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Taking a Breath: A Stop the Clot Podcast is a show committed to shining a light on the dangers of blood clots and breathing life into The National Blood Clot Alliance’s mission of pushing these preventable killers to the forefront of public discourse. We will hear the stories of notable blood clot survivors like Olympic medalists Katie Hoff Anderson & Tatyana McFadden, among others, as well as the expertise of medical professionals to provide connection, empathy and resources to listeners like you. At Stop the Clot we know the patient because we are the patient. Journey through this miraculous series with hosts and blood clot survivors Leslie Lake and Todd Robertson as they, with the help of listeners like you, change the way we think about blood clots. Join us as we collectively stop the clot.
The National Blood Clot Alliance (NBCA) is a 501(c)(3), non-profit, voluntary health organization dedicated to advancing the prevention, early diagnosis and successful treatment of life-threatening blood clots such as deep vein thrombosis and pulmonary embolism.
STC_S02E08_AaliyahWalker
Todd Robertson: [00:00:00] The joy of bringing new life into this world is a gift. The moment you touch their hand and hear their first cry is a monumental vignette unlike any other. Even in this moment, everything can change.
Brady Walker: All they were doing at Tub Bowl, which was probably two or three minutes after they had the babies out, Aaliyah looked at me and she said, I can't breathe.
Todd Robertson: What do you do when one of life's most joyous moments becomes an unimaginably harrowing experience?
Aaliyah Walker: I had ICU delirium after I woke up, so when the doctor came in to talk to me about it the first time, she was very gentle in explaining the fact that some things had happened. Several things had happened.
Leslie Lake: Every six minutes, somebody in America dies of a blood clot.
Todd Robertson: We're here to change that statistic. Welcome to taking a [00:01:00] Breath, a Stop the Clot podcast.
Leslie Lake: An award-winning podcast dedicated to bringing awareness of the dangers of blood clots. From the clotting disorders community to the world,
Todd Robertson: with the help of many notable blood clot survivors, we are here to give you the knowledge and the skills you need to prevent this silent killer.
Leslie Lake: My name is Leslie Lake. I am the president of the National Blood Clot Alliance, and I am a blood clot survivor.
Todd Robertson: And my name is Todd Robertson. I am the patient engagement Liaison for the National Blood Clot Alliance, and I am a seven time blood clot survivor,
Leslie Lake: and we are here to stop the clot.
Life is incredibly enigmatic. Moments of great elation can be coupled with a harsh reality of unexpected loss or near death experience. Our capacity to learn and grow through these moments, [00:02:00] despite it all our near proof of our resilience, our adaptability, and our capacity to find love even at our darkest times.
Our guests today know this resilience firsthand here to discuss their journey of blood clot survival as a family. Please join me in welcoming the wonderful Aaliyah and Brady Walker joined by their children, Aurora Orion, and Izzy.
Brady Walker: My name is Brady. I'm Aaliyah's husband. I'm holding Aurora, and then off camera, who you guys can't see is Izzy.
She's our 2-year-old who I'm sure will make an appearance.
Aaliyah Walker: And my name is Aaliyah. I am holding Orion who is peacefully asleep right now. We'll, hope none of the babies wake up, but we're so glad to be. What I do remember was I work on a co college campus, so we did move in right before the twins came, and I was immensely active up walking around seven, eight hours a day.
So when we were preparing, we got to the [00:03:00] point where we were doing weekly appointments for the twins. I think I'll let Brady share.
Brady Walker: Yeah, so I'm kind of her memory for all this 'cause she doesn't remember anything. So she had coliostasis towards the end of her pregnancy, which her only real symptom from the Coliostasis was severe itchiness at night on her stomach.
But because she had Coliostasis, she got referred to an MFM. So we did weekly appointments with her MFM. And on September 20th we went in for a weekly appointment. With the MSM at Sibley Memorial Hospital in Washington dc, which is where Aaliyah was gonna deliver, and they saw that Baby B, which is Aurora right here, she was super low on Amniotics fluid and she already had a fetal growth restriction.
And then baby a Orion had a fetal arrhythmia, which they weren't worried about. They said it would correct after birth, which it did. The fact that Aaliyah was already 35 weeks, six [00:04:00] days, they just decided that it was better to have the twins out and be able to care for Aurora since she has low amniotic fluid than continue the pregnancy.
So they sent us over to labor and delivery where we waited for about eight hours. It was considered a non e c-section, and then we went into the C-section. Everything was normal up until that point. The C-section took place. They got both of the babies out. Aliyah saw both of the babies was commenting on, you know, they're much smaller than Izzy was.
Aurora was bald. She was commenting that this baby's bald and she was worried that she didn't have any hair. And then right after that she was doing a tubal because we decided we didn't want any more babies. So while they were doing the school bowl, which was probably two or three minutes after they had the babies out.
Aaliyah looked at me and she said, I can't breathe. And then the doctor asked the anesthesiologist like, is everything okay? And the anesthesiologist was like, yeah, she's fine for right now. And then like 30 seconds later, [00:05:00] they lost her pulse and they rushed me out of the room. And then at that point. The nurse came out, they, it took about five minutes to get her heartbeat back.
They did one round of compressions, one round of epi. They were able to get her pulse back and then her labor and delivery nurse came out to me and told me she didn't have a heartbeat. We got her back. She's intubated, so she has a tube in her throat. We're gonna take her down to CT if you'd like to wait for at the ICU.
'cause after ct, she'll be gone to the ICU since she's now on a ventilator and she lost her heartbeat. So at that point, after the ct, her labor and delivery nurse came to find me, and they were between an amniotic fluid embolism or a pulmonary embolism, what they thought it was. And then the doctor came and told me that she had a pulmonary embolism.
She said a massive saddle pulmonary embolism with RV thrombus. So she also had a blood clot. In her right ventricle of her heart, [00:06:00] so she was in the ICU there. She was also experiencing hemorrhaging. So they were trying to balance, we need to do anticoagulation with heparin, but she's bleeding. So how do we stop the bleeding while doing anticoagulation?
They weren't going to be able to provide the care that she needed, so they transferred her to John Hopkins, where she was medevaced to Hopkins and spent another eight days in the ICU, and then after that, another 15 days in the hospital. From that point to when she was airlifted, it was about 1:00 AM to about 3:00 PM so about 13, 14 hours.
But so many things happened in between then where it was like. It felt like 30 minutes after, like it felt like no time had elapsed at all, honestly, because things were so touch and go in that timeframe where it was like new information was being told, new things were happening, like. They were doing this procedure to try to stop bleeding, [00:07:00] placing a IVC filter in to try to stop any more clots from moving up from her legs to her art and lungs.
So it was about 13 hours for her to be medevaced away, but it felt like the snap of a finger. Honestly, it was 25 days total, about nine days in the ICU eight days intubated. The ICU was really like the most up and down experience. Once she got. Downgraded to like regular rehab floor. It was really just getting her therapeutic on the blood thinners.
But I can walk you through the ICU experience and it was really just a rollercoaster. Like there's no one solution from my understanding of talking to the doctors to solving blood clots in pulmonary embolism. So at the very beginning, they walked us through, there's three options you could do, just anticoagulation.
You could do Thrombis, which is the catheter I believe, to dissolve the blood clots. There's the medication, the clot busting medication, [00:08:00] which Aaliyah wasn't a candidate for, 'cause she had just undergone surgery, and then there was open heart surgery. So all of those treatment options were on the table.
And then it was just like the first day was trying to decide what was best. And Interventional radiology surgeons came and talked to me the first day and they were like. We're not gonna do thrombolysis with the catheter because we're worried about pushing the large clot that she had in her arteries further towards her heart and causing her to go into cardiac arrest again.
So they didn't feel comfortable doing that unless she was on ECMO with support for her heart and things like that. A cardiac surgeon came and talked to me and they were gonna do open heart surgery, I think on the second day because the clot was just so large. And the head ICU doctor at Hopkins, Dr.
Needham, he was like, Aliyah is 26 years old, she's young, she's fighting, we'll do open heart surgery if [00:09:00] it's a last resort. So they took the wait and see approach, but everything still in the ICU was up and down because she had so many other complications like. She had major bleeding. She was hemorrhaging from her uterus, so they did, uh, embolization to stop the bleeding from her uterus.
She had several hematomas formed under her abdomen, so they reopened her C-section to remove hematomas, and they just left her open until she closed on her own. So she went through that. She underwent sepsis, which they didn't know where it was coming from, so they had wide range antibiotics. And at the same time she arrested, which you don't know, brain function until you can wean them off sedation to test neurological functions.
But every time they tried to wean her off sedation, Aaliyah is a natural fighter, so she would try to pull the tube out of her throat. So they would have to heavily sedate her and then try to extubate at a later [00:10:00] date. So like it went from open heart surgery, which is obviously a major surgery is on the table to.
Wait and see approach. We're considering this, but she's young and strong and we're gonna wait. If she doesn't stop bleeding, we're gonna have to perform a hysterectomy. But wait and see approach. And luckily like Miracle, we didn't have to do any other major surgeries, but it was just the up and down of, we were just supposed to have twins, we were supposed to be home by this point, and now she's intubated, can't make decisions on her own, so I'm left to be right.
Is this the right approach or should we, you know. Push her towards these other operations to get a quicker result. But thankfully, like with the help of the doctors at John Hopkins, everything turned out to be okay, but it was really just a roller coaster every day.
Aaliyah Walker: I like to say I ask Brady all the time, when did I actually wake up again?
Because there's an entire story that Brady had told me about me getting up and telling the [00:11:00] doctors I need to be at the mall right now. But I do remember one day I kind of just woke up, so my memory starts back from the baby shower, which was in July. So everything after us walking out of the baby shower and driving home, I do not remember.
When I did wake up in the hospital and I felt that I actually knew what was going on, which I completely did not, I was like, oh, great, so everything's wonderful. I'm just waking up from a nap. How's everything going?
Brady Walker: It was hard. And Hopkins offered like a psychologist to come in and kind of talk about ICU delirium from their perspective, and they kind of said, let Aaliyah ask questions.
Don't overwhelm her with information because that can cause like anxiety and panic and all these things. And Aaliyah has an older grandmother from Trinidad and Tobago who flew in when all this happened. And the day Aaliyah woke up, my brother brought her up to the hospital and the first thing she says is, don't worry, the babies are doing good.
And Aaliyah just looked like, [00:12:00] what? Like, because Aaliyah didn't even know she had just delivered and stuff. So it was like a kind of a balance to keep all of our family like. Let Aaliyah ask questions, let her guide the memory process of everything, which was definitely a challenge, but luckily we had resources to help us through that.
But talking to her about the event itself was definitely heavy.
Aaliyah Walker: So I think the process was probably very difficult for Brady because I am the kind of person who will just ignore things. So if something went badly, I will not talk about it. I don't wanna hear about it again. So I wasn't bringing anything up.
I wasn't asking him any questions. I was just like, when do we get to go home? What are the twins? Okay. All of just regular SM things, like it's another day. So he was kind of probing and poking, like, do you remember this? Do you have any recollection of this, that, or the third, like very little things. And I'd be like, no, actually [00:13:00] I don't.
So when the doctor came in to talk to me about it the first time she was. Very gentle in explaining the fact that some things had happened. Several things had happened and they're gonna integrate me into the conversation as things come up. And I was very much confused, of course, but I. I was like, I'll go with this process because I don't think I have the capacity to be overwhelmed right in this moment.
I was still in the hospital and Brady each day he would just break things down a little bit more. To me, the doctors were also more forthcoming after I had gotten the gist of what happened. So we had doctors come in a couple hours every day and just explain things to me, like things that I had questions about.
So. I was so eager to leave the hospital because when I had my first, we got to go home five days later as a family altogether, and then we got to experience all of those first. Everythings the first bath. The first normal diaper [00:14:00] change, like everything outside of the hospital with her and coming home. I had a little bit of anxiety.
I would ask for eat like every now and then. I think I was awake in the hospital for two weeks. I would ask him, I'd be like, what if it, what if the twins don't like me? Like, what if all of these things, what if they don't know me? Because I didn't get that skin to skin. I didn't get the moments to talk to them and them to hear my voice, but I did know that, you know, Gray's mom and my grandma.
Had them under control, everything taken care of, and I didn't have to worry about that from that aspect for those two weeks. But coming home, I was a nervous wreck. I was like, I can't wait to see the twins. I can't wait to see Izzy. I just get back to being a mom. But like Brady mentioned, I came home on a wound vac, so I was still attached to a little machine that made me feel very abnormal, which, and I was trying to come to terms with that in itself.
Like, I'm gonna be on this for maybe another month, maybe another two months. How do I navigate motherhood and how do I navigate feeling like myself while still being [00:15:00] connected to a machine? So I couldn't lift Izzy when I got home, but the twins were free game 'cause they were still kind of small and I was able to pick them up.
So in the physical, I wanted to touch them, hold them, do everything with them. And my family was like, you take it easy, you touch them and you hold them. You're not making bottles, you're not waking up at 3:00 AM You're not doing all of those things. We're here. And we can cover that for you. We want you to bond with them.
But I will not lie when I am, you know, expressing these feelings of, I didn't know if that instant form of connection would be there. Like I have with Izzy, when she was that young, like I was like, give me my baby. I wanna hold my baby. Don't no one touch her. But I would talk to Brady about it and I would say, is it weird that I have this feeling that I'm not as connected with him?
Is it this, is it that? And he would say everything, you know. Has happened in a very different way and your feelings of connection, they will grow in a very different way and they have, I've had to come to terms with the fact that [00:16:00] maybe I missed all of their firsts, but there are, there are other firsts that I didn't miss.
Like we just have to take them on their first outing because all the shots are done and we get to hang out each and every day and do silly little things and all of their smiles and their giggles. Just getting to know them after that first month of not knowing them. It feels so, I don't know. I don't even wanna say so much more special, but I'm so much more grateful to have these moments bloom, I think after that experience.
Todd Robertson: Pregnancy is difficult between the physical stress, the exhaustion, and the myriad of complications that can severely impact pregnancy expectation. Prenatal care is essential in assuring your safety during such a vulnerable time. Sometimes all it takes is knowing the right questions to ask here to discuss the frequency of clotting, complications during pregnancy, and what you can do to mitigate the risk.
This [00:17:00] is Dr. Caroline Cromwell from Mount Sinai Hospital in New York City.
Caroline Cromwell: My name is Caroline Cromwell. I'm an associate professor in hematology at the Mount Sinai Icahn School of Medicine in New York, and I specialize in what we call non-malignant hematology, women's health, bleeding and clotting disorders.
Well, I think there's a few different ways we can sort of look at that and understand that question and the information. So just at baseline, pregnant women compared to non-pregnant women are about five times more likely. To suffer from some sort of blood clot. And we also have to recognize that blood clotting, it doesn't necessarily also just mean a clot in the leg or lungs.
It could unfortunately mean other things like, um, a stroke or having miscarriages re currently without any other clear reason. So all of those things can fall under the umbrella of clots or clotting complications. [00:18:00] On top of it though, I would say that we have to recognize that. Clotting in pregnancy is one of the highest reasons for maternal death, and the rates in the US are actually really quite high compared to other countries.
I think it would start, first of all, involving, you know, your OB GYN in this conversation, knowing. If you can. It's hard. I don't know my family history too well, you know, we don't, sometimes we don't know. But if there's any family history there that puts you at risk talking about any medical conditions you might come into pregnancy with and what's the best way to deal with them during the pregnancy and do they put you at risk for blood clots?
It does start with just awareness, so that. This is a risk that this can happen to you. That's honestly sort of the first step and why I'm so glad we can have messaging like this. 'cause coming in, knowing and having that conversation, things during the [00:19:00] pregnancy, kind of practical things or staying hydrated, keeping active, moving, taking care of other medical conditions.
Those are some of the things you can do during pregnancy to help yourself. And then as the pregnancy progresses. If you are put on bed rests, that's another risk factor and another conversation to have with your doctor about how do I protect myself? Cesarean section is another risk factor. So how are you protected afterwards?
Even if you're not a risk, do you need any extra blood thinning after a cesarean section when it's safe? So. Those are all types of things that we can do during pregnancy. And if women had ever had a blood clot in their paths, especially associated with oral contraception, you know they need to share that with their doctor 'cause right.
Any hormone surge in the body is associated with an increased risk of blood clots. In general, African Americans are thought to be at higher risk of [00:20:00] blood clots overall and during pregnancy. Black women are. Three times more likely than why it's to die from sort of a pregnancy associated complication.
It really seems that there's a lot of reasons behind that. Some of it is access to care, right? The access to good care. The earlier you start with all of your prenatal care, the lower risk you are, we have to recognize that there are social determinants of health, prior medical issues. That could be affecting a person such as lupus Sickle cell trait also increases our risk.
And then institutional bias and racism also play a part in recognition of symptoms and treatment. So we have to try to address all of those things to really move the needle and make a change in this. So advocacy is part of it, A lot of which Leslie is involved in and [00:21:00] awareness. And that's on patients, people, and the providers recognizing the barriers to care and what we can do to really help our patients get the best care and be listened to.
Leslie Lake: Here I am crying. You should be the one crying. You know, it's what could have happened. It's really scary when you think about it. What could have happened? And I keep playing in my head. How preventable a lot of this is. If people are actually aware of it, and sharing your story with people will make, not just new moms and new moms to be aware, but also their partners, their husbands, anybody who's involved in the birthing process to make them aware about blood clots.
You know, two things. One is I'm curious, did anybody really ever talk to you about blood clots in pregnancy?
Brady Walker: In the OB appointments and earlier's memory is still messed up. They would [00:22:00] mention like, you know, you have a twin pregnancy, so you're at higher risk of. And then they would just go down to the side.
Yeah, yeah. Blood clots, this, that, this. But they never like in depth what that could mean. So it's like we're going into this birth and it's supposed to be a joyous moment, and then a blood clot turned it into a nightmare. But we don't even think that blood clots could kill somebody or she could lose her life, or she could be in the ICU on a ventilator for nine days.
So it was kind of like. Glossed over for sure.
Leslie Lake: And unfortunately that happens. And I think Alea and I were talking about this, blood clots are a leading cause of maternal mortality in this country. You think about it, we're in the United States, right? Like we are supposed to have the best healthcare in the world, and for black women it's even higher.
I think it's like the third leading cause of, um, maternal mortality in the for black women. And it's just so unacceptable. And I feel like you and us, like we have an [00:23:00] obligation now to share these stories, to share your story because it will make a difference in people's lives. So you're a team and as you think about this, I'd really love to get each one of you, your individual view on how you think about.
Wanting to share this and why you're doing this 'cause you're coming at it the same but different. You know, the same but different and different. People are gonna listen to you guys differently, but hopefully hear a very, you know, common, common message. So I'll let whoever wants to go first, go first and, and kind of share.
And you guys are such a beautiful family and the babies are so beautiful and. It's just, uh, I mean, it just, it breaks my heart that you had to go through this, but I'm so happy that you were. Okay. What would you say to people? You have a platform, you have an opportunity to, to talk to people about what you have experienced and, you know, [00:24:00] to educate people about why it's important to know about blood clots and how you're thinking about your messaging.
Each one of you, uh, maybe a little bit differently, but coming to the same point, which is to save lives, of course.
Aaliyah Walker: So I'll definitely say that Brady is the more technical of us in the couple. When I talk about it and I share from my perspective, I think what I center, um, mainly because he was the center of it, but what I center when I talk about it is having someone.
Who is there. It doesn't matter if it's your husband, it doesn't matter if it's your boyfriend, it doesn't matter if it's a friend, but have someone really intertwined into your pregnancy, the process, because without Brady being there and being able to have the awareness to say, okay, I know that Aaliyah is going to hear these words, and she's gonna process 'em immediately, and they'll fly out of her head, so I'm gonna be the one to process them and hold them.
A lot of the things I would, obviously, I wouldn't have been there to know. I wouldn't have had. [00:25:00] You know, anyone to fill me in, in the way that he filled me in. But to have someone be there as an advocate for you, even through our initial pregnancy, we went over that time and time again, I would tell him that these are the things that I have decided.
These are the things that we have decided as a couple that we want. So please, if I'm not conscious, if I'm experiencing too much pain, all of these things, I would ask him, you know, be the person that I know you are and just advocate for me. And in this case, he really had to do that without me probing him or prodding him.
And he did amazing. But the reason and the, the why for me of sharing the story and the way that I do is so that people know that you have a community. And if you do have that community, choose someone or choose everyone and lean on them. Because without my person in the situation, I wouldn't, I very highly doubt that I'd be here right now.
Leslie Lake: Yeah. That's beautiful.
Brady Walker: Yeah, and from my standpoint, I think it's just, uh. I approach it from like a advocacy [00:26:00] standpoint, like we all have, in my case, it happened to my wife and during a pregnancy, like we all have women in our lives, whether it's our wives or sister. Uh, our daughters. Like, I'm asking questions now for when my daughters get older.
I'm asking doctors like, what's it look out for? But I think being a strong advocate and knowing that blood clots are not. Just a thing that happens, but it's truly something that could threaten your lives and what to look out for in those situations. My mom just had surgery yesterday and I'm like, before you go into the surgery, like ask these doctors this, this, this, this, this, like what you can do to reduce blood clots after the surgery, what you could look out for to make sure the surgery goes safely and there's no blood clots that like move during the surgery, which is exactly what happened to Aaliyah.
And they tell you like the warning signs to look out for, like redness, tenderness, swelling in the legs, but Aaliyah didn't have any of those things. What else can we [00:27:00] do to learn about the risks or the signs that, you know, you have something that's invisible to us, like we can't look at Aaliyah's legs and see any swelling, but she clearly had a blood clot that went missed.
And why is that and how can we prevent that from happening? So just trying to advocate and ask questions. Honestly, I'm a big question asker, like, why are women not having ultrasounds done in their legs before they go into a C-section to see, Hey, is there any blood clots that may move during surgery? And how can we prevent that from happening because it's something that they did after the fact and the ultrasound took 30 minutes to an hour.
Why is that not something that could be done before?
Leslie Lake: Yeah, no, great answer. And whoever's having surgery needs to be aware. Uh, just to circle back on something you said, did you say it was your mom that had surgery?
Brady Walker: Yes. She had a shoulder surgery [00:28:00] yesterday.
Leslie Lake: So you're actually at risk for a blood clot up to 90 days when you leave the hospital.
They don't tell you this? Yeah, they don't tell you about that. They don't tell you about pregnancy. I mean, there's just, there's just such a lack of. Clinical awareness and sharing with patients about something that is just so preventable, so well, we're appreciative of you guys taking all of your time and sharing it with us.
Your stories are gonna save lives because people are gonna be made aware of this, and that's the most important advocating that we can do is to pay it forward and share this information. And Leah, I know you. Think that you missed out maybe on some stuff with your babies, but I gotta tell you, seeing you here today with them, it looks pretty good.
Thank you. Pretty beautiful. So I have a question for you guys. How'd you meet?
Aaliyah Walker: That's, you're such a, you're such a
Leslie Lake: team.
Aaliyah Walker: So we met in [00:29:00] college, uh, freshman year. We had the most random class, an elective that we built. Elected to take.
Brady Walker: Yeah. It was called, uh, Arab Uprisings in the Middle East.
Aaliyah Walker: It was a
Brady Walker: seminar class that we had to take as freshmen.
Aaliyah Walker: Yep. Um, and then we had just stayed as friends most of our college career. And then right before we graduated, we kind of reconnected. Um. And decided, I think this would be great. We should probably dig
Leslie Lake: well. You seem like old souls together, like you were just meant to be. So Ilea and Brady and Little Babies.
And Izzy, uh, wanna say thank you very much for joining us here today. I'm sure it's not easy to share this story, but it's hugely powerful and impactful. And I know we've talked about this before, but this truly will save lives and we are forever indebted to you for sharing your story with us.
Brady Walker: Thank you so much.
Aaliyah Walker: Yeah, it's been a pleasure to be here, and it's an amazing [00:30:00] opportunity to share and like you said, to contribute to the conversation.
Leslie Lake: We want to thank Aaliyah and Brady one more time for sharing their experience with us today. A special thank you to the exquisite Dr. Caroline Cromwell for her insight and expertise.
Thank you for joining us on another episode of Taking a Breath. For more information on risk prevention and community, please visit stop the clot.org.
Todd Robertson: We know the patient because we are the patient. Together with listeners like you, we can collectively stop the clot.
Don Shafer: For more information, visit stop the clot.org.
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