In our quest to share the experience of Alloimmunized moms, Bethany interviewed Monique Kinney, a contributor to the Allo Hope Foundation. Monique founded the premier Facebook support group for Alloimmunized moms before the Allo Hope Foundation was started in 2019.
In our quest to share the experience of Alloimmunized moms, Bethany interviewed Monique Kinney, a contributor to the Allo Hope Foundation. Monique founded the premier Facebook support group for Alloimmunized moms before the Allo Hope Foundation was started in 2019.
Episode themes:
Terminology used in this episode:
Allo Hope Terminology Library https://allohopefoundation.org/library/terminology/
Guests: Monique Kinney
Links mentioned in this episode:
Facebook support group: https://www.facebook.com/groups/antibodiesinpregnancy
Mari et al. paper discussing 12% false positive rate for MCA scans: https://www.nejm.org/doi/full/10.1056/nejm200001063420102
Research for this episode provided by Bethany Weathersby, Molly Sherwood, and Monique Kinney 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.
Molly Sherwood:
Your medical care decisions should be made in consultation with your physician who is familiar with your specific case. Hi, welcome to The Allo Podcast from the Allo Hope Foundation, I'm Molly Sherwood.
Bethany Weathersby:
And I'm Bethany Weathersby.
Molly Sherwood:
And we have an eye opening episode today.
Bethany Weathersby:
We do, we want to share more patient experiences.
Molly Sherwood:
Bethany, you interviewed Monique Kinney and she's a member of the foundation, she's an Alloimmunized mom and we wanted to get her story. She has had a long history in supporting our community. She started a Facebook group that later blossomed into what you two changed to The Allo Hope Foundation Support Group. So we just really love her dedication to our whole community and she just seemed like the perfect choice for someone else to interview.
Bethany Weathersby:
Monique is amazing. She was always so supportive when I was going through my pregnancies and she has been such a great encouragement to other patients as well. She was really instrumental in the development of the foundation actually, and the start of this podcast. And we even have an upcoming episode, actually the next episode after this, where we talked with her and her husband about his experience with Alloimmunization and HDFN.
Molly Sherwood:
I love that idea, that's going to be so cool to hear that.
Bethany Weathersby:
I can't wait, that's a really good one. I think that Monique's emotional vulnerability and just that journey she went through and her openness about her whole situation is going to really help a lot of patients and doctors.
Molly Sherwood:
I'm sold, I want to listen now.
Bethany Weathersby:
All right.
Molly Sherwood:
Look out.
Bethany Weathersby:
Sounds good. All right. Molly, could you cut in and explain a few things if they get a little confusing during this episode?
Molly Sherwood:
Who, me? I hate explaining things, no way. Yes, I absolutely will.
Bethany Weathersby:
Give us a little touch of the nerdy side.
Molly Sherwood:
Happy to, as always.
Bethany Weathersby:
All right. Monique, I'm super excited to hear your story from the patient perspective. So when did you find out about your antibodies?
Monique Kinney:
I found out about my antibodies in 2013. My first two kids are 15 months apart and when my daughter was five months old, I got my positive pregnancy test and went into the OB for the standard prenatal blood work and was a little surprised to see these antibodies pop up on my chart. I have one of those online patient portals, so I saw my results before I even saw the midwife for the first time.
Bethany Weathersby:
You're so proactive, I didn't even know what they were testing me for or anything when I had those blood tests. So you did not have any red cell antibodies during your first pregnancy?
Monique Kinney:
Right. And we figured that what happened was, our blood must have mixed during my first delivery and then that's what caused my sensitization.
Bethany Weathersby:
And you had never had a blood transfusion?
Monique Kinney:
Never had a blood transfusion. I did have one miscarriage before my first child, but nothing had ever shown up before.
Bethany Weathersby:
Which antibodies do you have?
Monique Kinney:
I have anti-E antibodies with the big E. And then my husband is homozygous for the big E antigen.
Molly Sherwood:
Let's talk about homozygous. So when she says this, she means that her husband carried two copies of the antigen in question, which for her was anti-E. So we know that if her husband is homozygous for big E, that means he has two copies of the big E gene and that means all of their babies are going to inherit the big E from him. So since Monique has anti-E antibodies, we now know that all of her babies that she has with him are going to inherit the big E and be potentially affected by her antibodies.
Monique Kinney:
All of our kids inherit one copy of the big E from him and one copy of the little e from me. That means all of our babies are at risk from my antibodies.
Bethany Weathersby:
When you found out about anti-E antibodies, did you know what that was? Had you ever heard of that?
Monique Kinney:
No, I hadn't heard of it actually, but it's funny because I had spent my entire high school career interested in medicine. I started volunteering at a health resource library when I was 13 in Lakeland Hospital. And I would spend hours just reading the medical books and the articles there. They had a patient family side that you could go into, but we also had a back room just for doctors with all the medical journals in it. So I had actually been interested in our H disease and blood and compatibility in pregnancy. So I knew all about anti-D antibodies, but I had never heard of anti-E antibodies.
Bethany Weathersby:
That's so interesting that you're already curious about it before you had the antibodies. And even after spending all that time learning about it, you still had never heard of anti-E?
Monique Kinney:
Yep. My husband and I actually, when we got engaged, I was like, what's your blood type? And he's like, O+, he knew because he was a blood donor. And then we actually laughed and we're like, well, we won't have to worry about that disease because we're both O+. And God also had a sense of humor and was like, watch this.
Bethany Weathersby:
You saw online that you had these antibodies, and then what was that first appointment like after you got those test results?
Monique Kinney:
My first appointment probably looked a little different from other people's because I knew about my antibodies ahead of time, so I had a week and a half to research them. And I had also just recently graduated from university where I got my degree in biology and I went pre med. I had taken the MCATs and everything, so I was very familiar with medical journals and research. So I went in with articles printed off, and notes and I said, I need to have my husband tested and I want a referral to a maternal field medicine specialist. My midwife, she was like, I've never seen this be a problem in my 20 years here, but I'm happy to do those things for you.
Molly Sherwood:
Monique's midwife did eventually refer her to an MFM, a maternal fetal medicine specialist, and they ordered tests for Monique's husband. That is how they found out that he was homozygous for the big E, meaning all of their children were going to inherit the big E antigen.
Monique Kinney:
I don't really remember feeling disappointed, I just remember feeling like, now we know, we can move on to the next step. Because I feel like, in a way, it would've been harder if he would've come back heterozygous and I never would've known for either pregnancy what to expect, is my baby negative? Is my baby positive?
Bethany Weathersby:
What was your titer?
Monique Kinney:
My titer was one less than one when I was first diagnosed. So that entire pregnancy with my son, my levels did not rise at all. I did see the MFM, he gave me a care plan, I brought the same articles into him. And I just loved my MFM because I brought in articles and it was great because he talked to me like I knew what was going on, he talked to me like a peer, he didn't dumb things down. He didn't have that condescending tone or attitude like sometimes women say that they experience. And actually, what really sealed the deal for me, he brought me articles to read at my next appointment and so I brought him new ones. He's like, great, I brought you some new ones too. And my folder of articles grew, so he really did an awesome job.
Bethany Weathersby:
After your son was born and he was in the clear, did you think, maybe we shouldn't have anymore. Were you hesitant to grow your family after that or were you like, no, I know what to do now?
Monique Kinney:
We were just letting God decide our family size in when we'd get pregnant, none of my children were planned, they were all just, surprise. So when he was eight months old, I got my next positive pregnancy test and we ended up having a little girl.
Bethany Weathersby:
Did you feel more confident going into this pregnancy?
Monique Kinney:
I think so. I would say that it was more confident and a little more easygoing. I went in right away for my prenatal blood work because I knew, we need to get these levels, we need to start tracking these things again. So her pregnancy was quite a bit different than his. Actually, we still had the same MFMs, we still had regular scans and then all of a sudden her numbers started going up and our MoMs went from 1.09 to 1.3, 1.45 and they just kept getting a little higher and higher, it was scary.
Bethany Weathersby:
Was that correlating with your titer going up as well or was your titer still pretty steady and low?
Monique Kinney:
My titer stayed the same. Well, it went up a bit, it went from one less than one to one less than two. So it's not a huge change, just a tiny bit higher.
Molly Sherwood:
I want to explain quickly that Monique's kids are a little older now and at the time that she was going through this with her children, the way that titers were reported, you would always report the 1: and then the actual tighter number, so 1:16, 1:32. And she says one less than one, what she really means and what we say now, is just the second number, which is the actual titer. So her titer is less than one at that time.
Monique Kinney:
And when I started getting these high readings, the doctors didn't think that it could be from the antibodies, but they weren't sure. Because everybody had seen articles that said titers are not an accurate indicator of anemia in a subsequent pregnancy. So they were like, we're definitely going to keep scanning just to be safe. They bumped my scans up to every other day.
Bethany Weathersby:
Do you remember what trimester you were in?
Monique Kinney:
Late second trimester, early third trimester. I am one of those people who likes to be prepared, so I went into each appointment, each MCA scan, knowing what I call the bad number.
Molly Sherwood:
The MCA scan, as we previously talked about, is the scan of the baby's middle cerebral artery and the blood flow speed in that artery will tell you whether the baby is showing signs of anemia. And so if the speed of that flow is 1.5 times the median speed for a baby at that age, that's what we call the multiples of the median. So if that flow is 1.5 multiples of the median or higher, that's what we call the bad number. That's what Monique is talking about.
Monique Kinney:
I actually knew because I was watching the ultrasound screen and I knew when that number came up and I'm like, it's too high. And I started to tear up and the ultrasound tech was looking at me because she knew I knew what it meant. And she's like, it's okay, just hang in there. And then she went to go get the doctor and the doctor re-scanned and he was like, so here's what we're going to do.
Molly Sherwood:
Monique's MFM referred her to specialists at the University of Michigan for a possible IUT, which we really value whenever we see that happen because we realize it's pretty impossible to expect every MFM to be an expert in conducting IUTs. But knowing when to refer is just as valuable in situations like this.
Monique Kinney:
I left that appointment, I was nervous, I was upset, but I did feel like we have a game plan. But I was also really emotional. I remember walking through the hallway and just thinking, Just keep it together until you get to the car, just get to the car first. And once I hit that car and that door shut, the waterworks started flowing and everything. And then after a minute or two, I'm like, we got to get going now so I'm like, turn it off and next step.
I immediately called my parents before I even called my husband and I'm like, I need you guys to drive up here, you have to watch my kids. So my parents made the four hour drive up to watch my kids, but that way I had to call them first because it was late afternoon, they needed the time to pack and get up here before dark and everything because I had to leave early in the morning.
Then I called my husband, that was an interesting conversation because he worked in a factory at that time so it was noisy and loud and I don't think he quite understood. I don't think he could hear everything I was saying when he got home from work a couple hours later, I told him everything and it clicked and he got it. It was really stressful and hard just not knowing, is your baby going to be okay?
Bethany Weathersby:
When you got in the car and you were crying and just super fearful and anxious, what were you most afraid of?
Monique Kinney:
The giant needle.
Bethany Weathersby:
Really?
Monique Kinney:
Yes. I think I was about 30 weeks, so I was far enough along. I knew she could be delivered and she'd be okay in a NICU. But just the unknown and I don't like needles, I was most nervous about the fact that it's a surgical procedure and I did not want it to turn into an, we're doing a C-section right now. I think that's what I was the most afraid of.
Bethany Weathersby:
It is a big needle, it is a giant needle so I don't blame you. The next day you went to the MFM and did husband come with you?
Monique Kinney:
No, actually. And I don't remember why because his work is always so good about letting him take off anytime he wants to, he doesn't need to give advanced notice. So I don't remember why he didn't come with me, but my dad drove me actually.
Bethany Weathersby:
That's nice.
Monique Kinney:
That was nice because it was about a four and a half hour car ride. It was nice in a way to spend some quality time with my dad talking and stuff. And I did explain the disease and what was going on to him, but also just to catch up and talk because my dad and I would always do things together, play video games, stuff like that so we just had that time together. And then when I got to U of M, the appointment went well, it went smoothly and the doctor scanned my baby and her MoM had went down and it was a 1.3, so that was great. No further testing was done that day, but she did give me instructions for after birth because I'm like, I'm seeing this expert, I should ask all my questions about how this birth could look different than my other at birth.
She actually said, don't wait for the baby's bilirubin results to come back. She's more than likely going to have bilirubin issues with anti-E and having some higher levels. So just get her under lights immediately after she's born, don't wait for those test results to come back. And I'm like, I can deal with this. I wrote it down in my notes, I'm like, I'll make sure that happens. And then also, the town where I was living at has two different hospitals and so my midwife is at one hospital, my MFM was at another hospital and I could choose where to deliver. So I asked her, where should I deliver my baby? This hospital does not have a NICU, but the other hospital does, what would be the best choice for my baby. And she recommended switching to the hospital with the NICU, so we did.
Bethany Weathersby:
That's such a great tip for moms listening. Ask a lot of questions, ask until you understand. So often, we are afraid to ask questions. We don't want to be offensive, we don't want to take up too much time. But for the sake of your baby's health, it's very important to ask a lot of questions. Did you go into that appointment with those questions ready to go?
Monique Kinney:
No, but while I was there I'm like, she's not in immediate danger right now, so what does the next step look like? And I do remember asking, what if after I get back home my levels go up again? She's like, you just come back here. And I'm like, I can do that. And then I moved on to, that's checked off, we know what's going to happen if it goes up again. And then now, what's after that birth? So then I just started asking birth questions.
Bethany Weathersby:
Did the MoM go up after you went back home?
Monique Kinney:
It did go higher, but it never hit that 1.5 again until right before delivery. So we spent several weeks just sitting 1.45 or 1.4 or there was a 1.49, she would always go right back down. She spent weeks up there and I'm like, seriously child? This was frustrating. But it also contributed to postpartum anxiety. I didn't know you could get postpartum anxiety during pregnancy because it's called postpartum anxiety. But after looking it up, it's really common for women with high risk pregnancies to get anxiety during their pregnancies. And who wouldn't when they're worrying about their baby all the time?
I struggled with that and I also struggled to bond with her. Because I remember thinking, if something does go wrong, maybe it'll hurt less if I'm less attached, which in retrospect is silly, but that's how I felt for a long time when she was bouncing around with those high numbers. I was trying to guard my heart a little bit and then I remember breaking down one day and like, all babies deserve to be loved no matter how long they're here for. And that was a turning point for me, but that didn't happen until 36, 37 weeks, I didn't set up the nursery until the last minute.
Bethany Weathersby:
We are suddenly facing these high stress situations and we have to make these sometimes life or death decisions for our children and it can be so stressful, but nobody prepares us for this. That's how I felt, it was like no one prepared me for this, there's no guidebook for how to handle this type of pregnancy emotionally or mentally. And you feel on your own and there's this doctor who's helping you with the physical side of things, but for me at least, I felt like, who can help me with this part of it, I don't know what to do? So how did you handle the anxiety? Were there any things that helped or did you not know that it was technically anxiety until after?
Monique Kinney:
I didn't know that it was anxiety until after she was born and somebody's like, it's postpartum anxiety. I'm like, but it's been happening all through my pregnancy. And they're like, it happens during pregnancy too. I'm like, well, then who named it this? Because that's not a very good name. I'm glad to see the names have been updated to Perinatal Mood and Anxiety Disorders because Perinatal is around birth. So it's great that it reminds people more that it could happen during pregnancy and after birth.
Because I was like, I'm going crazy. I don't know what's going on, but I felt like the only person in the world who felt this way and I was going crazy. And then when somebody said that and I had a name that I could look up and see how common this was, I'm like, why aren't women talking about this more? Why aren't we helping each other and preparing each other for this?
Bethany Weathersby:
I think that's a pretty common feeling for women with Alloimmunized pregnancies. And I do wish there were more resources for women during pregnancy when you're in the thick of it.
Monique Kinney:
I didn't have coping tools or anything during pregnancy. It wasn't until after I had an anxiety attack when my baby was a month old and I was sitting in the dentist's chair that anybody ever put a name to how I had been feeling. So I had no coping tips, nothing, it was harder. I did eventually conquer my anxiety for a while. I decided to do the scariest thing that I could think of, which is probably not the best way to get over anxiety. But I actually did an obstacle course 5K, where you have to climb up things 20 feet in the air and then jump down and it was terrifying, but I'm like, I made it through this, I can get through anything.
Bethany Weathersby:
And that was after the baby was born, right?
Monique Kinney:
Yeah, my husband was carrying her around in his arms and walking around the track outside.
Bethany Weathersby:
Tell me about her birth. She was right on the line right before birth, you said?
Monique Kinney:
Yeah. So at 37 weeks she had an MoM of 1.5 again, and my doctor was like, Well, it's just because you're close to birth. If you want a C-section, we'll do a C-section and get her out now. If you want vaginal though our hospital policy is 39 weeks. And I had such severe allergies, I'm allergic to antibiotics, pain medicine, I'm like, what could you even give me for a C-section? And so I really felt like my life was in jeopardy if I were to agree to have a C-section. So I felt like I had to have the vaginal birth, but it meant two weeks of waiting when the last number I had on her was at a 1.5. And it was the worst two weeks of the pregnancy because I spent it wondering if my baby was even going to be okay or healthy enough for delivery and that was really hard.
I'm hopeful that things have changed now, I know new guidance from ACOG and SMFM recommend women be delivered at 37 to 38 weeks. So that shouldn't be happening anymore, that experience that I went through, but that was really hard. When I went to have her, it was very different from my son's birth. When my son was born, he had about nine people in the room for him and there was a team from the special care nursery there, my midwife was there, an OB was there, and a couple of medical students were there, plus several labor and delivery nurses because everybody wanted to see this oddity, this antibody birth.
And now, everybody got to check out the baby, they did the tests and after about a half hour he was cleared. He never left the room, but they're like, we definitely don't need to take him to special care. Whereas in contrast, my daughter's birth, there were two people in the room, both are nurses, when I pushed her out and they didn't want to run the blood tests after birth. I asked, they did do a court blood for blood type and Coombs test, but they refused to check her bilirubin and they refused to put her under bili lights like the MFM at U of M suggested.
Bethany Weathersby:
What was their reasoning for not doing those very basic tests?
Monique Kinney:
It's not our policy.
Bethany Weathersby:
And this was the bigger hospital with the NICU?
Monique Kinney:
Yes, the bigger hospital with the NICU would not run my daughter's bilirubin test at birth and they would not put her under lights like the MFM said. Because our policy is not to check bilirubin until 24 hours old, if she turns yellow, we'll check her sooner, he said, but we aren't going to check that. So they had her results, they knew she was Coombs positive, but they still would not check her bilirubin. That hospital wasn't affiliated with U of M, they didn't have those records.
It was very stressful, I had all the articles, I had done a great job advocating for my son, but I just was not getting anywhere at this other hospital. I had switched to what was supposed to be the best hospital in town and I feel like they ruined my birth. My first daughter was jaundice, so I knew what to look for. And in the middle of the night, I noticed the bridge of her nose turned yellow and she was starting to get it around the eyes. And I told the nurse and I'm like, no, I want to see that doctor and I feel like that's the only reason he agreed to that test, and so I think he did it just to shut me up.
He ran the test, her bilirubin came back high. She was about six hours old and her bilirubin was around a six, which is higher than it should be. And I remember within half an hour, they were rushing in lights. They literally ran into the room with the bed of lights and they took her and they're like, she has to go under right now. And in a way, it felt validating, this is what we were trying to tell you all along, she needed help and she was finally getting the help she needed. So the doctor was apologizing, I'm so sorry this happened and then he is like, are there any other tests that you want run or that need to be run? And I'm like, well, since we're here, her neutrophils need checked and her platelets need checked because these are the other two side effects of HDFN and that bilirubin needs checked. It took my baby turning yellow and basically an accident and a preventable one for him to wake up and listen.
Bethany Weathersby:
And that is such a simple blood test that doctors can do to check on babies bilirubin and to prevent disaster. You can treat it so easily.
Monique Kinney:
Exactly.
Bethany Weathersby:
Listening to you tell your story, it occurs to me that women dealing with Allo pregnancies need to prepare for birth very differently than women with a more typical pregnancy. In general, women prep for their baby by nesting, but with an Allo pregnancy, not only is the mom nesting, but she has to educate herself and her partners or doctors and any number of other people that might be involved while also taking care of herself and usually other children. Added on to all of this, is that patients see so many different providers along the way from MFM to OB, to neonatologists, pediatrician, it can be really overwhelming and isolating. Did you ever feel completely overwhelmed by those transitions or did you ever feel disconnected?
Monique Kinney:
Not so much because I wasn't relying on the doctors communicating with each other, I was relying on myself being that bridge. I have a large folder, it's full of articles, it had all of my baby's numbers and test results from pregnancy. I tracked everything so that I could be my baby's medical record and be her advocate.
Bethany Weathersby:
What advice would you have for other women who haven't delivered yet but that's in their future?
Monique Kinney:
One of the biggest things is, it's great if your titers are low, but just because your titers are low, don't expect it to be smooth sailing after birth. That's one of the things that I've seen a lot in the support group that I created, is that women are told, your titers are low, your baby will be fine, and then they end up having bilirubin struggles and being in the hospital for a week or two weeks to take care of that bilirubin.
My advice for women would be, to be aware of the tests that your baby needs at birth and keep up on that monitoring. Even if you've had low titers, if your baby comes back Coombs+, they need follow-up blood work for up to 12 weeks because they can develop delayed onset anemia later, they can develop high bilirubin later. Bilirubin due to antibodies tends to peak on days four to six, so your baby may be fine in the hospital but might turn yellow when you're home. In that case, you need to take your baby back in.
Bethany Weathersby:
Now that you're finished having children, biologically at least, how do you feel about your antibodies? Because you do still have anti- E antibodies?
Monique Kinney:
My antibodies have been such a big part of my life for the last eight years. It's a little weird, I feel like they'll always be there. Biologically, the antibodies will wane over time, for most women it's called antibody evanescence. But then when you are exposed to the antigen in the future through a blood transfusion, they'll jump right back up, that part's called antibody boosting.
I know that I'll always have my antibodies, I do carry a medical alert to prevent hemolytic transfusion reactions and make sure that I only get blood without the big E antigen. But overall, I actually feel like my antibodies were a blessing. I know for most women it feels more like a curse, but I have been able to use my antibodies to help hundreds of women and their babies. So it's really been nice to be able to see that one person can make a difference.
Bethany Weathersby:
Well, I want to say thank you so much as a patient for all that you do. I know that during my pregnancies, you were such an encouragement to me and such a leader, I felt inspired by you to help others also with my story and so thank you for that. Thank you for your support and your encouragement and your leadership as a patient. And also, thank you for all of your help as we try to advocate for these babies and to keep them safe. And thank you for this interview, it was so wonderful to hear your story.
Monique Kinney:
You're welcome.
Molly Sherwood:
Monique is such an inspiring mom. Her struggle from the hospital bed with the nurses to get that treatment for her baby just really shows you what you as an informed mom can be capable of to protect your baby.
Bethany Weathersby:
Mm-hmm. And unfortunately, that's just what we have to do sometimes. This is a complex rare disease and we have to advocate for ourselves and our babies, we have to be their voice.
Molly Sherwood:
Yes. And I do hope with this podcast and even with Monique's experience as an example, we can help get this dynamic changed. And I really want to thank Monique, again, for her contribution, not just for this interview, but to the podcast and to everything she does and continues to do to support women.
And that Facebook group that she was so instrumental in establishing is something that you and I are in there every day talking to women going through this right now. So if you have questions or just need a little support to anyone who's listening, we encourage you to reach out to other moms like us or join our group and just find a supportive space where you can share and map out the best path for you.
Bethany Weathersby:
It is such a great place, our support group on Facebook, because this disease can make you feel so isolated in your real life. So it's just amazing to have that support of this patient community who can understand what you're going through. And we really appreciate Monique's work on making that space so inviting and empowering and encouraging.
Molly Sherwood:
Yes, she really did do that.
Bethany Weathersby:
And if you are a patient with red cell antibodies and would like to join our group, it's called Antibodies in Pregnancy and Allo Hope Foundation Support Group and it's on Facebook, so come find us.
Molly Sherwood:
If you, your partner, or someone close to you has antibodies in their pregnancy, we are here for you. We have a great resource library on our website @allohopefoundation.org, that's A-L-L-O hopefoundation.org, thanks for listening.
The Allo Podcast is a production of the Allo Hope Foundation, it was researched and written by Bethany Weathersby and me, Molly Sherwood. Thank you also to Monique Kinney for additional research and writing for this episode. 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.