Why do we have to advocate so hard for adequate care for Maternal Alloimmunization? This disease is so rare, many maternal fetal medicine doctors (MFMs) simply do not treat it often. Finding the right doctor with experience in this disease can change the outcome of your pregnancy experience and the health of your baby.
Why do we have to advocate so hard for adequate care for Maternal Alloimmunization? This disease is so rare, many maternal fetal medicine doctors (MFMs) simply do not treat it often. Finding the right doctor with experience in this disease can change the outcome of your pregnancy experience and the health of your baby.
Episode topics:
Green Flags:
For a full list developed and approved by our Patient and Medical advisory boards, check out AHF’s Excellent Care Checklist: https://allohopefoundation.org/wp-content/uploads/2022/10/Alloimmunization-HDFN-Excellent-Care-Checklist.pdf
Bethany’s questions for Dr. Trevett (*note, this is an example that is relevant specifically to Bethany’s pregnancy. Your questions may be different depending on your disease and access to care):
3. How comfortable are you with the IUT procedure?
4. How many IUTs do you usually perform per year?
5. What is your success rate?
6. What is the earliest IUT you have ever performed?
7. Walk me through your IUT procedure.
8. Do you use IPT, IVT or a combination of both for your IUTs?
9. Do you perform IUTs in an operating room?
10. Do you sedate and paralyze the baby during an IUT?
11. Do you provide IV sedation for the mother during an IUT?
12. What kind of monitoring do you provide after an IUT?
13. Do you scan the baby 24 hours after every IUT?
14. What gestation do you consider viable?
15. When do you administer steroids to the baby?
16. Do you usually give Phenobarbital to mother leading up to delivery for liver development?
17. Who handles my normal OB care? You or an OBGYN? Who delivers?
18. When do you usually do the last IUT?
19. When do you usually want patients to deliver?
20. How many alloimmunized patients do you usually see per year?
21. Does your hospital have a level 4 NICU?
22. Do you think my next baby would survive? Have the same chance of survival as my previous allo pregnancies?
23. Is there a Ronald McDonald House nearby?
Allo Hope Terminology Library https://allohopefoundation.org/library/terminology/
Guests:
Dr. Ken Moise https://partnersincare.health/directory/kenneth-moise
Dr. Thomas Travett http://www.georgiaperinatal.com/dr-trevett/
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
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.
Dr. Ken Moise:
When a patient walks in my office, they have no idea who I am. They may have read about me, they may have Googled me, they have read articles I've written, they don't know what kind of doctor I am. The first thing I have to do is to establish trust with them, they are entrusting the life of their unborn child to my hands. And it's an incredible privilege, but think about it. How many times do you relinquish the life of another to someone you don't even know?
Molly Sherwood:
Welcome to The Allo Podcast. I'm Molly Sherwood.
Bethany Weathersby:
And I'm Bethany Weathersby.
Molly Sherwood:
We really did not need an introduction for this episode. We just were putting it together and we heard Dr. Moise say what he just said and it was a no brainer, we had to open with that. So we're going to talk today about the patient-provider relationship and finding the right care. And if I could ask any clinician in any specialty to listen to just one of our episodes, it would be this one.
Bethany Weathersby:
Absolutely. That was so powerful to hear Dr. Moise say that because that was my experience in all of my pregnancies, I had to hand over my baby's life to this person and trust them to take care of my babies. And I have been working in patient advocacy for about nine years, I've had four of these pregnancies myself, I've seen hundreds of women's pregnancies play out over the years and I have noticed that this topic that we're discussing today affects the outcome of an alloimmunized pregnancy more than most of the other factors, even the patient's titer or what type of antibodies she has or what number pregnancy this is for her. The doctor that she chooses and her willingness to advocate for the right care directly affect the outcome of a pregnancy. And so that's why this is so important and I'm really excited to be discussing it.
Molly Sherwood:
So let's just start talking about, there's so many barriers to care in general, of course, especially in our disease. So I mean, there's much we could talk about back and forth, but let's just share our thoughts on what gets in the way? What makes it difficult for us to access the best care?
Bethany Weathersby:
Yeah. Why do we have to advocate so hard and why do we have to make sure that we're choosing the right doctor?
Molly Sherwood:
Yeah.
Bethany Weathersby:
It's because this is a rare disease and so many healthcare providers just don't see it often and they don't have an opportunity to become experts, you become an expert by having experience, treating the disease and learning about it. But there's just not many of us in the grand scheme of things. And so there's this lack of awareness, lack of education and then just lack of experience, I think, because it's such a rare disease.
Molly Sherwood:
Yeah, I think so too. And there's also just not enough research about this disease. Research in obstetrics in pregnant women is lacking to begin with, it stems from the drug world because nobody wants to do research on a pregnant person.
Bethany Weathersby:
Right.
Molly Sherwood:
And so when you're looking for research about any pregnancy condition, it's usually sparse, but especially a rare disease. I mean, there's just not much out there and I think that has also contributed to inconsistent standards in what's acceptable for quality of care.
Bethany Weathersby:
Yeah.
Molly Sherwood:
Another thing is... Sorry, I'm just-
Bethany Weathersby:
Oh, go for it.
Molly Sherwood:
I can't help but think of more things. There's such a big lull in between diagnosis and meeting your maternal fetal medicine doctor. So I know for me, I found out that I had the condition when I was eight weeks pregnant and I didn't see my high risk doctor until I was 18 weeks pregnant. That was 10 weeks of me-
Bethany Weathersby:
Oh my goodness.
Molly Sherwood:
... freaking out. And thankfully I had a low titer. But we've talked about situations where a patient needs to see their doctor much sooner than 18 weeks.
Bethany Weathersby:
Yes. That must have been so scary to wait that long. There's also a lack of treatment options, which you touched on this earlier, especially in certain countries.
Molly Sherwood:
Oh, yeah.
Bethany Weathersby:
Just my three surviving babies needed lots of treatments to survive. We needed plasmapheresis, IVIG, intrauterine blood transfusions, we used phenobarbital, all of these things. And those treatments are not offered everywhere, they're not offered at every center in the US, some countries completely don't offer certain treatments to anyone. And when your baby's life depends on those treatments, that's really scary.
Molly Sherwood:
Yeah. And then also, we can't forget that there's a really important continuity of care that is special to this condition, which is first there's the OB, then there's the MFM, then there's a neonatologist after birth, nurses, hematologists, pediatricians. And we have to thread that needle of keeping everything continuous and high quality for that entire time.
Bethany Weathersby:
Yeah. Another barrier that I wanted to point out is an awkward one to discuss, but super important. And it's our culture's way of putting doctors on this pedestal and as patients, we feel like we are under their authority and we have to have this extreme reverence for them. I felt almost like I have to obey this person, like I do with a police officer or something.
Molly Sherwood:
Super excited to share the clips we have today. I mean, we already teased a little bit with Dr. Moise, but there are many doctors who are seeing and evolving with this new dynamic that we all hope to see. And I think we have some awesome examples today of what that looks like.
Bethany Weathersby:
There's a huge lack of resources, even the resources that are available are not easily accessible to a lot of patients. So this is a really hard pregnancy that we are going through, even if it's low risk and there's not intervention that's needed, it's hard. It's really hard on the woman. And so it takes a toll on her physically, mentally, emotionally, financially. And so I just wish there were more resources to help women through their Allo pregnancies.
Molly Sherwood:
Yeah. Right.
Bethany Weathersby:
Okay. So I think we covered most of the main barriers that patients face when they're dealing with this disease. Let's go back to the patient-provider relationship and let's hear Dr. Trevett share the balance between the patient and the provider during this type of pregnancy.
Dr. Thomas Trevett:
So I think a healthy patient-provider relationship is absolutely a two-way street. The patient should certainly listen to what the doctor is saying and respect that the doctor has some experience in what they're hearing and what they're facing and understand that sometimes that experience can trump some of their concerns. But I also do think that the patient should be allowed to express concerns and fears and wishes, especially because in this field, we're not dealing with just a patient, we're dealing with a parent of a patient, we have two patients. And your advocacy of the health of your child is certainly paramount in your hopes and fears and dreams and is necessary to you as the patient and the parent of a patient. So there are an awful lot of different variables that go into the discussions that are had between doctor and patient, but there has to be a two-way discussion, there has to be a respect on both sides, that there's experience with dealing and treating the condition on one side and a lot of anxiety and hopes and dreams for the patient and the patient's child on the other side.
Bethany Weathersby:
I love that he mentioned the parent side of things. He's dealing with me as a patient, but also I'm the parent of this patient. And so that adds just a very complicated side to things. But it's true, the trust between a doctor and patient is so important and I was lucky enough to have Dr. Trevett as my MFM for my last two pregnancies and that just made it so much easier. Sometimes I realized I was speaking up too much and I had to just trust him on something and other times he changed his direction and went with what I suggested. And it was just a great balance there. But with my first sensitized pregnancy, I didn't really know that I truly had a choice when it came to who my doctor was. I was just told, "This is who you're being referred to and this is the best hospital in the state." And so I was like, "Okay, that's where I'm going." But I had no idea that I really needed to think about who my doctor was and if that's who I wanted to be treating me and my baby.
Molly Sherwood:
Yeah. I think finding somebody that you trust. And it's what you're touching on, it doesn't mean that you walked into Dr. Trevett's office and said, "This is what we're going to do." It's just that you brought information and you guys had a mutual respect with each other where you both made some accommodations to allow for the best care possible and you felt heard and respected and there was a space for you in the office.
Bethany Weathersby:
Yeah.
Molly Sherwood:
Yeah. I love hearing about the relationship that you and Dr. Trevett fostered together and I think it's also a theme that we see in Dr. Moise too and he touched on it in the beginning of this episode with that clip that I want to kick to again and hear the rest of his thoughts. Just sharing about the relationship of trust and the big leap of faith that we give as parents to a doctor to help care for our unborn child.
Dr. Ken Moise:
When a patient walks in my office, they have no idea who I am. They may have read about me, they may have Googled me, they have read articles I've written, they don't know what kind of doctor I am. The first thing I have to do is to establish trust with them, they are entrusting the life of their unborn child to my hands. And it's an incredible privilege, but think about it. How many times do you relinquish the life of another to someone you don't even know, that you just met for an hour? So my job is to create an atmosphere of trust, which is a two-way street. If you feel like I'm giving you the correct information, then that's part of the trust. But I have to trust you to say, "Do you accept that information or do you question it?" And if you do, let's talk about it. Creating that trust and that relationship has to be engendered from the very beginning, it starts at the very beginning when we first meet each other.
Bethany Weathersby:
Wow, that was amazing to hear again.
Molly Sherwood:
I could listen to that all day.
Bethany Weathersby:
I know, it's great.
Molly Sherwood:
That was so well said.
Bethany Weathersby:
And when he talked about entrusting your child to someone you've just known for an hour, it made me think about my children. Would I just leave them with someone I'd known for only an hour? Would I let them babysit my children? Do you let a stranger babysit your children? No, you make sure that it's someone well, it's someone you trust or someone that has been interviewed. And you really go through these steps to make sure that it's the right babysitter and that's just someone who's coming over for a few hours to care for your children. This is the person who is saving your baby's life and protecting your baby's life.
Molly Sherwood:
Hearing him speak in that way about his relationship with the patient and taking his time to establish a mutual trust makes it clear to me that he has adopted this newer perspective of a doctor-patient relationship, which is that we are just talking about two people, a doctor and a patient, they're just two people. I remember when I was starting one of my first jobs and I was super nervous about approaching a client, I think, and my mentor at the time said to me, "Everyone puts their pants on the same way in the morning." And I still remember it. And he's right.
Bethany Weathersby:
I was thinking of just how, if you look at it like that, it's not a big deal when the patient questions the doctor, that should be expected.
Molly Sherwood:
I want to talk about what to look for in a doctor for this condition. I think that Dr. Trevett shares about the concept of this openness and the atmosphere of respect that he has grown to adopt as a doctor. So let's talk about that.
Dr. Thomas Trevett:
Prior to my experience with you, Bethany, I was probably a little bit more paternalistic or decisive about how I wanted to do things and how things should be done for the therapy and for the treatments that are done, where they're done, how they're done, when they're done. I do think that if you don't evolve with experience, you're probably not in the right field. If you don't allow the patient to ask questions, if you don't allow the patient to have their opinions assessed and respected and allow for the fact that things can be done in different ways, then you're not probably doing the right thing.
Bethany Weathersby:
As I was listening to Dr. Trevett, I just kept thinking, "I'm so thankful for amazing doctors, truly." I am just so grateful for these MFMs who respect their patients and evolve as a doctor. I mean, it must be such a hard job, especially when you're dealing with these rare, high risk conditions. And so for other patients trying to choose the right doctor, how will they know? How do they know if it is the right doctor?
Molly Sherwood:
It's so hard, there are so many different parameters that are specific to our disease. But firstly, I would say, I think that you and I would agree that we know when we hear a doctor speak in a way that is respectful and thoughtful and open. And the doctors we listened to today are perfect examples. So I think there's a gut reaction that we should all trust as patients.
Bethany Weathersby:
Yeah.
Molly Sherwood:
That's the first thing. But then talking about more concrete items because I like that too, I like to have a little checklist of what can I have in mind when I go to my doctor's appointment. So I think it's great to have a doctor who's easy to get in touch with, you should have a number that you can speak to somebody that day, hopefully immediately, but within hours. And also a doctor who's not distracted and rushed during your appointment. And that's hard to find because doctors are very often overbooked and so they are feeling the pressure to rush between appointments.
But if you have somebody who's willing to sit down with you and make a plan, that's really meaningful. That person should also allow you to ask your questions and explain something if you disagree with each other. I think the doctor should also give you your actual test results, I think we see this a lot in our patient base where their doctor says, "Oh, your titer is fine. Oh, your MOM was in the okay range for now. Oh, the baby's blood levels are not concerning." That's good to know, but I also would like to hear the number for myself and make that decision for myself. So this isn't to say that every doctor might... Not every doctor will fundamentally do this, but you can always ask.
Bethany Weathersby:
Right,. And can I just speak on that really quick? I encountered that over and over again in my pregnancies because there were so many scans, there were so many blood tests, there were so many different interventions. And often the patient will have to ask themselves, they will have to speak up and ask, often it's not immediately offered. And a lot of times the doctors are happy to provide that information, what is my MOM? And then they're like, "Oh, it's 1.3," or whatever. But occasionally the physician would be not offended, but maybe a little irritated that the patient's asking and then just, "Well, it's fine. I'm in charge here." But I want to repeat that these are the patient's own test results and it's their baby's results, they belong to the patient. And so don't ever feel bad about asking for that. And yeah, hopefully a great doctor is just giving you those numbers already.
Molly Sherwood:
Yeah. And like you said, if not, that doesn't mean we throw the baby out with the bath water, it just means let's ask them and hopefully they'll budge and that'll be the beginning of a more open relationship too. So I think that in the same vein of a doctor's willingness to accommodate these things, a doctor who's willing to learn more information if you bring new resources in, a doctor who is willing to collaborate with other doctors who are known to be experts in treating this disease, a doctor who is willing to refer, if necessary, if a patient requires it, if the doctor themselves does not believe that they're the best option for a patient.
Bethany Weathersby:
And I'd wanted to speak on the patients who have extremely low titers or know that they have had pregnancies without needing intervention in the past. This is something that is good to discuss with your MFM right up front is, if I did actually need intervention, would you be doing it or would you be referring me to another doctor? And if so, who would it be? And just make a basic plan like that, just have it laid out and then hopefully you'll never need it. But that's a really good way to just make sure you're receiving the right care and that everything's in place if you do need that IUT.
Molly Sherwood:
Yeah, that's a great point for those patients. I do think in that scenario, it's more about a doctor who will make a plan with you so that you know what to expect should something happen.
Bethany Weathersby:
Yes. And then if the doctor is unwilling to do that or unwilling to refer, then maybe that's time to get a second opinion.
Molly Sherwood:
Can you open up that dialogue with your doctor and say, "Well, why is that? Why is it that you set this threshold when we could also do something that requires a little more close monitoring and is still within the realm of normal recommendations?" Can you have an open dialogue with your doctor about that?
Bethany Weathersby:
Yes. And also when it comes to Kell. Kell specifically has been shown to occasionally affect babies at titers of even one or two. And so I love seeing a doctor who says, "You know what? I'm just going to be careful and proactive and do regular MCA scans, even though your Kell titer is technically below four." And that's a sign of an amazing doctor.
Molly Sherwood:
And you know what I would add to that? I can't remember if I've shared this thought before, but I wonder if sometimes the reason why doctors don't want to do that so-called extra monitoring or more vigilant monitoring, I wonder if it's because they don't know what they would do with that information. You know what I mean?
Bethany Weathersby:
Yeah.
Molly Sherwood:
I think a lot of doctors, and this totally makes sense for efficiency, for insurance, for everything, you're not going to order a test if it's not going to change your course of treatment. So if a doctor already knows that they are not going to do an IUT in their facility prior to 18 weeks, then why would they want to do an MCA scan, that wouldn't seem reasonable to them. So I think it's actually a great way of opening up that conversation of, "Well, maybe we should be doing something if we did find an elevated MOM after we just did an MCA last week." And so hopefully your doctor will explain their thoughts with you and you can work together to figure out if it's right.
Bethany Weathersby:
And that goes to the next one on the list, which is the doctor includes you as part of the decision... Sorry, oh my gosh. What is wrong today?
Molly Sherwood:
Not enough bananas. Bethany gave up sugar two days ago and she's literally laying on the floor. No, I'm kidding, she's not. But she wishes you were.
Bethany Weathersby:
Oh, I am struggling, you guys. I'm having intense brain fog.
Molly Sherwood:
So bad. That's so weird. Wait, one more thing. We were saying this morning, because I was talking to you this morning and I was in the car and I hadn't had my coffee yet, and I'm like, "This is unsafe, I should not be driving right now. I truly feel impaired, I need just my one cup of coffee and then I would be a safer driver."
Bethany Weathersby:
Yeah. And did you have your coffee?
Molly Sherwood:
Yes, and then I did.
Bethany Weathersby:
That's good.
Molly Sherwood:
And then I'm a much safer driving.
Bethany Weathersby:
Yes. All right. And now we're doing a podcast and you're on top of things, unlike me. Okay.
Molly Sherwood:
Okay. So includes you as part of the decision making team? Yes.
Bethany Weathersby:
Yes. Because again, this is your body, this is your baby, you should be a part of the medical decisions that are being made for your own body and your own baby.
Molly Sherwood:
Let me give a tangential, one more story.
Bethany Weathersby:
Okay. Do it.
Molly Sherwood:
So my husband is a clinician, not in this space, but he was complaining to me the other day about how it makes him so frustrated when he has preoperative instructions for his patients. And one of the things is that you can't have fake, acrylic nails on because it makes it so that he can't monitor the patient's breathing properly while they're under anesthesia.
Bethany Weathersby:
Yes.
Molly Sherwood:
And he was talking about how it drives him absolutely nuts when women still come in with their fake nails on.
Bethany Weathersby:
Oh, no.
Molly Sherwood:
I mean, honestly, if I read that, I would think, "Well, it's probably fine. I don't really want to rip my nails off." So we were having this dialogue about, okay, maybe that's frustrating, but I think you just have to educate them and say, "Actually, the reason I have this rule is because I really need to be able to monitor you and keep you safe." And it's like a revelation of, "Okay, maybe that patient isn't in the right, but you can just let them know what you need and just have a dialogue about it."
Bethany Weathersby:
Yeah, definitely. Man, that would be amazing. I'm going back through all my pregnancies, imagining if all the doctors did that and it's-
Molly Sherwood:
Yeah. If a doctor just said, "Well, I actually do this for this reason, this is my rationale for monitoring things or doing things thing the way that I do."
Bethany Weathersby:
Yeah. Okay. What else is on our list?
Molly Sherwood:
One thing, it's not always applicable, but it's a good marker, is a doctor who doesn't insist that you have an amnio to check for the baby's antigen status. That's an antiquated way of doing things. We know now that doing something invasive like that can trigger more of an antibody response and can raise your antibody levels. And also it does come with its own very unlikely risks.
Bethany Weathersby:
Yes.
Molly Sherwood:
And there are alternatives now, we talked about cffDNA testing, which is a blood draw on the mom that can tell you the baby's antigen status for some antigens. And also some women, if they decline an amnio, they basically elect to continue monitoring the pregnancy as if the baby were affected, even if you can't be sure. But that's the safest route if you were not able to determine the baby's antigen status.
Bethany Weathersby:
Yes. So that's just an example of allowing the woman to have her say in this decision because a lot of patients, including me, do not want to have an amniocentesis, especially since we don't have to, it's not absolutely necessary for the survival of our baby and there are other options. But sometimes if that's the way the doctor does things and that's the way they sometimes pressure the patient to do it.
Molly Sherwood:
Right. It's just a good example of something that if it's met with rigidity, then maybe that's a sign of a dynamic that is not encouraging to you.
Bethany Weathersby:
Yes, for sure.
Molly Sherwood:
And another thing is, I know this was critical for you, I should really let you speak on it, so I'll just tee it up and you can share. But a doctor who allows you and your partner to make your own choice about growing your family more. And you talked about it with what Dr. Trevett said to you in the hospital.
Bethany Weathersby:
Yes. Many doctors told us we could not have any more children. Two separate doctors in separate states both told me, "Well, I'm an only child and I'm fine. So you already have two living children you don't need to have anymore." So these men are making my family growing decisions for me. And of course, Josh isn't even in the room, they're just like, "This is what you should do." And other patients also are often told you can't have any more children because you have these antibodies. And sometimes they are pressured into taking permanent measures just because they have the antibodies. And those decisions really should be up to the woman and her partner and that's it. So yeah, when they give you space and they respect your authority on that topic, that's a sign of a great doctor.
Molly Sherwood:
Definitely. There's a lot of the same underlying theme, which is just creating space for each other in your dialogue, just mutual space to talk between you and your doctor.
Bethany Weathersby:
Let's hear another clip from Dr. Moise. Dr. Moise is an amazing doctor, so this is great to hear how he does things. When he gets a new patient, these are the steps that he takes to build trust with them.
Dr. Ken Moise:
I bring them into a room and I have a whiteboard, no matter where they are, I first ask him, "What do you know?" And they usually give me some basic information they found. I said, "Okay, let's just start from scratch." And I go up and draw a red blood cell and we talk about why this happened. And I try to allay their guilt of them attacking their own baby, that this is a natural immune process just like you make antibodies of the COVID virus. If you get infected with the COVID virus, your body reacts to that. And I take them through the whole process of why this happened and what's happening to their baby and then we talk about the whole plan from, "Okay, here's titer, here's MCAs, here's IUTs, here's delivery, here's what's going to happen after delivery." And then I give them the same information in a written pamphlet to say, "And everything I told you is written right there because I know you're going to not remember half of what I said and you're going to go home and read about it again and then you'll understand it."
But at the end of the session, it's always, "Okay, what questions do you have?" So we should encourage questions because that means the patient's interested in their care, we shouldn't discourage questions. I think the younger physicians sometimes may take that as an offense, my line is always, "I do plenty of these procedures, ask me what you want. If you want to get a second opinion, that doesn't bother me at all. I'm going to give you the best information and the best experience I have." But that comes with doing this for 35 years so I know my sense of ego's intact, you're not challenging me to ask questions or doubt some things I'm telling you, but I'll do my best to try to convince you that what I'm telling you is based on experience and data and some facts.
Molly Sherwood:
My favorite part is where he says, "My sense of ego is intact."
Bethany Weathersby:
Yeah.
Molly Sherwood:
But I really think that's a good synopsis. I think because his ego is intact, he's able to engage in these conversations and doesn't feel challenged when he's asked tough questions because he can give his honest answer.
Bethany Weathersby:
Yes. And he's totally fine if you want to go to a different doctor, there's no pressure to stay with him if you aren't meshing well or something.
Molly Sherwood:
So I think that sitting down with your patient and drawing out a red blood cell together is amazing and a sign of phenomenal care. So what other things would you say are signs of just over the top, above and beyond care?
Bethany Weathersby:
Okay, I'll do a quick list here because I feel like these are the doctors I had with my last three pregnancies. If the doctor offers cell-free fetal DNA testing as an option, and of course it's not currently available in the US, but we can have our blood sent to the Netherlands, have it tested there. And if your doctor is helping you do that test, that's amazing. If your doctor offers you all of the treatment options, all of them, puts them out on the table and says, "Here are some choices. Plasmapheresis, IVIG." That's for the patients with extreme cases like mine. If they are giving you all of your treatment options, that's wonderful.
And then of course, if they're willing to make a plan, we mentioned this earlier, for the possibility of IUTs, even with a low titer, that's great. If your doctor knows about or is willing to learn about the current clinical trials available for alloimmunized patients, wonderful. If your doctor follows up with you after your baby is born, the MFM hands off care when the baby is born to the other doctors, his job is done. But if he goes above and beyond and follows up with you after the baby's born, that's really sweet.
Molly Sherwood:
Yeah, definitely.
Bethany Weathersby:
If your doctor provides an ultrasound 24 hours after every IUT for peace of mind, so important. If your doctor uses a paralytic medication for the baby during an IUT, studies show that survival rates are higher if that's done. If your doctor is performing your IUTs in an operating room, if your doctor is willing to communicate with your other doctor after birth or even after hospital discharge, if he's willing to communicate with your pediatrician, the neonatologist, the pediatric hematologist, that really helps with that continuity of care you were talking about. And then really important, if your doctor cares about your emotional and mental wellbeing and provides resources for that during your pregnancy, that's wonderful.
Molly Sherwood:
That is wonderful. And that's critical in any pregnancy, but that's another soapbox moment that we'll have to talk about for another podcast.
Bethany Weathersby:
Yeah. Okay. Now we did this long list of these great characteristics for phenomenal MFMs, something that was not on the list was, has a ton of experience treating HDFN.
Molly Sherwood:
Right.
Bethany Weathersby:
And that's because if a doctor is willing to learn about the disease and collaborate with other physicians for your care, other physicians who have more experience with the disease, they can provide amazing care for you. And of course, not the actual technical procedures that do require experience like an IUT, but-
Molly Sherwood:
Right. And I'm glad you said that because that's a critical thing for many women who don't physically have easy access to the best doctor.
Bethany Weathersby:
And a lot of these doctors, these MFMs with experience treating this disease, are totally willing and happy to collaborate with other doctors, chat with them on the phone, email.
Molly Sherwood:
Another point of encouragement while we're thinking about this because it can feel really daunting to have to take this mental and emotional burden on of representing your baby during this entire treatment path. But this is a temporary disease and it's a treatable disease. And we've said it once, we've said a million times, how lucky are we that after our baby is born, after those first couple weeks or months, they are rid of this disease forever?
Bethany Weathersby:
Yes. Man, that was such a relief.
Molly Sherwood:
I know, it really is. So we'll just have to muster up the energy to be that vocal, outspoken patient.
Bethany Weathersby:
Yes. It's a limited time, you just have to do this for a little while and then you're done.
Molly Sherwood:
So let's talk about what that looks like specifically for you to be your own advocate. I think the first one is ask your doctor all of the questions, do the research in advance. I think that you're actually doing them a favor by coming prepared and aware of this disease because it's so complicated that if you do the hard work of educating yourself about what's going on in your body before you walk in the room, then you can cut to the chase of the really important stuff with your doctor. So we asked Dr. Trevett if it makes his job easier if his patient walks in already with an education about the disease.
Dr. Thomas Trevett:
Dramatically easier because the disease itself is very complicated and most people don't have any understanding prior to pregnancy and understandably so about how a mismatch in their blood type from dad's blood type would have any impact on the baby. So if they come to see me and they already have that fund of knowledge in their brain and understand how their immune system is potentially attacking the baby's blood, understanding that as a baseline is a tremendous benefit to the doctor.
Molly Sherwood:
How cool that he appreciates that? And I think it's so critical to have a patient who's already educated and ready to start talking. I think that, that's just a wonderful dynamic just to kick off with. And also on that note, we asked Dr. Moise for his tips on what we should be asking our doctors when we do walk in for those conversations.
Dr. Ken Moise:
They need to get to a maternal fetal person who's educated, who deals with these cases, I think they should ask, "How many cases do you take care of every year? What's your protocol for following a pregnancy with HDFN? When do you start MCA Dopplers? What's your experience at your center with doing MCA Dopplers? There's some finesse to doing the technique." I think when you get to the point of having procedures, that's where the critical questions really should start. And they should be things like, "How many of these do you do a year? And what are your outcomes?" And I think if someone says, "Well, I did one of these a couple years ago, I think I remember how to do it." Then I'd be like, "Okay, who do you normally refer to, to get these done?" But again, educate yourself about what's the experience of that physician, everybody's not the same, everybody doesn't have the same experience. And again, learn about your disease as you go, ask questions.
Molly Sherwood:
I love that list he rattled off of things to ask your doctor. I think if I were listening, I'd probably be sitting in my car going backwards to listen to it.
Bethany Weathersby:
Yes.
Molly Sherwood:
I'll have to write those down.
Bethany Weathersby:
Yeah. I was just thinking about when I had my preconception appointment with Dr. Trevett, I wrote down all of my questions in my journal that I took to every appointment and a lot of those questions were the same questions that Dr. Moise shared in his clip. And so I'm totally happy to share my list of questions that I asked Dr. Moise maybe in the show notes or something.
Molly Sherwood:
Yeah, let's definitely do that.
Bethany Weathersby:
Yeah, just so other patients can see how I grilled him when I went into that preconception appointment. He was amazing. Okay, I'm going to list a few more tips on how to advocate for the right care. And I think we're done after that. You might have to travel to find the right care. That's okay, I mean, it is hard, but that's just something some of us have to do. And it is okay to get a second opinion. It's okay, you're not going to hurt your doctor's feelings and if you do, it's probably best to find another doctor.
Molly Sherwood:
Whose ego is intact.
Bethany Weathersby:
It's intact, there you go. You can ask your doctor to collaborate with another doctor for your care, I had that with Dr. Trevett and Moise collaborated together for my care, even though they were in separate states. You can be a part of the decision making process. And also something that helped me a lot was going into every appointment with a journal, that I just mentioned, or just a notebook where I kept all of the test results, I had my questions written down ahead of time before going into the appointment and I also had really encouraging bible verses written out that kept me mentally and emotionally steady during those really scary moments. And also the Allo Hope Foundation has patient booklets that we will send you free of charge for your alloimmunized pregnancies and then also for the baby after birth.
Molly Sherwood:
Definitely. Yeah. And I think one other thing that I remember doing during my preconception appointment that paid off later, once we made a plan for what kind of monitoring there would be, I said, "Can you write that down in my chart please? Let's write this down right now, let's memorialize this." Because then later in my pregnancy when other doctors contradicted it, I would say, "No, actually we settled on this earlier, you can look back in my chart and that's the plan that we agreed to." And I was so happy to have that in writing.
Bethany Weathersby:
That is such a great idea. That is such a good tip. Okay also, one last thing, if you are thinking about having another Allo pregnancy, go ahead and schedule a preconception appointment with your MFM to discuss all of this ahead of time. And also, if you need to, you can shop around, you can meet with several MFMs before you decide to get pregnant. And then once you do get pregnant, you'll have a doctor that you trust and you'll have hopefully a treatment plan in place that you feel confident about.
Molly Sherwood:
If you or your partner or someone close to you has antibodies in their pregnancy, we're here for you and we have a great resource library on our website at Allohopefoundation.org. That's Allo spelled A-L-L-O Hopefoundation.org.
Bethany Weathersby:
The Allo Podcast is a production of the Allo Hope Foundation. It was researched and written by Molly Sherwood and me, Bethany Weathersby. It's produced and edited by CJ Housh and Eric Hurst of Media Club. The Allo Podcast is sponsored by Janssen Pharmaceutical Companies of Johnson & Johnson.