Navigating the American medical system is not new to a clinician like Katie, but experiencing it as a rare disease patient is a different story entirely.
Navigating the American medical system is not new to a clinician like Katie, but experiencing it as a rare disease patient is a different story entirely. This week Bethany and Molly interview Allo Hope Foundation’s Director of Development, Katie Shanahan, a nurse practitioner who became sensitized after not receiving Rh immunoglobulin (RhIG, sometimes called RHOGAM). Her alloimmunization progressed rapidly as her son developed significant HDFN in her first alloimmunized pregnancy. Katie shares stories of IUTs and NICU life in such a relatable and informative way. Also, the women discuss the process of in vitro fertilization and how preimplantation genetic diagnosis can make Katie’s next pregnancy a very different experience.
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Reference
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 are really excited about our podcast today. Excuse me.
Molly Sherwood:
Oh my gosh! We're not ready.
Bethany Weathersby:
Wow. The apple didn't help there.
Molly Sherwood:
Certainly apples help just to lubricate the mouth, but that's what we just learned from our producer. Didn't work.
Bethany Weathersby:
Yeah, so I've been eating apples for breakfast and clearly it had the opposite effect or something.
Anyway, I need to know, before we dive into this amazing episode, Molly, did you find the loose salamander in your house last night?
Molly Sherwood:
Yes, I did. Last night was one of those classic parenting evenings. Actually, it's funny. Now I'm so adapted to parenting that this whole night wasn't really terribly stressful for me because one kid was throwing up and then... That was Hayes. He was throwing up. And then Ronan had caught a salamander when we were camping over the weekend and he had it in this tiny container. And I was like, "Buddy, you got to get it out. It needs some air."
And so anyway, he was trying to get it out and it just kind of flew out and got loose in the house. And so those things are fast and they go in weird directions. They don't go the direction that you're anticipating that they're going to go and-
Bethany Weathersby:
It's like little aliens.
Molly Sherwood:
Yes! They just kind of... It's super, what do they call it, like fast-twitch muscles? And Ronan has a broken arm right now, so he's in a cast trying to shovel the salamander into his broken cast. And anyway, it was just such... Anyway, Hayes is not throwing up anymore and we caught the salamander. So we're ready for our day. We're good.
Bethany Weathersby:
Great! Nice. And the salamander survived.
Molly Sherwood:
Yes, he did.
Bethany Weathersby:
And he is out and living his life in the wilderness, correct?
Molly Sherwood:
Yes, yes. He was released, yes.
Bethany Weathersby:
Nice. That's amazing.
Molly Sherwood:
No animals were harmed on this podcast today.
Bethany Weathersby:
Good. No broken arms were harmed. Oh, does the salamander have a name, by the way?
Molly Sherwood:
No, I don't think he ever named it. Good question.
Bethany Weathersby:
Yeah, I feel like that's a big difference between boys and girls. If that had been my daughter, it would've had an entire background, like family, name, age, all of it.
Molly Sherwood:
That's so true. That's a really good point. Yeah, no, Ronan knows. It's like, "No, this dude is going to die, probably soon. I'm not going to name him." It took him a while to actually name his fish. He has several fish and a frog.
Bethany Weathersby:
Oh, wow. He's really guarded emotionally.
Molly Sherwood:
Yeah, you're right. Yes. A couple weeks in, he was ready to name them because they haven't died yet, so we're good.
Bethany Weathersby:
That's great. I love it.
Okay, so today, shifting gears a little bit, today's going to be really fun because we're chatting with a very good friend of ours. We asked Katie Shanahan to join us for the podcast. She's actually a nurse practitioner herself, but she also serves as our Director of Development at the Foundation. She just joined us a few months ago, but it feels like she's been here forever. She just fit right in and she's already done some really amazing things.
Molly Sherwood:
Yeah, she's done so much already. She's gotten a bunch of donations from organizations to send to other Allo moms. She helped us launch our first-ever Awareness Day, which by the way, is March 12th. And if anyone wants to know why we chose that day, you can go troll us on Instagram. Just putting some good old clickbait in here. And here's some things she just did a couple of weeks ago.
We've been working with a hospital in rural Kenya to try and help create a protocol there to keep HDFN babies alive despite not having access to resources that we have in the US. They don't have IUTs. They badly needed a biliblanket, and those things cost a lot of money. They cost a couple of thousand dollars, and Katie could not let it go. Got a medical supply company to donate a biliblanket to that hospital.
Bethany Weathersby:
Katie is also an Allo-immunized patient herself and a mother.
Molly Sherwood:
Yes!
Bethany Weathersby:
So yeah, don't know how we left that out, but welcome, Katie. We're so excited that you're here.
Katie Shanahan:
Hi, everyone. I'm so excited to be here, but I feel the pressure after that introduction.
Bethany Weathersby:
Oh, no!
Katie Shanahan:
Yeah, so I'm sensitized to Anti D and now big C, and I have one son named Liam who was born in 2021 and was severely affected. And the Allo Hope Foundation was an incredible support to my family throughout my pregnancy, and I'm so grateful to be brought on board, and I think that biliblanket's one of my greatest accomplishments thus far.
Bethany Weathersby:
Yes, yes.
Molly Sherwood:
That was awesome.
Bethany Weathersby:
Love it. So Katie's story is, I feel like I say this about every person we interview, but I feel like it's so rich and has really amazing insights for our listeners. She's going to be sharing about her experience with anti-D and intrauterine blood transfusions, post-birth transfusions, and that whole post-birth journey, and also, thinking through growing a family after a severely affected pregnancy, which is a very common issue for Allo women, just thinking through what comes next.
Molly Sherwood:
Also, I want to kick off by saying that, Katie, you were actually sensitized because you were not given RhoGAM when you were supposed to get it, and that's something that they say in the US "never happens." Well, you're proof that it does sometimes happen. So I know that one of your major passions is the importance of giving RhoGAM on time every time.
Katie Shanahan:
For sure. So I am a missed case of RhoGAM. This is my hill to die on, I keep saying to everyone. I think it happens more than we may think. There was a paper that came out last year about a hospital system and they had 17 missed RhoGAM opportunities. And so if that's just one hospital system, you can imagine how often it's happening elsewhere.
And then there's also this new anti-vax trend where people are starting to become weary of different preventative medications like RhoGAM and are refusing to get it, and it just makes my blood boil because, as you'll hear later on in this, my family was severely affected by this disease and something that could have been prevented. And so people choosing not to do it when they have that option, it's hard for me, but I just hope that this story will help people make a more informed decision about whether or not they're going to receive RhoGAM.
Bethany Weathersby:
A lot of us feel that way, Katie, about people who have the option to prevent this disease and aren't taking advantage of that. And I think a lot of it boils down to they don't really understand what the risks are of the condition. That's just my opinion, but very, very important to get your RhoGAM on time, every time. And in doing so, that actually gives you the opportunity to have a more natural pregnancy and to have a safe pregnancy and grow your family in the way that you want in the future.
So Katie, tell us about how you found out that you had these antibodies. I'm guessing it probably wasn't until later that you found out.
Katie Shanahan:
Yeah, so I actually found out I was sensitized after donating blood. I got a letter in the mail that said, "You have these antibodies and unfortunately, we can no longer accept your blood." And so we kind of just figured it out from there. And we were initially told that our first pregnancy likely wouldn't be affected, so we conceived naturally and found out we were pregnant on March 12, 2021.
Bethany Weathersby:
Aw, I love that you remember the date.
Molly Sherwood:
Oh my gosh. That's also our Awareness Day!
Katie Shanahan:
Which is only coincidence.
Bethany Weathersby:
Oh, right. That's amazing.
Katie Shanahan:
That's why I remember it is because it's our Awareness Day.
Bethany Weathersby:
So I have a quick question. You are a medical professional, and so did you know what it meant when you found out that you had these antibodies? Did you really understand the scope of it all?
Katie Shanahan:
Good question. I definitely did not understand the scope. I had no idea what could happen. Thankfully, I talked to some providers that could give me more information because I had those resources as a medical professional. But no, I had no idea. Honestly, I don't even think I really knew what RhoGAM was until I found out I hadn't gotten it.
It just goes to show a lot of the time when you are pregnant or even when you're just going through normal medical care, you're kind of just going through the system and just hoping the right things are being done and why it's important for you to advocate for the right care for yourself.
Molly Sherwood:
Let's talk about then you knew you were sensitized when you became pregnant. So then what did that look like in the beginning of your pregnancy monitoring for the disease?
Katie Shanahan:
Yeah, so at the start of my pregnancy, we checked titers pretty early. My titers were actually too low to titer. At one point, I think my antibody screen actually even came back negative, and I was incorrectly told, "Oh, this is so exciting. You don't have antibodies anymore." And I was like, "I don't think that can happen." But I just had this false sense of security that since everything was so low, that everything would be fine.
Everything was going great. We had the UNITY test at 11 weeks to confirm fetal antigen status, and it turned out that my baby was positive for the D antigen, which my antibodies would attack. But since my titers were so low, I was like, "Oh, everything's going to be fine." So it was an unfortunate result, but at the same time, I wasn't thinking about it affecting this pregnancy, just more that would likely affect future pregnancies.
Bethany Weathersby:
When did you get your husband tested or did you already know?
Katie Shanahan:
We already knew. We got my husband tested, I think it must've been right before I got pregnant. So we knew he was heterozygous and that we had a 50/50 shot of the pregnancy being affected.
Molly Sherwood:
And just to add on, you said the UNITY test, which we do talk about I think in our prenatal testing episode, but that's a type of cell-free fetal DNA testing which is available in the US for the major antigens, including D, like you, Katie.
Katie Shanahan:
Yeah. So everything was going well until about 13 weeks. I was standing in the kitchen and Alec was with me. I'll never forget this because he was supposed to leave to golf literally five minutes later. My husband's a big golf guy and I just had this sensation that I peed my pants. I just felt this big gush and I was like, "Oh my gosh, is this something that happens when you're pregnant?"
So I went into the bathroom and was bleeding, and we went to the hospital and got an ultrasound very quickly. They were so good to me there, and my baby's heartbeat was beating away on the ultrasound. It was something I will never forget and just something I just had not expected at all. I don't want to cry yet.
Molly Sherwood:
Aw, you can cry.
Katie Shanahan:
It's too early to cry.
Bethany Weathersby:
No, that is so scary, Katie. That is a terrifying experience.
Katie Shanahan:
It was terrifying. It was awful. And I just feel for anyone that has to go through it and then not get the same results on the end. But so we were diagnosed with a subchorionic hemorrhage, which I guess is pretty common in pregnancies, but I had never heard of before. So we just were sent home.
I had a little bit of an issue with how things were managed from my provider at that point, and so actually ended up switching providers after that. Then we started monitoring my titers pretty frequently, and at about 16 weeks, they hit critical at a level of 64, and they thought it was likely due to the bleed. We started weekly MCA scans at that point. This is July now, so late July, I was 1.1, and then the week after that, I went up to 1.3 to 1.5, and there was some early signs of ascites, so they scanned me four days later, which in retrospect, I might've pushed to be scanned sooner, but I was 1.8 and the baby had fetal ascites.
Bethany Weathersby:
And what gestation were you then?
Katie Shanahan:
I was 25 weeks.
Bethany Weathersby:
Okay. So wait, sorry. Going back. What was his MOM when they first saw some ascites?
Katie Shanahan:
It was 1.3 to 1.5. They had taken a couple of scans and they were averaging them, but of course, I had every single number written down that they had.
Bethany Weathersby:
Yeah, yeah. So that's when they first saw a little bit of fluid collecting?
Katie Shanahan:
Yeah. This was a Thursday, and I think they probably thought, tomorrow's too early to scan, we'll wait until Monday. So it was four days later that we got the 1.8.
Bethany Weathersby:
So it sounds like, I'm guessing, from that range, the 1.5 MOMs were the accurate ones if he already had fluid building up?
Katie Shanahan:
Yeah.
Molly Sherwood:
Yeah. This is such a quick escalation of anemia, and I keep thinking about how at one time, your antibody levels were too low to titer. And we see women a lot where the levels are too low to titer, and then sometimes they, or their doctors, are like, "Oh, you're fine then." And they actually don't get their titer checked again. So your story is a perfect example of why continuing to monitor, even with a level that low, is critical.
Katie Shanahan:
Well, at one point too, even my MFM was saying we can do MCA scans every other week, and I just didn't feel comfortable with that. And I just think back to what if we had been following that schedule? I mean, you would hope when the baby's approaching 1.5, they wouldn't wait two weeks to scan. But I think unfortunately in some situations, because of access to care, lack of knowledge, that does happen. And so we might've caught that 1.8 when it was too late.
Molly Sherwood:
So now you're probably leading up to your first IUT. Tell us about that time and how you were feeling getting ready for that.
Katie Shanahan:
Gosh, all my IUTs were terrifying, but that first one, I don't think I've ever been that anxious in my entire life. We were 25 weeks, so I knew we were viable. But also, I work as a pediatric nurse practitioner in a large medical center in Boston, and I knew what a 25-weeker was like, and I was terrified.
We actually, the day I went in for my IUT, had an hour-long conversation with the NICU team about what delivery would look like, and I was really happy they did it, but at the same time, it was just so hard to think about possibly delivering with that. Yeah, I was very, very anxious. I was definitely an anxious patient for sure.
Bethany Weathersby:
I remembered my first IUT with Nora was 24 weeks. And they also said, "Well, she's technically viable. Would you want us to try to save her if she was born or not?" And I said, "Of course." But then they had to go through, "Okay, this is what that would look like." And then just seeing that little bassinet in the corner and the NICU team being there ready, I mean, it's great that they're viable. It is a relief, but it's also terrifying at that gestation to have an IUT.
Katie Shanahan:
I had my first one the next day after that scan. My team actually had me get an epidural with my procedure, which was not fun, and I don't think is the standard of care elsewhere. So that was just an added stressor, but it was done in the operating room and I just remember that people just kept streaming into the OR because they were so interested in watching because they'd never seen the procedure before. And I knew my MFM and the proceduralist that he was working with had done them before. I definitely knew to triage that situation because of Bethany, but the sheer amount of people that were just so excited about the novelty of what was happening was terrifying. It was just so completely terrifying. But it was fine.
So Liam's opening crit with the first transfusion was 17, and then the procedure went well. They were able to get into the vein for the transfusion, and then we were monitored for a bit afterwards, and he did great. And thankfully, we did not have that 25-week delivery.
Bethany Weathersby:
That's very low. That's a low starting hematocrit.
Molly Sherwood:
Yeah. Bethany, will you talk about what's a good crit? What's a normal crit for an IUT and what's a risky hematocrit, I'm saying?
Bethany Weathersby:
So the normal is usually low 40s, wouldn't you say, Katie? I mean, Katie's the medical professional here, actually. So you should be saying it, not me.
Katie Shanahan:
No, go ahead. That's right.
Bethany Weathersby:
And of course, the goal with an IUT is to do the procedure before ascites or hydrops has developed. That's why I was questioning that, that first high scan where they said it was between 1.3 and 1.5. It's sounding like it probably was 1.5, and that was probably the time to initiate that IUT. Of course, no one is perfect, and this is just hindsight, so hindsight is much easier than when you're actually in it.
But usually, if you do that IUT when you see that 1.5 or just over the 1.5, the hematocrit is usually, I don't know, just from what I've seen and experienced with my own kids, like low 20s to mid-20s. So my kids' starting hematocrits were 24, 28, and 25. And that's pretty typical, I think.
Katie Shanahan:
Yeah. And there was even a point when... So I got scanned on a Monday with an MOM of 1.8. They were actually talking about doing a transfusion on Wednesday, and I was like, "I don't know if I agree with this." And I think I didn't understand it from a logistical perspective because I knew they had to prepare the blood and do all these things. And I was telling them I really didn't feel comfortable waiting two days. But that was the plan when I left. And then actually, later that night, my MFM called me and he's like, "I'm going to transfuse you tomorrow. I feel like this needs to be done tomorrow." So he definitely made the right call.
Molly Sherwood:
Oh, thank gosh.
Bethany Weathersby:
But also, that is something to take into account when you're deciding when to initiate the IUT and think about how long will it take for the donor blood to arrive, set up the OR, things like that.
Molly Sherwood:
You know what? We could add, it's probably sprinkled in other show notes, but we could add some literature that shows that outcomes after IUTs are better if you can manage to do them before ascites or hydrops develops.
Bethany Weathersby:
Did you say what his ending hematocrit was?
Katie Shanahan:
They didn't get one.
Bethany Weathersby:
Oh!
Molly Sherwood:
Wah-wah.
Katie Shanahan:
I didn't want to tell you.
Bethany Weathersby:
Uh-oh. Was that they purposely just didn't check, or were they not able to?
Katie Shanahan:
I think, honestly, I can't remember. I know I kept asking for it and for some reason, they could not get it. I don't remember what the reason was though.
Bethany Weathersby:
Ah, okay. Sorry, we're just silent.
Molly Sherwood:
We're just sitting here like, "Okay, what do we do with this?"
Bethany Weathersby:
Well, that just makes it a bit harder to then plan the next IUT because that often is based on that ending hematocrit. Right?
Katie Shanahan:
Yeah. We were just solely going based off of MCA scans.
Molly Sherwood:
Okay. So yeah, what was the spacing of your subsequent IUTs?
Katie Shanahan:
So I pretty much had IUTs every three weeks, so I had three more after that for a total of four throughout my pregnancy. And each procedure, they had me get an epidural, which was awesome.
Bethany Weathersby:
That's more painful than the actual IUT. That's a lot more painful.
Katie Shanahan:
Yeah, if I remember correctly, they were concerned about me moving too much, but they were also giving me other meds through the IV just because I was so anxious. So I don't know. I mean, if I were to go through another affected pregnancy, I likely would pushed to not have an epidural now that I know what it's like, because at one point actually, I got too much medication. This was with my second IUT, and it tanked my blood pressures. So I was recovering in the post-op room and I was like, "I don't feel right," and I don't really speak up ever. And the nurse checked my blood pressure and it was like 56 over 30 or something, and then a bunch of people just ran into the room and it was fine. It ended up being fine, but I just think it's an additional risk that isn't completely necessary.
Molly Sherwood:
You know what's so interesting about listening to moms tell their stories like this is we're so busy worrying about our kid that you're talking about your blood pressure just totally tanking, but it's just a casual side note and you're like, "It was totally fine." It's like, yeah, you come second.
Bethany Weathersby:
Yeah, but the anxiety is all about the baby during, well, at least for me, it's just like, is he okay? Is he okay? Is he okay? And how did that go after that first IUT? Katie, did you feel relieved or did you kind of continue with that anxiety?
Katie Shanahan:
No, my anxiety was really high my whole pregnancy. I feel like it was twofold. I was really informed because I had you counseling me through my pregnancy, but also being a medical provider, it's just this added layer of stress of almost knowing too much. I won't say ignorance is bliss because that's not true, especially with this rare disease, but it was just this added layer of I know all the things that can happen in addition to this, and that just made it that much more stressful.
My last two IUTs because of his positioning, they were not able to get into the vein, and so they had to do an IPT, and that was super scary for some reason to me, I think just because I had gotten used to doing it through the vein. And so having it done a different way was scary. And then after my third one, he wasn't moving a ton, so he got a paralytic with each of my IUTs, and he's very feisty. His personality on the outside is definitely what it was on the inside. He had two injections of the paralytic because he just wouldn't stop moving after the first one.
But after that third IUT... He would usually rebound pretty quickly afterwards, it would take him a little while to start moving again. But the third one, he was not moving as much. And so that was really scary. I mean, we definitely, we were further along in our pregnancy. I think we were 30 weeks, and so I felt a little bit more at ease if we had to deliver, but we stayed for extra monitoring. And so the first one was obviously the most difficult, but with every single one, there was some sort of issue that just caused it to be a little more stressful.
Bethany Weathersby:
Yeah, it's hard. Do you remember the opening hematocrits with all of the IUDs?
Katie Shanahan:
I don't. I wish I had taken more notes and I wish I had documented better during my procedures. I think I was in such fight-or-flight mode that I don't even have, not that you want to remember some of this stuff, but I don't have notes of these numbers. I don't have pictures. Not that I want to take pictures of these events, but I would like to look back and be like, "Oh my gosh, we went through that and we got through this." But I have nothing. I know, Bethany, you have some pictures of going in for procedures and stuff, but I just have nothing. I think I was just in straight survival mode and yeah.
Bethany Weathersby:
Yeah. I didn't in my first alloimmunized pregnancy.
Katie Shanahan:
Yeah, okay. That makes sense.
Bethany Weathersby:
Afterwards, I went in with a different experience and a different perspective. But it is, you are in survival mode.
Molly Sherwood:
So your last transfusion was 33 weeks, right?
Katie Shanahan:
Yep.
Molly Sherwood:
What went into that decision for that to be the last transfusion time?
Katie Shanahan:
So they decided to do the last IUT at 33 weeks, and then they were going to induce me at 36. And I think at that point, he felt like the risk of doing another IUT at 36 weeks outweighed the benefit of going more term, I guess. So 36 weeks is extremely viable. And so I guess he didn't, my MFM didn't want to chance it.
Bethany Weathersby:
So even though the last two were IPT, so they had no opening or ending hematocrit, correct?
Katie Shanahan:
I think they had an opening crit. I just don't know what it was.
Bethany Weathersby:
Oh, okay. That's okay.
Katie Shanahan:
And I don't think there were closing crits anytime, but again, I feel like my memory is a little foggy around the actual procedures.
Bethany Weathersby:
Of course. Yeah, yeah.
Molly Sherwood:
Yeah. I think talking about the delivery decision is important because a lot of times we get patients asking, "Well, should I try to have my doctor do an IUT at 35 weeks so that we can deliver at 37 or 38 weeks or just deliver earlier?" And I feel like this is a perfect example of what we tend to say, which is the decision should be a response to the MFM's skill and comfort, and if he's saying, based on what he's seeing, managing your clinical case that it makes sense to deliver at that time, then it's worth that, than pushing and risking doing something that might not be in the practitioner's comfort zone based on what they've seen so far in the management of the pregnancy.
Katie Shanahan:
Yeah. I also don't think I wanted him out. Even at 33 weeks, I was like, "Is it really worth it?" And in retrospect, I would've waited as long as I possibly could just because he didn't do well, even at 36 weeks. But even at 33 weeks, I'm like, "Are we sure we want to do an IUT? Shouldn't we just deliver?" Because it just seemed a way more controllable situation on the outside than it did on the inside, which now going through it, I realize is not the right answer. But I don't think I would've pushed at that point because I wanted him out. I wanted him in my arms and I knew that he would be safe. Whereas in utero, it just feels like a lot less controllable of a scenario.
Bethany Weathersby:
Yeah. And it does depend on the doctor also. I think the risks associated with IUT, it's variable. It depends on each case. There's not a set, I don't think, there's an exact percentage for every baby in every pregnancy and every situation of this is the risk of an IUT. It's much higher for some and lower for some, and it also can depend on where the placenta is and where the cord insertion is and things like that.
Yeah. So he did make it to 36 weeks, which is amazing.
Katie Shanahan:
He did. And then we were induced, which if anyone's ever had to be induced, knows what a treat that is. I got the Cook Balloon, which if you know what that is, it's the absolute worst.
Bethany Weathersby:
Oh, man.
Molly Sherwood:
Is that where they literally... Yeah. Explain that. Do they really shove a balloon in there and inflate it?
Bethany Weathersby:
Yeah, I never had that. I just had Pitocin.
Katie Shanahan:
Yeah, so they shove a tube. Can I get graphic on this?
Bethany Weathersby:
Yeah, of course.
Molly Sherwood:
Yes!
Bethany Weathersby:
Childbirth is graphic.
Katie Shanahan:
They shove a tube up your cervix, and then this is pre-epidural, and then they inflate a balloon with an absurd amount of saline so that it puts pressure on your cervix and helps you dilate. And it was out of everything I went through in my pregnancy, I think that might have been the worst part.
Bethany Weathersby:
That's terrible. Wow.
Katie Shanahan:
And they had to do it. They had to try and insert it three different times. It was awful because your cervix during pregnancy is already super fryable and sensitive because you're pregnant, but oh my God, it was awful. It was so awful.
Molly Sherwood:
Why did they do that? Was your body just not going for it with the Pitocin?
Katie Shanahan:
No. They tried Cytotec first and then they tried Pitocin, and I just was not dilating, and they were like, "We can do this for however many hours, but this is the end result no matter what, so we should just do it now." It worked.
Molly Sherwood:
So after that, did you get an epidural?
Katie Shanahan:
I did. I got an epidural because I figured I had done my time and already had four so I was getting an epidural for the main event, and I still took forever to dilate. But then at one point, I went from two centimeters or three centimeters to 10 centimeters within an hour.
Molly Sherwood:
Is that what they call, is that a precipitous labor at that point? I don't know what the definition of that is.
Katie Shanahan:
I don't know.
Bethany Weathersby:
Well, I don't know if that happens with being induced.
Molly Sherwood:
Oh, maybe not during an induction. I see.
Bethany Weathersby:
You know what I mean? I don't know if it would be categorized as that.
Molly Sherwood:
Yeah, yeah, yeah. Well, in any case, it sounds like it was crazy!
Katie Shanahan:
It was.
Bethany Weathersby:
But it does sound precipitous.
Katie Shanahan:
I didn't feel it. We were watching Dear Evan Hansen. I don't know.
Molly Sherwood:
What is that?
Bethany Weathersby:
It's a movie.
Katie Shanahan:
It's a musical.
Bethany Weathersby:
Oh, no.
Molly Sherwood:
A musical?
Bethany Weathersby:
Is it not a movie?
Katie Shanahan:
Oh, it's a movie, yeah. It's a musical, but it's like the most depressing movie ever.
Molly Sherwood:
I've never seen it.
Bethany Weathersby:
Oh, is it? Oh my gosh.
Katie Shanahan:
But I remember, so if I can't get too graphic, when I went into the hospital, I was like, "I do not have a birth plan. Nothing has gone to plan. I'm not making a plan, but all I do not want is to be pushing on my hands and knees. I don't want to be bare butt up in the air."
Molly Sherwood:
You just weren't into the cow idea.
Katie Shanahan:
So this was the night, it was the night before Liam was born. It was late the night of the 22nd. I dilated super quickly. I was half-asleep watching Dear Evan Hansen, and the medical team runs in and they're like, "He's having D cells on the monitor. We need to reposition." So I kept going side to side and it wasn't doing anything.
And the nurse was like, "I'm so sorry."
Bethany Weathersby:
Oh no.
Molly Sherwood:
The one thing, the one thing.
Katie Shanahan:
"You're going to have to get on your hands and knees." And I'm like, "Oh my gosh, are you kidding me?"
Bethany Weathersby:
Oh my gosh. With an epidural?
Molly Sherwood:
How did you do that with an epidural?
Katie Shanahan:
I don't know. I don't think they fully give you immobility with epidurals. You still have some mobility because I was able to do it, but it turns out, actually my epidural fell out at a certain point. So I wonder if it just wasn't working, wasn't working at one point.
So he was fine. He ended up being fine with the repositioning, but then my epidural fell out. I don't know if it was out before, but at 10 centimeters so I got to experience what some real labor is like, and they were like, "Oh, do you want to push without it?" And I was like, "No."
Molly Sherwood:
I don't.
Katie Shanahan:
I've had five epidurals at this point. Just stick another one in.
Molly Sherwood:
So you did another one? Oh my gosh.
Katie Shanahan:
Yeah. No, I refused. I was like, "You're putting it in."
Molly Sherwood:
That's awesome. Okay, so you were pushing with epidural in now, epidural number six. Cool. For forever? Were you pushing for a while or what was happening?
Katie Shanahan:
I pushed for three hours and at one point, they started talking about doing a C-section because it had been so long. So then they decided to do a bedside ultrasound, and I guess his head was kinked in a weird position, so they manually went in and turned his head, and then he came out 20 minutes later. He was born October 23rd, early in the morning.
Bethany Weathersby:
Tell us his name and weight and all that good stuff.
Katie Shanahan:
Oh my gosh, I don't even know the weight off the top of my head. I think he was big. He was big for 36 weeks. He was like 5.5 pounds.
Molly Sherwood:
That's great.
Katie Shanahan:
His name is Liam Brady Shanahan.
Bethany Weathersby:
Aw, I love it.
Molly Sherwood:
Aw!
Katie Shanahan:
For all of the non-Massachusetts people, yes, he is partly named after Tom Brady.
Molly Sherwood:
Oh my gosh!
Bethany Weathersby:
Oh my gosh. I had no idea.
Katie Shanahan:
People are shaking their heads.
Molly Sherwood:
That's so funny.
Katie Shanahan:
Which my MFM was a huge Cowboys fan, and he just hated it. At one point, it was actually in the running for first name, but we actually did not name him until he was four or five days old because he had all these masks and tubes on. I was like, "I can't name him until I see him." So we didn't know at the time that that was his name, but that was his name.
And when he was born, I only got to hold him for a minute before they took him away, which was probably one of the hardest things. It's just so unnatural to have your baby taken away from you after you go through that. But he was having some respiratory distress, so they initiated CPAP before they brought him down to the NICU.
Molly Sherwood:
And what happened in those first few hours?
Katie Shanahan:
I forced my husband to go with him. I was like, "I don't care about me, just go." And I went down probably about an hour later. My nurses were mad at me because I was like, "You need to get me down there as soon as possible." I just felt like my entire pregnancy, I was like, "If I can get through this pregnancy, if I can get through this experience that I'm not used to as a nurse, once he's born, it's just going to be so much easier." I just thought it was going to be so much easier.
And then when I went down to that NICU and I saw my baby with all of those lines and those tubes and under the blue lights, it's just so different when it's your own child. And in that moment, it just... Everything changed. The NICU was not the easiest part. It was the hardest part. I had a complete meltdown after going to the NICU the first time because I really felt like once I got through the pregnancy that this was going to be better and it was just so hard.
So we ended up spending a total of 10 days in the NICU, and that first day after he was born, he was the most medically fragile, so he was on CPAP. His bili at birth was in the mid-five range, and then over the course of the day, it just kept climbing. So he was on three overhead bili lights, and then he had the biliblanket underneath him, and they gave him IVIG. And throughout that day, they were talking about potentially needing to do an exchange transfusion because of how fast his bili was rising, and that was really terrifying to me.
He started trending up after that, and then I pushed for another dose of IVIG. I was like, "What's it going to hurt?" They weren't super excited to do it, but I pushed for it. They gave another dose, and then the next day, his bili finally started going down and was around 10 that day.
Molly Sherwood:
Yeah. So you did kind of narrowly miss that. And we do, avoiding exchange is something that I know we all push for in terms of management. I know it's not always preventable, but in many times with just aggressive treatment like that, you can get out of needing to do that because it comes with risk of infection that you hope to avoid if you can.
Katie Shanahan:
Yeah, I was super happy not to have to do it, especially because almost like the novelty in the OR, the physician, the neonatologist that was there was like, "I haven't done one of these in forever." And I'm like, "Why are you telling me this?" I didn't want to know.
Bethany Weathersby:
Oh my goodness. Oh my gosh.
Katie Shanahan:
I don't need you to give me a false sense of security, but don't tell me that. So I'm really happy that we avoided that situation.
Bethany Weathersby:
Yeah. Can I ask you really quick about the difference between the prenatal period and the NICU period? Because I think that's interesting that it was harder, it was the worst part for you, but did you feel like he was safer in the NICU than in you?
Katie Shanahan:
I definitely felt like he was safer, but I think when you're pregnant, you know you're pregnant and you've been working so hard to bring a baby into the world, but it's like this hypothetical being that you haven't met yet, and then when you can't see them-
Bethany Weathersby:
Yeah, you can't see. You can't see what's happening, right.
Katie Shanahan:
I mean, you see the ultrasound pictures and stuff, but then when they're born and it's an actual baby and you're like, "That's my baby," I don't know. It was just... And I take care of sick babies all the time, but it's just different when it's your own kid. And I knew he was safe. I definitely knew he was safe and that he would be okay, but I was also trying to heal myself. Being in the NICU after giving birth is just not natural. I would go up to the postpartum unit and I would see all these moms rooming in with their babies and... I don't want to cry.
Molly Sherwood:
You can cry.
Katie Shanahan:
And didn't get that experience. You didn't get that bonding. I couldn't hold him for a couple of days after he was born. It's just not natural to be away from your baby.
And then even in the NICU, I couldn't stay with him. And so I'm trying to heal myself after going through childbirth and I'm standing over an incubator for like 20, 22 hours a day. I had horrible, horrible swelling from the Pitocin. I don't know if you guys experienced that, but oh my gosh, my feet and my legs and my ankles were like elephant legs. It was ridiculous, but it's just not natural to be taken away from your baby. And so that was really hard. And then of course, you have all the hormones after giving birth and all of that combined was what made that period harder.
Bethany Weathersby:
I agree. I think during pregnancy, it's about survival and just focusing on that end goal of getting them here alive. And that takes a whole lot of work for some of us, right, Katie? So then they're here and it is more controlled and you feel like okay, they made it, they're safe, but then it's this wave of, "I need him with me. I need my baby with me," and then you're seeing all the tubes and the interventions. It's like this distance. It feels like a really, even when you're standing next to them, this huge distance between you and your child that should not be there. It almost feels physically painful to not have them on your chest, at least that's how it felt for me. I shouldn't speak for all women.
Katie Shanahan:
No, it definitely did. And then to walk back upstairs to your room and see these women holding their babies and stuff, it's just good for them, but why is this happening to me?
Bethany Weathersby:
Right. That is so hard. And hearing the babies cry, hearing just normal life after birth.
Katie Shanahan:
And celebrations. I mean, this was post-COVID, so people were coming in with gifts and family members, and it just obviously was not our experience, and there's a lot of grief that I have surrounding losing that "normal" pregnancy experience, but it wasn't until that point that I realized this is not what's supposed to happen. This is not normal.
Bethany Weathersby:
Especially with your first, you never got to have that experience. That's really heavy.
Molly Sherwood:
So I'm curious because we keep seeing... I know giving iron to NICU babies is super common, almost as a common practice, just do it. So did that happen to you guys and were you able to talk to the doctors about that decision?
Katie Shanahan:
Yeah. They kept pushing to give iron. It was like their standard. He's getting breast milk. He got donor breast milk until my milk came in. They were like, "We always start vitamin D and we start iron," and they kept bringing it up and trying to do it. I think I even posted in the group, in the support group, and was like, "They keep trying to give him iron. I know we're not supposed to do this. Am I crazy?" They were really, really pushing for it. People were like, "Absolutely not." So I said, "You cannot give him iron unless you check a ferritin level."
The neonatologist that was on with him, with Liam was just, I don't think he wanted to be challenged by a parent, but I certainly don't think he wanted to be challenged by a nurse.
Bethany Weathersby:
Right, that's a whole new dynamic.
Molly Sherwood:
That certainly is a dynamic, yeah.
Katie Shanahan:
So it was a double-edged sword for me, but I was that parent that was like, they would be rounding and I'd be right out there in the middle of rounds questioning them about every little thing. And I don't think they liked that, although that was entirely my right.
So I made them get hematology involved, and hematology was like, "We could give iron, but he probably doesn't need it." I'm like, "No, he definitely does not need iron. He had four IUTs." The end result was we did not give iron. And still, even I think four months after he was born, I had his pediatrician check an iron level when he was already getting labs and it was still like 600 or something. He does not need iron. Yeah.
Molly Sherwood:
Yeah. Because they're getting adult donor blood, which is way more iron-rich than just normal baby blood, so no need.
Bethany Weathersby:
So they never did a ferritin test. Were they hesitant to do that for some reason?
Katie Shanahan:
They said something about it being inaccurate and that wouldn't change the care. I was like, "Well, if we're not going to give it anyways, then there's no point in checking it."
Molly Sherwood:
Okay. So you are heading toward discharge. What was it like when he was discharged? How did it feel? Was it a true celebration or was it kind weird to be out?
Katie Shanahan:
I say the day that we got discharged was the second-best day of my life behind Liam being born. It felt so unnatural to have him taken away from me. And so going home where I could just hold him anytime I wanted or be with him at all times just felt like that was our celebration. So I loved being discharged and being out of the hospital and being able to heal at home and do all the normal stuff.
But it was also uneasiness as well because we knew we weren't in the clear yet. He did have to have a transfusion before he went home, and so we knew that there were likely more transfusions in our future. So we had weekly labs after we got discharged, and he needed an additional three blood transfusions and then several rounds of EPO.
Molly Sherwood:
Will you explain the EPO?
Katie Shanahan:
Yeah. EPO is a medication that they give to stimulate their bone marrow to make more red blood cells. And so I think he got pretty reliant on the blood transfusions. He just would not rebound. His crits would never... I mean, they would go up after the transfusions, but then they would quickly start down-trending again and so I pushed for them to look into EPO. And only after those, I can't remember if he got two or three rounds, did he finally start to have up-trending hematocrits, and then he was medically cleared at about five months of life.
Bethany Weathersby:
So do you remember any of his retic?
Katie Shanahan:
His retic was always really, really low.
Bethany Weathersby:
Right. And the retic shows if the baby is making his own blood basically.
Katie Shanahan:
Yeah, yeah. And he was never, after the blood transfusions, he was never reticing, which is why I think he was pretty reliant on those transfusions. Yeah.
Bethany Weathersby:
Do you remember how low they were letting him drop before transfusing?
Katie Shanahan:
His first transfusion in the NICU, his hematocrit was 27, and they transfused him. And I kind of wish we had waited a little bit, but the NICU doctor was like, "This is what I would do for my child," and I trusted this NICU doctor. It was a different one than the iron, but his other three transfusions, they let him get a little bit lower. I would say we would transfuse around 23ish.
Bethany Weathersby:
That's more typical.
Molly Sherwood:
Yeah, Bethany, will you explain more about why it seems like you're leaning towards letting the baby drop a little bit, and there's a reason for that?
Bethany Weathersby:
Right. So when the baby has had multiple transfusions like Liam did, that basically signals to their body that the blood is coming from an outside source and his body, his bone marrow, does not have to keep producing its own blood, so it kind of shuts down. And that's what they're looking with the reticulocyte count, they see how many new red blood cells are being made. And so Liam was barely making any, if any, and donor blood dies off after a certain amount of time and the baby's growing, so the baby needs more blood also.
All of these factors come together to create that delayed onset hemolytic anemia, and the baby starts becoming anemic. The way to trigger that bone marrow in his body to say, "Hey, wake up. Wake up. You need to start producing some red blood cells," is to let him become anemic enough where his body's like, "Uh-oh, that outside source can't be trusted. I got to start making this myself."
And so, yeah, you see how I'm making the bone marrow a person, I'm such a kindergarten teacher.
Molly Sherwood:
[inaudible]
Bethany Weathersby:
I'm a kindergarten teacher at heart. I'm sorry.
Katie Shanahan:
You totally are.
Molly Sherwood:
It's good.
Bethany Weathersby:
But if you don't let the hematocrit drop low enough to trigger that response kind of, then the baby can become dependent on blood transfusions, and it's hard. It's a really hard balance because you don't want the baby to become too anemic, obviously.
And so Katie, did they say when he was getting anemic, did they say, "Okay, watch for these signs and tell us if he's having any symptoms"?
Katie Shanahan:
No, but I think it's because they knew I knew what to look for.
Bethany Weathersby:
Oh, right, right. Okay.
Katie Shanahan:
So I used, this is a shout-out to Owlet, but I used an Owlet monitor that my friend had borrowed me after her daughter had used it, and I could tell he was getting anemic because his heart rate trends would always be higher.
Molly Sherwood:
Wow!
Bethany Weathersby:
That's so interesting. Wow.
Katie Shanahan:
It's not a medical device, but I was monitoring it as a nurse and knew that he was getting anemic because his heart rates would always be higher.
Bethany Weathersby:
And is that because there's not enough red blood cells to carry the oxygen to the major organs, so the heart pumps faster to get that oxygen to the organ?
Katie Shanahan:
Yeah, it's just working harder. Yep.
Bethany Weathersby:
That's so interesting.
Molly Sherwood:
That's so cool. Oh, man, I did not think of that.
Bethany Weathersby:
So you were really on top of it. I mean, you were-
Katie Shanahan:
Yeah, I don't think the Owlet is meant to be utilized that way.
Bethany Weathersby:
Right, of course. But you knew, yeah.
Katie Shanahan:
Yeah. No, I knew and he would definitely get paler. I feel like he would get a little more sleepier.
Molly Sherwood:
How often were you going in for blood draws to check on him after he was discharged?
Katie Shanahan:
Too much. I mean, not too much. We were going in the recommended amount, but it was every week, sometimes twice a week if something had clotted or... It was a lot. It was a lot. And it was for a long time. He wasn't cleared until he was about five months old and he was born in October, so it was over the holidays too, which was hard.
Bethany Weathersby:
Yeah. Isn't that just the worst feeling, seeing your baby getting poked with needles and screaming and screaming, and then for them to say, "Oh, that wasn't a good sample," or, "Oh, it dried up before we could test it and we have to do it again"? I remember crying, just weeping and then for so long-
Katie Shanahan:
Yep. And sometimes it was hard for me as a nurse because I'm like, "I just want to do it myself."
Bethany Weathersby:
I know. And you had to do that for five months, he had to get those blood draws. That's really hard.
Katie Shanahan:
Although, I will say, we had his one-year CBC six months ago, and oh man, that was worse.
Bethany Weathersby:
Oh, no. Yeah, they're aware.
Molly Sherwood:
Yeah. He knows too much now!
Katie Shanahan:
Like thank God-
Bethany Weathersby:
They give you the look like, "How could you allow this?"
Molly Sherwood:
Oh, it's the worst look.
Katie Shanahan:
Yeah, and they can fight back. It was, looking back on it, thank God he was so little and probably won't remember it. And now that they're older, it's a lot harder.
Molly Sherwood:
It's the worst look when they're just laying there totally unsuspecting, snuggled up with you. And then there's this moment where they're like, "What did you do? How could you do this?" Ugh, it's the worst.
Bethany Weathersby:
"I trusted you."
Katie Shanahan:
And you're always the bad guy. Right? You're always the one holding them down.
Bethany Weathersby:
Oh, yeah. Ugh. That's hard.
Molly Sherwood:
Okay. I want to talk about, and you've already done a great job of being open about this, but I want to talk more specifically about the way this affected you emotionally. So how do you feel like this affected your motherhood, even beyond his clearance and your relationship with him?
Katie Shanahan:
Yeah, so I mean, I definitely have PTSD from everything we went through that I feel like I'm only now just starting to process. I've dealt with a lot of intrusive thoughts. So waiting for him to get sick again, not ever feeling completely comfortable that something isn't going to happen to him. I'm just always waiting for the ball to drop.
I feel a lot of guilt over being in the situation in the first place. I know it's not my fault. I trusted a medical system and they didn't do right by me, and I ended up in the situation, but I feel a lot of guilt that Liam had to go through all of this and that my husband did as well. It's not a normal first pregnancy experience, but especially for someone that's not medical who hates hospitals, it was, I'm sure, really hard for him, although he was our rock the entire time.
Our leave was so medicalized, we didn't really have time to bond. I mean, we did, but you're running to lab appointments, you're going to blood transfusions that take all day, you're in the hospital, and was actually a huge determining factor in me switching jobs, which I did this past September. So I had worked in a specialty of transplant for 10 years. It was my life passion. I thought I was going to work there for life. And after all of this happened, I just didn't have enough time with him. And so I ended up switching jobs that just have a better work-life balance, but it's just completely changed my priorities with everything.
Bethany Weathersby:
Do you think you would feel the same way about that shift in your priorities if you had had just a typical low-risk pregnancy with him?
Katie Shanahan:
I think so. I always wanted to be a mom. I think it probably would've happened anyways, but I don't think this helped the situation. I think I might've been able to stick it out a little bit longer in my old job if it was a normal pregnancy.
And then I had a lot of grief around losing that normal pregnancy experience and not getting to savor pregnancy. I am in an age where everyone around me is pregnant, and they all, thank God, had very normal pregnancies and we're taking bump pictures and comparing their baby to what fruit or vegetable size and taking maternity pictures, and we completely lost that. So, just grief over that.
But I will say on a positive note, I do think I had perspective from being a nurse before for sure, but this just gave me an entirely new perspective. And milestones and small victories in this house are just so cherished. Just so cherished.
Bethany Weathersby:
They are, yes. It makes them so much sweeter.
Katie Shanahan:
Yeah, for sure. And it's a perspective that I wouldn't want anyone to have to have, but if it's the result of this, then I'll take it.
Molly Sherwood:
I feel like I really enjoy just learning about the way that Allo moms mother, and I'm learning more and more with the more women I meet that I do think that there are some, just because of the common experiences, there are things about the way an Allo mom and other moms who have gone through the fear of losing a child, like a real fear that feels like it really could happen when you look at your child and you know they could easily not be here, it affects your parenting daily.
Katie Shanahan:
It's different, for sure. I definitely think my threshold for things is just so much higher because I do have that perspective like, "I'm just happy you're here. There are so many times that you could have not been here, and I'm just so lucky and grateful that you are." So, not to say he doesn't have his moments.
Molly Sherwood:
He is so stinking cute though. He has the biggest, dark eyes.
Bethany Weathersby:
He is so cute.
Molly Sherwood:
Oh my gosh, he's so cute. And he's a chunk.
Bethany Weathersby:
He's one of the cutest babies I've ever seen in my entire life.
Molly Sherwood:
I love fat babies.
Bethany Weathersby:
Yeah, yeah.
Molly Sherwood:
Yeah, he's so cute.
Katie Shanahan:
I agree with you, but I'm biased.
Bethany Weathersby:
Well, you're right. You're right about how you feel.
Just on that last note, I wanted to say that my husband actually talked a lot about after our first alloimmunized pregnancy, which ended with the death of our daughter, but he often said, and he still says this 10 years later, that it completely shifted for him, and it made it so easy to see what matters and what does not matter. He's like, "It's automatic now. The things that don't matter, don't matter to me." And it's a permanent perspective shift that we both really, really appreciate.
Katie Shanahan:
Yeah. Something my husband and I said to each other the entire pregnancy was, "It could always be worse," and we still say it now to each other. Shit could be totally hitting the fan and we just look at each other and we're like, "It could be worse. It just could be worse."
Bethany Weathersby:
Well, I'm just so happy that it ended with a healthy baby Liam and the cutest baby on the planet, of course. So tell us about Liam now. How old is he and does he have any lasting effects from his battle with HDFN?
Katie Shanahan:
He's 18 months now. He's entering true toddlerhood as you both saw this morning on that video.
Molly Sherwood:
Yes, I love it.
Katie Shanahan:
His favorite word is no.
Molly Sherwood:
Awesome.
Katie Shanahan:
He's awesome though. I mean, he is... Oh my gosh. He loves everything that's not a toy. He loves brooms, vacuums, lawnmowers, remotes, water bottles, anything that I didn't buy him.
Bethany Weathersby:
Well, didn't you buy him a mini-vacuum though?
Katie Shanahan:
Of course I did. We also just bought him a little mini-lawnmower too and he was out mowing with my husband last night.
Bethany Weathersby:
Oh, I love it.
Molly Sherwood:
That's so cute.
Katie Shanahan:
It was so sweet.
Molly Sherwood:
That's so cute.
Katie Shanahan:
He's so smart. He loves books. He can sit and read forever. He does not have any lasting effects from our course. He did have some gross motor delays, so he just started walking a few weeks ago, which is something I'm just so proud of. And every time I see him walking, I just get so emotional. But I think it was just because he was a little bit premature. He was just a little bit behind in the gross motor stuff, but I don't think that was related to his HDFN diagnosis. He's completely healthy.
Bethany Weathersby:
Okay. Katie, this is one thing that I really wanted to ask you about. So you said you always wanted to be a mother, right? And you were hoping for multiple kids. Is that right?
Katie Shanahan:
Yeah, I wanted a whole gaggle.
Bethany Weathersby:
Yeah, a gaggle. So now, your first sensitized pregnancy was severe and needed a lot of intervention. So how are you planning to move forward with your gaggle there? That sounds really bad.
Katie Shanahan:
I like it.
Molly Sherwood:
A menagerie.
Katie Shanahan:
My gaggle will not be a gaggle because my husband is a financial person and doesn't want to pay for a gaggle.
So we have been counseled and are pursuing IVF with PGD for our next pregnancy, which is pre-implantation genetic testing. So couples that pursue IVF outside of this diagnosis sometimes do PGD for testing for chromosomal issues, but it can also be used to test for fetal antigen status. So unfortunately, after this last pregnancy, I'm now also positive for big C, so I have big D and big C, and so the chances of having an unaffected pregnancy are only 25% for me if we were to try naturally, and I just don't have it in my heart to do this again.
We are very lucky for two reasons. My husband is heterozygous for both DNC, so it's an option, and we also live in a state where it's required to be covered by insurance. So we are very lucky that those things are in our favor, but know that that's not an option for everyone. It feels like the easy way out, not to diminish how difficult IVF is, but I don't think I can do it again. And when I have this very clear-cut course to fully prevent it from happening again, it feels like I should at least pursue it.
Bethany Weathersby:
And imagine if you can have that birth and have your baby with you and just be able to have that experience.
Katie Shanahan:
Yeah, I mean that's the hope.
Bethany Weathersby:
And your baby rooms with you, yeah.
Molly Sherwood:
And it's not the easy way out. It's just another path on this. You've already paid your motherhood dues. There's no reason for you to elect to suffer again if you have this opportunity.
Katie Shanahan:
Yeah. It's definitely, I mean, with a rare diagnosis, even in IVF, which is something that's so straightforward these days, I've still had to do a fair bit of advocating for myself because these physicians are definitely not familiar with alloimmunization and HDFN. And so when we were starting the fertility workup process, we had to do it for insurance reasons to get IVF covered, I asked my physician to check an antibody screen because I knew I could develop other antibodies after the pregnancy and after IUTs.
And I got a lot of pushback for this and I had to really push for it, had a completely inappropriate conversation and fallout with who was now my old IVF doctor, and turns out that I was positive for big C, newly positive for big C, and if I hadn't pushed for that, I might've done IVF for no reason. And so it's "the easier way out," but I think you still have to navigate this process differently with being an Allo patient, I guess.
Bethany Weathersby:
Because they're not used to doing these procedures for this reason.
Katie Shanahan:
Exactly.
Bethany Weathersby:
Do you feel like, throughout this whole journey, you had to do a lot of educating?
Katie Shanahan:
Yeah. I mean, so I live in Boston, Massachusetts, which is a medical hub. We are so lucky to live where we live for sure. But even in Boston, there were times when I had to advocate for things differently than what I was being told or advocate for the right care. The NICU and the iron is a perfect example. This antibody test is a perfect example. And yeah, it's constant. It's a constant pressure to feel like you have to be the one that's on top of things when in reality, it really shouldn't have to be you. You should be able to focus on your pregnancy and taking care of yourself, and instead, you're focused on taking on the role of being your own provider. And it's just an added stress.
And thankfully, I have a medical background. I'm savvy enough and I have the resources and I have you, thank God, and the Foundation, but there are people that don't have that background and wouldn't be willing to talk back to a physician or have that inappropriate conversation and push for things. And so I hope at least this episode, I mean all of them probably do this, but just show people how important it is to advocate for yourself and make informed decisions throughout any pregnancy, not even ones that are complicated.
Molly Sherwood:
You've been pursuing PGD for a while now, and I don't think, how close are you to being ready to do this thing?
Katie Shanahan:
We started this process in September of 2022. It's now May of 2023, so it's been eight months, and they're just starting to build the testing for our embryos. So nothing happens fast in IVF is what I'm learning because I have other friends that are going through the process, but this has been especially slow, likely because of all the advocating that has to be done because some people are just not familiar with what's happening.
So we had to go through the entire fertility workup, even though I've naturally conceived, so that insurance would approve all of the testing and the egg retrieval and the IVF cycle. But what has been taking the longest is that they actually have to develop the testing that is done on the embryos to detect fetal antigen status, and they do that with generational testing and samples from myself, my husband and Liam. My husband and I both had to give blood samples and then we had to do a cheek swab for DNA for Liam to build the embryo test. And we had to test Liam because my husband is actually adopted, and so his generation of parents isn't available to develop the testing.
So it's taken forever to say the least. To just even get those pieces sorted, we had to figure out if Liam was positive for the antigens, which we know he's positive for D, and we figured he was positive for C, but he had to get that blood testing. Yeah, it's been quite the process.
Bethany Weathersby:
So all this time, Katie, they've been preparing for the IVF and you said they were making, I guess, the equipment to test the embryos, but there are no embryos yet, right?
Katie Shanahan:
There are no embryos. So we can't actually do egg retrieval until this testing is made because they obviously want to make sure they're not putting you through a procedure if these tests can't be made. I think there was a very small percentage that they're unable to because we don't have two generations of sample. So our situation is a little bit unique, but I think no matter what, there is always a small percentage that they won't be able to develop the probes. That's what they call the tests. And so they will not do egg retrieval until that's done.
Once we submit our samples, which we've already done, it takes about eight to 12 weeks to build the testing and then we can do egg retrieval after that.
Molly Sherwood:
This is coming at a perfect time because our next episode is going to talk about options for growing your family, and we're going to talk about IVF with PGD, so I'm glad that we're getting the opportunity to talk to you with your firsthand experience and you know we're going to be with you while you pursue this. And it's not easy any way you cut it, any way you choose to have another pregnancy, but I'm glad that we can be your support system. And that doesn't just apply to Allo Hope Foundation staff. That also is all Allo moms. So if anyone is looking for support, we are here. We are here.
Katie Shanahan:
Yeah. And you certainly have been there for me already, especially throughout the IVF process for sure.
Bethany Weathersby:
All right. I think that covers it.
Molly Sherwood:
Katie, do you need a nap? Do you have an emotional hangover now?
Katie Shanahan:
No, because we have a meeting in a couple of hours.
Molly Sherwood:
Oh gosh, oh gosh!
Bethany Weathersby:
Oh, no!
Molly Sherwood:
We do have a staff meeting.
Bethany Weathersby:
I know. I'm so tired of sitting in this chair. We can do a standing meeting.
Molly Sherwood:
Yeah, we need to do that at the meeting.
Bethany Weathersby:
Okay, one last question, Katie, and then I will release you to our next meeting. So if you could tell one thing to other alloimmunized moms, what would it be? That's a very general question, but what do you think is some of the most important advice that you want other Allo moms to know?
Katie Shanahan:
Oh, man. I mean, there are so many things.
Bethany Weathersby:
I know, it's hard.
Katie Shanahan:
I think the one, and I think this applies to all moms really, but in particular our community, is to trust your gut. I think a mother's intuition is a very real thing. I think there were many times when something didn't feel right and I asked a question differently or I pushed for something. And I think you know your baby best, no matter how much medical background you have, no matter how much formal training or education or anything, you know your baby best. You are that baby's mom. You were put on earth to be that baby's mom. And I would just say trust your gut. Trust your intuition. It's real.
And I guess advocate for yourself. I mean, I didn't with my missed RhoGAM, and it put me in this situation and I learned from that. And I advocated throughout my pregnancy with the help of you guys and the Foundation and now I have a healthy 18-month-old, and I would just keep asking questions until you understand and just keep advocating for yourself.
Bethany Weathersby:
Good, good advice. And I do want to say that you are such an incredible mom. You are. Your love for Liam is so evident, even before he was born, the way you advocated for him, and just went to great lengths to protect him and get him here safely. And now it's so wonderful to see you mother him and see all of his photos. And yeah, just want to let you know you did an amazing job and we're so glad that you shared your story with us today.
Katie Shanahan:
Thank you for having me. He makes it easy. He's awesome.
Bethany Weathersby:
Oh, he is.
Molly Sherwood:
He's adorable.
Speaker 1:
Whether you are a patient, provider or otherwise affected by antibodies in pregnancy, we are here for you. We have great resources on our website at AlloHopeFoundation.org. That's Allo, spelled A-L-L-O, 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.