Latest / The YMyHealth Podcast | Wellness and Healthcare Insights for Millennials / Alloimmunization Story: Katie Shanahan of Allo Hope Foundation
Transcript
- Melissa Schenkman (00:42) For us as millennials, especially childbearing age millennials, there's a lot to know whether you're at the point that you're planning a pregnancy, you're in a pregnancy, whether you have a friend who's in a pregnancy or a relative. And I think there are just multiple things we want to know as much as possible, but sometimes you don't know what you don't know, let's put it that way, that's out there. And so today we're going to talk about alloimmunization. Also called hemolytic. Help me with hemolytic… Katie Shanahan (01:16) Hemolytic Disease of the Fetus and Newborn. Melissa Schenkman (01:18) Thank you. I'm seeing the acronym. But yeah, hemolytic diseases of the fetus and newborn and dive into what those are and what you need to know about that. And through the eyes of somebody who knows about this firsthand, both professionally and personally, we have Katie Shanahan with us. She is a nurse practitioner and also the director of development for the Al Hope Foundation, which we're going to talk about. an incredible organization helping women in our millennial community very much so. Just kind of wanted to start with you to kind of tell us a little bit about yourself and about your work in the nursing field, which I know you've been doing for a while. Katie Shanahan (01:57) Sure. Yeah. So I work, worked, I should say, as a, I still am a pediatric nurse practitioner, but I primarily practiced for 12 years, actually at Boston Children's Hospital, in transplant. So I started as a bedside nurse. And then once I got my master's in nursing and became a nurse practitioner, I worked as a transplant coordinator and did that forever. was my dream job. And up until two years ago, I spent my career doing that until my own high risk pregnancy. Melissa Schenkman (02:29) Wow. And in your work, you know, everybody knows that the nursing field is very demanding, yet very rewarding to have as a career path. While you were working prior to your first pregnancy, kind of where did your priorities fall in terms of your own health? Because it's always so interesting. There are so many people who are in health care and may not in their own life outside of healthcare be able to make that time to prioritize health. Katie Shanahan (02:58) Yeah, nursing, well, first of all, I'll say that most medical professionals are the worst patients. For sure. Just throwing it out there. But nursing was, it was really difficult to create a good work-life balance. Prior to my son being born, I did have a lot more free time and did a lot of running. I actually got to run the Boston Marathon with my husband, which was really cool. Wow. Be honest. Melissa Schenkman (03:24) Congratulations, I'm a long distance runner so that is like... Katie Shanahan (03:29) Nice. Yeah, it was probably a one and done. It was the most incredible experience of my life. And, but running was a good, it was really a good outlet for me to process some of the really difficult things I saw. And nursing, exercise has always been a really important stress and coping mechanism for me with that background. But otherwise you don't really focus on yourself all that much when you're, when you're in healthcare for sure. Melissa Schenkman (03:55) Absolutely. And as part of that too, I wanted to know if you could define this term, and we were talking about this as we started, this term, alloimmunization. Had you heard about it? And I'm assuming yes, professionally. And what does that mean for those of us kind of in the late public? Katie Shanahan (04:14) Yeah, so I actually hadn't heard about this condition prior to having it myself, as I dealt with mostly pediatrics and it's a pregnancy disease. And it's also very rare. So even pregnant women don't really know much about it. But it's a rare pregnancy condition where the mom creates antibodies. So her immune system is doing what it's supposed to. But unfortunately, it mistakenly can attack her baby, developing baby's red blood cells. destroys them and it can cause anemia. And that resultant disease is called hemolytic disease of the fetus and newborn or HDFN. And if a developing fetus becomes anemic in pregnancy, the only treatment unfortunately is a procedure called an intrauterine blood transfusion where blood is given to the baby through the umbilical vein. Melissa Schenkman (05:04) Wow, so it's so interesting that you even, and of course, obviously we're working in theatrics, but just goes to show that this is not something that is widely or not widely enough out there that people need to be very much aware of and is very serious, as you were mentioning with the transfusions. And how old were you when you became pregnant with your first child? Katie Shanahan (05:29) So my first full term pregnancy, was 32. That's Liam, he's three now. And I actually knew going into my pregnancy, I was alloimmunized. So I had antibodies and I really feel like that contributed to our success. But I actually developed antibodies after not being offered Rh immune globulin when I should have been with a loss. That's a common preventative medication for this type of disease is what caused my alloimmunization. Melissa Schenkman (06:02) Wow. And it's interesting because when you think about the preventative side of things, in addition to not being offered that one of the things, and that's why I was asking, you far as age and kind of health outside of it, I think for a lot of us, we think, okay, well, we need to be a certain age or we need to be doing certain health related things, but they have no, that's what I want everyone to know, no connection between the two is one important thing to know, but it's that RhoGAM injection and having it at the right time that is most important and knowing that you need it as well. For you, kind of, how did you develop it? Were there any signs that kind of something was off for you at first before you even found all this out? Katie Shanahan (06:49) No, there were no signs of, fortunately, it doesn't have any effect on the mom. It's really just the baby that can be affected. And I just found out I was immunized by luck. I donated blood at a medical center in Boston and the director there actually called me to notify me that they had found antibodies in my blood and told me it would have implications on future pregnancies. So I was just really lucky that doesn't happen in a lot of the cases that we… Some women don't know they have antibodies going into their pregnancy and so truly it was just sheer luck that I happened to donate blood and find out. Melissa Schenkman (07:28) That's incredible that that is how it happened. And as far as your care team, what type of care were you offered at the time? Katie Shanahan (07:39) Yeah, when I was first diagnosed, I was offered preconception counseling with a maternal fetal medicine doctor, so maternal fetal medicine (MFM), just to explain the diagnosis and what it would mean. And I also got to establish a relationship with the MFM team so that when I did get pregnant, I could easily start care with them. So I was really grateful for that. Melissa Schenkman (07:59) No, that's absolutely wonderful. And how kind of did your own care team who you were working with during your first pregnancy, how did they talk with you about all immunization? At kind of at what point was it talked about? I'm assuming early on and what type of information resources did you have from them directly? Katie Shanahan (08:18) They did a good job of explaining the disease, but I felt like I really needed more information, especially being in healthcare. I just want everything I can get my hands on. So I feel like I was lucky because I was a nurse and so I had access to resources and connections I otherwise would not have had and was able to do a lot of research on my own using websites like Up To Date and published research articles. But prior to my diagnosis, I had no idea what it was. I actually didn't even know what Rogam was until I didn't receive it. And I think that's pretty common in a lot of pregnancies where women kind of just go along with what they're being told without really understanding, you know, why a certain lab's being drawn or why a medication's being given. And that was definitely my situation until I had a rare disease and realized I needed to advocate for myself. Melissa Schenkman (09:13) That makes complete sense and for you, I know you were mentioning before about transfusions, how was your pregnancy and your delivery impacted, and your child as well, by alloimmunization? Katie Shanahan (08:32) So my course ended up being pretty severe, unfortunately. When I started my pregnancy, my antibody levels, which is something they measure for women that are out immunized, were actually really low and I thought our baby would be totally fine. But at 13 weeks, I had a hemorrhage they call a subchorionic hematoma with a large amount of bleeding. And when you have that amount of bleeding in pregnancy and your blood mixes with the babies, it can cause your antibody levels to become higher. And so unfortunately that happened to us. And so we started more intensive monitoring. So you have to do specialized ultrasounds to look for fetal anemia. And unfortunately at around 25 weeks, he did become anemic. And so I went on to have four intrauterine blood transfusions during my pregnancy. they administer a blood transfusion through my abdomen into this teeny tiny umbilical vein to the baby. It's, mean, medically it's incredible what they can do, but obviously it was very difficult. Yeah. Melissa Schenkman (09:38) Wow. Absolutely. Extremely. Wow. Well, I really appreciate you sharing that with us because I think so many times people will hear about a certain type of condition and they'll only hear the general description but won't really know what all of that could possibly entail. So that's really, really helpful. Katie Shanahan (10:57) We…it's an unfortunate disease and fortunate in that it goes during your pregnancy and then even after the baby's born, they still have issues. So after he was born, he spent about two weeks in the NICU, which was really hard. Like if, I don't know if you've ever had a NICU baby or know people that have been in the NICU, but it just changes you in ways you could never imagine. And then after we went home from the NICU, he still required weekly labs and needed an additional four post-birth transfusions. So we were fortunate in that it's a limited disease. So typically these babies go on to become medically cleared after about 12 to 15 weeks and they don't have any issues after that. That period of time during the pregnancy and immediately postpartum is really, really difficult. Melissa Schenkman (11:47) I can only imagine and like you said to your point to be at this exciting point in your life and deliver a child and then have to watch them be in the queue from friends who know who have had kids in the NICU. It's incredibly taxing. Something else I really wanted to ask you is having to go through having transfusions, the worry about yourself, the worry about your child and the pain. Let's be honest, even for as tough as somebody who's run the a marathon, is no easy feat. I say as a fellow long distance runner, the pain medically of things is a lot to deal with. How did this whole experience impact your mental health? And how does it still? Because once you go through something of this nature, that impact still stays. Katie Shanahan (12:37) Yeah, my mental health was pretty severely impacted. I spent my, you know, entire pregnancy in constant fear I would lose my child. And it just felt like we were in constant fight or flight mode for a year and a half. Definitely had and still have anxiety and PTSD. I've been really shocked recently at instances where triggers will come up and I'm reminded like, yeah, I'm carrying some pretty heavy trauma. I also feel like it took me a really long time to be able to start to process what happened to us. When he was first born, we were really just in survival mode and just making sure he got the medical care that he needed. And then he's medically cleared and you're left like, my gosh, what just happened? And so I, I mean, I crashed and burned pretty badly around the year mark. So I didn't have PPD or PPA when he was born, but when I actually stopped breastfeeding. had some pretty significant postpartum depression. I don't even know if you can call it that at that point, but and I think it was because it just all finally, you know, there was a hormone change with the breastfeeding, but also it all just hit me at once. Like, wow, we really just went through. So tough and this was, you know, this was in addition to going through all the other normal motherhood changes, right? You had a newborn, your relationship changes, you're going back to work. It was just a lot. And I think I'll probably be processing it for the rest of my life. Melissa Schenkman (14:13) Understandably so. Understandably so. Given that you were dealing with so much, were there any particular resources for support that you found and education for all immunization in general that you found helpful? Katie Shanahan (14:32) Yeah. So the Allo Hope Foundation, which is where I actually work now, was a lifeline to me during my pregnancy. So I didn't work there when I was pregnant, but I did find them pretty quickly because it really was the only information and peer to peer support I could find. We have a support group available for all alloimmunized women and I joined that initially. And then for the remainder of my pregnancy, I really relied very heavily on the group, as well as the AHF staff… to just like walk me through my pregnancy. This is what we do every day. And I actually attribute a major reason my son is alive to Bethany, who is the executive director of the foundation and who I think you'll probably hear from in another podcast episode. Yeah. She helped me advocate for specific care for my son, which if I hadn't received, I'm honestly not sure if he would be alive. So… Yeah, that peer to peer support was really helpful during pregnancy because it's so rare. It's just, it's so isolating. You don't know anyone that's gone through it. It truly was like a lifesaver during that time. Julie Woon (15:43) - Commercial for our sponsor (Music) I'd like to take a minute to sponsor. We'd like to take a minute to talk about today's sponsor, Diekman Dysautonomia. 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And I was just curious kind of what that journey was like from going from being a nurse and still a nurse practitioner in the clinic, being a mom who went through alloimmunization personally, experienced the child, and then now becoming the director of development for the Allo Hope Foundation. You know, what was that journey like for you and how did you become involved? mean, obviously you utilize their wonderful resources, but on that. Katie Shanahan (17:09) Yeah. I mean, this experience completely changed my life. I initially had a really tough time going back to work in nursing. I had long shifts and I just felt like I wasn't getting the time with him that I wanted after working so hard to bring him into the world. But I also had a really hard time taking care of patients that were similar in age to my son who were really sick, their transplant patients. And it just hit differently after having a child of my own. And it was also, you know, triggering for me after everything we had been through. I actually left my transplant job, which had been my life, like my dream job, like truly my dream job, and took a slightly less demanding role in nursing research. And then shortly after that role, the Allo Hope team asked me to come on board and it was the best decision I ever made. It was like the fastest and the best decision. I feel like I've found my calling. I'm so deeply and personally invested in this cause because it's what I've been through and the work's been really eye-opening for me. Just realizing how very different our experience could have been. We see a lot of loss, unfortunately, and it's changed my perspective, my gratitude, my parenting. It's really changed everything for me and I'm just really grateful for the work that we get to do. Melissa Schenkman (18:36) I am very grateful for the work that you're doing as well. You know, it only makes sense that when you've been in so many different sides of it, that it would change kind of the way you look at things across the board. really, our hope is just providing such a vital service to women in the millennial generation who are the ones at its core with, you know, a handful obviously of Gen Z as well, who are people who have the potential for experiencing this and need to know about this and it's wonderful that there's this wealth of resources created by this foundation for us to turn to. Kind of your personal and professional experience, if you could talk a little bit about the challenges, know, how women, what they're having to face in this particular area of health. Katie Shanahan (19:27) Yeah, well, so the main thing I said we do at the foundation is patient council. So we really provide individualized support. Unfortunately, we have a lot of women reach out to us after having lost a child to this disease. And then after finding us go on to have healthy living children, which is wonderful. But through these cases, we've really seen the same themes play out over and over again. And what's really the main issue is that it's a rare disease and so clinicians only see a few cases during their career and it leads to significant knowledge gaps which we've unfortunately seen sometimes lead to fetal death. There are experts in this disease, but there's only a couple of them and they're all over the country. And there's a lack of standardized protocols for providers who aren't experts to rely on. I guess one of the biggest issues is that it's a really siloed care process. So the mom is the only constant. She has to navigate through this care continuum of so many different subspecialties. So she sees the OB, MFM, neonatology, hematology, the pediatrician, And she's the only constant coordinating all the care and it can lead to a really high level of burden and psychosocial burden on the mom. Melissa Schenkman (20:48) Sure, no, that makes complete sense. And how would you say our hope is really being a leader in advancing this awareness and education of al-immunization that's so desperately needed? That's wonderful to hear. Katie Shanahan (21:00) Yeah, I really feel like we're helping redefine care for alloimmunization. I don’t want to toot our own horn, but we're doing a lot of incredible work. One of the main things we do is we provide evidence-based resources that we develop in conjunction with our medical advisory board. So, we have a panel of a medical advisory board that gives us input on education resources and the resources are both patient- and provider-facing, so we have both. And patients can bring these to their provider to advocate for themselves and the care that they need during their pregnancy. And like I just said, we don’t have standardized protocols for the treatment of this disease, and we actually just recently were so excited about this..in collaboration with the Thor Network, their a trauma and transfusion organization, we just hosted a consensus guideline conference. So, we met with a 120 experts in the management of trauma, transfusion, alloimmunization, HDFN, to develop and disseminate best practices for the care of our disease and it's going to save so many lives! We are so excited! Melissa Schenkman (22:13) That’s wonderful to hear! Katie Shanahan (22:14) And then we also have a lot of global initiatives. In developing countries, the burden of disease is really, really devastating. And I know we will probably talk about that more in the RhoGAM episode, but we are really trying to help bring better care to countries, especially in Sub-Saharan Africa. And then, patient support and advocacy is a primary driver behind everything that we do at the foundation. So, really our priority, and so, giving patients an outlet for peer-to-peer support, and women that have experienced this firsthand, it’s created a really incredible community of women who lift each other up. It’s wonderful Melissa Schenkman (22:52) I think that's I think really the education and awareness piece and the peer-to-peer support their gold They're the two hardest things to find when it comes to any condition that is very rare But in this case, I think because you're dealing with so many other Factors as you were speaking to before in kind of that whole care continuum during pregnancy It's just those two things are vital alone and I know you all are doing so many different things as you mentioned, so appreciate that. And for somebody who is in the process now, let's say, of planning a pregnancy or they're early into their pregnancy, kind of what are the top things you would recommend to them to do and to learn about? Katie Shanahan (23:38) Yeah, so for any pregnant woman, it's really important to know the results of your first trimester blood type and antibody screen. This is standard blood work that’s done in almost all pregnancies. It should be done in all pregnancies. Typically at your first visit. The reason they do this is that if your Rh negative, meaning you have a negative blood type, for example, O negative, and you don’t already have antibodies for this disease, you need to receive a preventive medication called Rh immunoglobulin or commonly known as RhoGAM during your pregnancy and after birth. That’s probably the most important thing I could say for any pregnant woman. And then just really like knowledge is power, if you are experiencing any condition. You know. Pregnancy itself. Just educating yourself is so important, so you can advocate for the right care. Melissa Schenkman (24:33) Absolutely. And also these things are so complex. There's a lot to learn there. And one thing I really wanted to know, being that you've been in this field, being that you've experienced this personally and now you're working with the foundation for several years, what would you like to see change in women's health when it comes to care for alloimmunization? Katie Shanahan (24:56) I would love to see zero preventable deaths. Most, if not all of the deaths that patients come to us before or after could have been prevented and there’s just very easy ways during this diagnosis in this disease that this preventable loss could be avoided, and we really, really just need to get to a place where these babies have the best chance at survival because they really should be expecting survival with high quality care. I also asked one of my colleagues this question too. I was like how do we narrow down your answer to this, and I really, really like what she said so I wanted to say it here because I think it can also be applicable to most health conditions… and what she said was mutual respect, so having a doctor who respects their patients, will collaborate, listen educate, explain, tell them what tests are being run, what they mean, listen when the patient wants to be an active participant in their treatment plan, I think it would be so amazing in any condition, but especially in this disease. Melissa Schenkman (26:10) I appreciate that very, very much and completely agree with you and your colleague. I think that's something that really lends itself well to this condition, I agree, but also across the board because one of the greatest challenges for us is that age, younger age, and then you put on top of that women and women's health. And we all know all the things that have been going on in women's health lately. And so just bring those two together alone before you get into different specific conditions. I think having that respect is huge and having that education and also really a place to be comfortable, to ask your questions and to get the information that you need. I think it is huge as well. So I greatly appreciate that. We are all trying in our own way, I think to make progress in that area. And I think we will in this episode certainly helps tremendously in doing that. Well, I greatly appreciate you taking the time, Katie, to be with us. Katie Shanahan (27:08) Thank you for having me. This is great. Melissa Schenkman (27:10) You're so welcome. And we will be having another episode very soon, specifically on RhoGAm, the RhoGAM shot and what all of that entails as well. So, but thank you so much. Katie Shanahan (27:22) Thank you.