IPTs, but some other moms do end up having their IUTs every two weeks, right?
Bethany Weathersby:
Yeah.
Molly Sherwood:
Just saying that, so other moms aren't like, "Okay, three weeks, good to go," set my timer.
Brittany Pineda:
Well, and with Micah, so we actually stopped doing the IPTs, the blood in the belly, because we gave blood so early, and their skin is very thin at that point, he wound up having a, we don't know if it was a bruise/bleed, but the blood in his belly either moved or he bled and had a bruise. I think at 18 and 20 weeks is when we really saw it, but it moved up his body. We didn't know what it was, but that's what we assumed it was, so I think at 20 weeks, we stopped, when he could hit the cord, because I remember him telling me, "I'm going for the cord," and I'm like, "No, you're not. No, not until he's viable," because I was scared, and he's like, "I'm doing it. I can do it," and I'm like, "Okay." We stopped doing IPTs at that point, only because he had already had this blood or free fluid, we didn't know what it was, from getting them so early, and so he mostly at that point, after 20 weeks, had IUTs.
Molly Sherwood:
What was delivery like for him, and then those days after delivery?
Bethany Weathersby:
Wait, tell us one more time, how many IUTs total did he need?
Brittany Pineda:
Nine.
Molly Sherwood:
Bonkers.
Brittany Pineda:
From 15 weeks to 32 weeks was his last one.
Bethany Weathersby:
That is a lot.
Molly Sherwood:
Wow. And that's just until 32 weeks?
Brittany Pineda:
Yes.
Bethany Weathersby:
Oh my gosh.
Molly Sherwood:
That's crazy.
Brittany Pineda:
Because Dr. Moise gave me my PhD of motherhood award on IUTs.
Bethany Weathersby:
He actually printed out an award for her.
Molly Sherwood:
Really?
Bethany Weathersby:
Yeah.
Brittany Pineda:
He did.
Molly Sherwood:
Oh my gosh. That's amazing. I hope you keep that forever.
Brittany Pineda:
I do. I have it with all of his stuff. Basically, we went back and forth about... At that point, at 30 weeks, I met with the head neonatologist at where he was born, the Level IV NICU, and he told me, "If you were my wife, I'd deliver you now. I wouldn't go back to Houston. I wouldn't listen to them. I can take care of this baby." I called Dr. Moise, obviously, I was like, "Look, you've kept him alive this long. What do you think is best?" He said, "Obviously, you can do what you want. I think you need to come back for the 32-week IUT, and then that can be the last one." I think at that point, I was feeling uneasy. I think the reality of we're so close to the finish line, and why risk him dying like his brother from a procedure when he could survive, I think that was weighing heavy on me.
I was like, "Okay, you saved him at 15 weeks at six ounces. We'll come back for the 32-week IUT." And we had decided, both of us, at that point to get to 35 weeks, as far as he's come, he's safer out than it at that point, and so my last one was at 32 weeks. I would say my biggest regret with him is not delivering in Houston. I kind of went back and forth, do I deliver in New Orleans or Houston, because we knew he'd need a NICU stay at least a few weeks, and so I wound up delivering in New Orleans. The hospital could care for him, but I think, knowing now what I know, I should have delivered in Houston, just because as rare as antibodies are in pregnancy, they're just as rare as when the baby comes out with HDFN.
Since I hadn't ever experienced truly knowing what HDFN was and how to properly care for them once they're born, because with Carolyn, I didn't know, now that I know if I would ever have more, which I cannot, but if I would, then I would deliver in a NICU that is aware and is trained to know what to do for those types of antibodies and how that affects the baby. I was on-
Bethany Weathersby:
Phenobarbital.
Brittany Pineda:
Phenobarbital. I was like, "I know it's a P." I think he started it 10 days prior to delivery, and it was a few days in and I'm like, "Ah, Micah's not moving as much." I was working at a high school at this point, and my daughter had come to a play at our school. I remember, I have a picture, it's my last picture pregnant. I text Dr. Moise. I think Bethany told me, "You should text Dr. Moise," and I was like, "Oh, okay," so I text him, I was like, "Hey, I'm not really feeling Micah move. I'm not sure what to do. I went and got an Icee," and that was Micah's thing, if Micah didn't move, an Icee, he would move for, "Well, he wasn't as active." And he's like, "I don't think he's anemic because there's no way, he had enough blood," and so he was like, "But go to the MFM, and let's see what they say."
When I was pulling in, he called me and he's like, "Look, I'm just going to have your MFM deliver you. There's no point. It's two days from now," I think I was 34 weeks, five days, he's like, "We're going to deliver you." When I walked in, they did an MCA scan there in New Orleans, and they actually told me it was elevated. I was like, "Yeah, I'm pretty sure he's not anemic, but it doesn't matter. We're going to deliver." I was like, "Okay, I don't have a hospital bag packed, so can I go home?" And he's like, "No, you're not leaving." I was like, "No," And he's like, "Brittany, you're not going to come back. I know you. I already am signing you in." And I was like, "No, but I need clothes." I was in my high school t-shirt and maternity jeans. I had nothing. No one was prepared. I'm last minute everything.
I was like, "I swear I will. Can I just move my car, because I parked in the temporary parking spot? I at least need to move to the long-term." And he's like, "You can move your car, and you have 30 minutes to make it back up there to the labor and delivery floor or I'm coming find you." I'm like, "Okay, I promise," because I think he agreed with Dr. Moise like, "Let's just get him out as quick as we can," and so then I was induced for him. I wound up delivering him vaginally in the OR, though, but I was in the OR in case we needed a C-section, because he, at that point, from the blood early on, he had a lot of blood in his belly on the ultrasound and then in his scrotum, and so we were concerned with delivery that it would push the blood onto his heart and it could stop it during delivery.
One of my stipulations, I'm like, "We're going to deliver in the OR, because I don't want to be rushed from labor to OR," so I delivered in the OR with the whole NICU team, literally, in the room with me. And then he came out screaming, and he was white, not, I thought he was going to... When Christian was born, from the IPT, he had bruising on his stomach. Micah looked normal. He was screaming, he was breathing on his own, which was great, and then he went to the NICU. It was probably an hour-and-a-half later, I was like, "I'm going up to see him." They're like, "No, you can't walk." I'm like, "I'm going up to see him." I walked myself up there, and they were still running tests at that point on him, like his bilirubin and cord blood, and waiting on that to come back.
Bethany Weathersby:
And how much did he weigh? Because with the growth restriction of your others, did he have that at all?
Brittany Pineda:
No. He was the biggest. He was fat, for being 34 weeks. I think he was six pounds, one ounce or two ounces.
Molly Sherwood:
Wow, that's pretty hardy for that-
Brittany Pineda:
Yes, 34 weeks. He would have been massive. I'm glad we delivered, early because-
Bethany Weathersby:
He would have been huge.
Molly Sherwood:
You've suffered enough. No need to have to give [inaudible 00:48:28]
Brittany Pineda:
Well, and that is one thing, when you get transfusions, adult blood makes them grow more rapidly, and so he... But I'll say, I splurged on that pregnancy. You know when it's your last one, you eat whatever, so he ate it all.
Bethany Weathersby:
Nice, nice. What did you name him, and tell us why.
Brittany Pineda:
I named him Micah Christian Joseph Pineda. Micah Christian is Christian Michael backwards essentially, and then Joseph is Dr. Moise's his middle name.
Molly Sherwood:
Oh my gosh.
Brittany Pineda:
So, he was named Dr. Moise.
Bethany Weathersby:
I love it.
Molly Sherwood:
Just like Callum, right?
Bethany Weathersby:
Yeah. Callum also has two middle names and one of them is Joseph, after Dr. Moise. It's amazing. He's such an amazing man.
Molly Sherwood:
He probably wouldn't have let you to use Kenny or something. He probably allowed Joseph, but not Kenny.
Bethany Weathersby:
Why would she?
Molly Sherwood:
I've heard his wife tease him about that all the time, just call him Kenny.
Bethany Weathersby:
Because apparently, when he was a little boy, people call him Kenny and he hated it. Tell us about Micah's NICU stay really quick, even though it was not a quick stay.
Brittany Pineda:
He was in there about a month. He had a lot of issues. I would say the opposite of Carolyn, his bilirubin was very elevated, but it was his direct bilirubin, so from all the blood transfusions.
Bethany Weathersby:
What's the difference?
Brittany Pineda:
Direct is water-soluble and it's processed out through urine and stool, and then indirect, or unconjugated bili, they use them interchangeably, is fat-soluble, and that is the one that can actually cross the blood-brain barrier and cause kernicterus, brain damage, when their bilirubin is too high. Carolyn had that one. Micah had a higher direct bili, so we were never, per se, in danger. His bilirubin was in the 20s and 30s. We were never in danger of brain damage, per se, because it was more so just giving his body time to get it out, and it was because of having nine transfusions in utero, so we knew he was safe for that. The biggest thing that he had when we started following up was his ferritin level. When you get that many blood transfusions, with the adult blood, the iron stays deposited, and he was born with, I think it was 2,250 ferritin level. It was-
Molly Sherwood:
What's normal?
Brittany Pineda:
I think under 300 is normal.
Bethany Weathersby:
Yeah. Yes.
Molly Sherwood:
Wow.
Bethany Weathersby:
I do want to clarify really quick, so Micah was receiving treatment for the high bili, right, he was getting around the clock phototherapy?
Brittany Pineda:
Yes, he was. He had triple light therapy, yes.
Bethany Weathersby:
Did he have IVIG, too?
Brittany Pineda:
He had it once, right after he was born, and then it obviously didn't go down, because IVIG does not treat direct bili, it doesn't help it, and so Dr. Moise is actually the person who said there's no no point in doing it. You can do it, it's not going to hurt him, but it's not going to help him, because it only helps indirect bili.
Bethany Weathersby:
Oh yeah. Tell us about the ferritin. He had super high ferritin, or iron, basically, levels when he was born.
Brittany Pineda:
Yes, he did. He had high ferritin, and then they kind of just tracked that in the NICU. I would say in his time in the NICU, that wasn't the main concern. It was more so the high bili. He also got bronze baby syndrome from being on the lights, which is where they turn bronze, but then Micah literally turned like Hulk, but like poop green.
Bethany Weathersby:
Like a bronze statue that's turned brown. Do you know what I mean?
Molly Sherwood:
Oh, like getting a little, what do they call that?
Bethany Weathersby:
Yeah, what is that? There's some word.
Molly Sherwood:
What causes that calcification? I'm picturing it. I can see it.
Brittany Pineda:
I don't want to say he was the ugliest baby in the NICU, because he was adorable-
Molly Sherwood:
Oh, he was so cute. Stop it.
Brittany Pineda:
But he stood out, so all the nurses who didn't have him would come see him, because that they had never seen a baby look like that, and they just had to see him. We called him a little Hulk, and my mom called him Iron Man since he was born, since his iron was high.
Bethany Weathersby:
That's perfect. And he's a superhero.
Molly Sherwood:
Aw, that works, too. Oh my gosh.
Brittany Pineda:
Yes.
Molly Sherwood:
Yes. So many superheroes.
Brittany Pineda:
He stayed that way for a while. He was dark green, dark brown. Eventually, at one point, he actually got sepsis from E. Coli, and so they wound up starting him on antibiotics, and that's actually what kept him in the NICU longer. It wasn't the iso, because that can be tracked once you're in the clear, and the bilirubin wasn't able to affect his brain. It was something that we could just do weekly, blood draws on or twice weekly, but then he got sepsis, and so that's what kept him in the NICU another two weeks. Once he got out, we were discharged to hematology, and we have an amazing hematologist in New Orleans and he got right on his case. They checked him every week for his hemoglobin. He wound up having three post transfusions, four, I guess. He had one in the NICU, and then three after his discharge from the NICU.
And then really, the biggest thing was all you can do is wait until their bodies are able to process this out, but with Micah, he wasn't producing any red blood cells, and they believe it was because he started transfusions at 15 weeks. When you start them in utero, their bone marrow doesn't produce blood, and so it basically stops. Since his was stopped almost his entire life, we wound up doing epigene injections, which is a shot that kickstarts their bone marrow to produce RBCs. It was about two weeks after, maybe, his ferritin level when we checked it jumped up to 16,000, and normal's under 300.
We were concerned that the iron was depositing onto his organs, and so we wound up doing a liver biopsy, and it did show cirrhosis being damaged from the iron. We were given two options. We could wait and let his body process it out, and potentially his organs could be damaged. They said your liver can replenish, but your heart and lungs won't, the cells won't regenerate, or we could do Desferal, which is an iron chelation. And that, I would say, was a team decision also, back to Dr. Moise. Even though I wasn't pregnant and he only treats pregnant patients, I reached out to him because Desferal, it's not practiced on children under two years old. There's no iron chelation that you can use under two, and so-
Molly Sherwood:
Can you explain the iron chelation thing?
Brittany Pineda:
Iron chelation is basically, you get an IV of this medicine, and what it does is it binds the iron. The medicine pulls the iron out of your body, so then as you pee and poop it out, it comes out quicker because it's binding to it, rather than just your body catching the free-floating iron, per se. It gets it out your body more rapidly, because at that point-
Molly Sherwood:
You're great at explaining this stuff. It's like you're a teacher.
Bethany Weathersby:
She is.
Brittany Pineda:
Thank you.
Bethany Weathersby:
She's very smart and well-spoken.
Brittany Pineda:
It was a lot.
Molly Sherwood:
Sorry.
Brittany Pineda:
No, you're fine. We did the Desferal, we decided to go with it, and we basically decided his care plan, like how much medicine do you give, what's the rate, things like that. At the time, there were only three other babies in the world that we knew of that had had to be chelated due to Alloimmunization, and so Dr. Moise reached out to his MFM friend that is in the Netherlands. He's a celebrity, Dr. Moise, seriously.
Bethany Weathersby:
Of course. He knows everyone.
Brittany Pineda:
He knows doctors everywhere. That doctor in the Netherlands had given him the information, the rate they ran for the medication, and so we made a plan based on how old Micah was and how much he weighed, and we essentially ran... I became a nurse, I feel like, much respect to them, but I ran his iron chelation. It was 12 hours a day that we had to run it.
Bethany Weathersby:
And he got a tiny little port, too, didn't he?
Brittany Pineda:
Yes, he did. He has a little port. He still has his little piece under his skin. I told him it's forever and it's because he's a superhero, and so he's proud of it. I ran the medicine 12 hours every night, just because worked best with the girls, in school and being home. It's a little pump, and then you have this huge tubing that you carry around, and so he would sleep in my arm, so he wouldn't get wrapped up in it, because babies move, and so it's awkward to have.
It's really scary because tied into your skin, but it's a port, just like I had when I was pregnant with him, and it goes into your heart, so if it comes out and it doesn't stop depleting, potentially, you could bleed out. It's not a safe thing, per se, but as safe as it can be. We ran the Desferal for, it was almost three months. It was a little over two months, and then we stopped it because his ferritin level had started to decrease. We basically tracked it for the next few weeks, and it was still going down on its own, and so then eventually, he got the port taken out by the surgeon, and then we just tracked him. I would say his care ended when he was well over a year old.
Molly Sherwood:
Wow.
Brittany Pineda:
That's when things started to get back to normal.
Molly Sherwood:
At that time, was everything essentially back to normal, nothing more to monitor, he was just done with that care?
Brittany Pineda:
Well, yes, he's done. He was done with the liver enzymes and stuff, because that's what took the longest to get down to normal, but then we do have to watch him for, because with the Desferal, it's an unknown. It's got a black box warning itself for under two years old, and so with that, it was just being very proactive and monitoring him and different issues he might have. Desferal has the option of stunting their growth, per se, but it can mess with their hormones, and so we just basically track him now. At any point, if he stops growing, then we go to see an endocrinologist. Right now, while he thinks he's going to be 6'4", but Carlos and I are short. He's growing at his own little rate.
Molly Sherwood:
High aspirations.
Brittany Pineda:
Yes, exactly.
Molly Sherwood:
That is the longest HDFN treatment story I've ever heard.
Bethany Weathersby:
It is.
Molly Sherwood:
Wow.
Bethany Weathersby:
And I just want to point out that it's very common for doctors to give HDFN babies iron after birth without checking ferritin levels. It's just very important to make sure that if you do have a baby with HDFN, do not give permission. Well, you can do whatever you want, but a suggestion would be, I don't want to be giving medical advice, but you might want to just say, "Please don't give iron unless we have a ferritin test first, and if the baby's low, then of course, it's safe to move forward with that."
Brittany Pineda:
And I think anybody that has, I don't think it was standard practice, or isn't, I think, because at that point, like when the Coombs test comes back positive and a lot of doctors aren't either aware or know the correct procedure, I think, my personal opinion, anyone that has an IUT or IPT, they should have a ferritin level checked as soon as the baby's born, and a TIBC, which is a total iron binding count, and that accounts for where is the iron free-floating in the baby's body? With Micah, because he was so anemic and so green and we couldn't see his veins, that's part of the reason why he had to get the port. They stuck him one time over 20 times.
Bethany Weathersby:
That's terrible.
Brittany Pineda:
With those two blood tests, they don't have to draw any additional blood, because with Micah, we were literally counting millimeters of CCs, like what we were drawing. We couldn't overdraw, just because he couldn't afford any more transfusions than he already had because of how high his iron was. Those are two tests that can be drawn in the standard CBC vial that they already take, so why not run them?
Bethany Weathersby:
Good advice. Now, I really wish I had done that with August. He had seven IUTs, and they were starting to give him iron even, and we had to stop them. But wow, that is just such an inspirational story, Brittany.
Molly Sherwood:
That truly is an incredible survival story. That's what you said in the beginning, that's what this is.
Bethany Weathersby:
It is. If you could go back in time, all the way back to your first pregnancy, and you could sit down with your OB-GYN and tell her exactly what you're going to need from her in the coming years, what would you say, and I know I didn't give you this question ahead of time so you didn't have time to think about it, I'm sorry, starting out on your pregnancy journey?
Brittany Pineda:
I would say the proper blood work done and monitored, and then also just how to identify when the antibody screen comes back positive, because those in our portal show us two different things, but then also what antibody do I have? Because that makes a huge difference. And I know I'd said get back to it, but I'm looking at his picture, so my cousin, ironically, had anti-K antibodies, Kell, and as much as I knew about anti-D and C, Kell is a different beast, I'll say. It adds that complexity of completely shutting down the bone marrow and preventing them from making new blood. I think knowing when that antibody screen comes back positive, I would have needed, and she, and I think every pregnant woman, is that what do I do with this information that I now have, and then also, who is the best to handle this patient's care? And so not just referring to a maternal fetal medicine, but referring to one that specializes in the antibodies, but even knowing the care plan, because it's critical.
By the time I got pregnant with Micah, I knew I needed plasmapheresis and IVIG, because of how severe my case was, but I knew that, even then, not my OB, and so I think just knowing about that is so powerful. But I think even if I could tell her now, and she's still my OB, I love her, I can look past it, it was an honest mistake missing it multiple times, but I think just knowing what you know now, spreading that information, that's what I need from you, because while it's a survival story, I think I went through everything I did to help other people. She's had patients since then and she's like, "Would you be willing to talk to them?" I'm like, "Absolutely. Absolutely." But she now knows where to refer them to, and so that whole OB-GYN clinic knows, and so I think even me and my story, although I'm one person, now what she knows can change the trajectory of a lot of other women.
Molly Sherwood:
Wow. You set that up, because our next episode this season is going to be our message to OBs, and I think you hit on basically the themes of what that episode is going to be.
Bethany Weathersby:
Absolutely. Well, Brittany, I still wish I could ask you a million more questions, but we have to wrap up. I just want to say again how inspired I've been by you. Thank you for sharing your experience with us, and for using it to educate other families and providers. I often think about Christian and how proud he is of you, I'm sure, and the legacy that you have created for him through your advocacy work.
Brittany Pineda:
Thank you.
Child:
Whether you are a patient, provider, or otherwise affected by antibodies and pregnancy, we are here for you. We have great resources on our website at allohopefoundation.org. That's Allo, spelled A-L-L-O, hopefoundation.org.
Molly Sherwood:
The Allo Podcast is a production of the Allo Hope Foundation. It was researched and written by Bethany Weathersby and me, Molly Sherwood. It is produced and edited by CJ Housh and Eric Hurst of Media Club. The Allo Podcast is sponsored by Janssen Pharmaceutical Companies of Johnson & Johnson.
Bethany Weathersby:
I've got to do this again. So get ready to download the first episode of season two on August 29th. Molly, I'm going to hurt you.
Molly Sherwood:
Sorry.
Bethany Weathersby:
I can't. Okay, okay.
Molly Sherwood:
It's just funny to hear you do it over, it's like-
Bethany Weathersby:
I know. Yeah.