A Patient’s Story Can Become A Lifeline For Someone Else

A chart note can change your life in seconds, even when it’s wrong. I’m joined by registered nurse, DNP candidate, and founder Rachelle Dumas, who knows patient safety from both sides of the bed. After nine pregnancy losses, she finally welcomes her son, then later wakes up with sudden vision loss and stroke symptoms and gets dismissed in the ER. What follows is a painful look at how misdiagnosis, delayed testing, and “you’re fine” thinking can spiral into real harm, especially for Black women navigating maternal health and emergency care.

We also get specific about the tools and systems shaping care right now. Rachelle explains why informatics and AI in healthcare can either humanize the experience or distance us from it, depending on how carefully we build and use it. She shares a terrifying moment where a post-surgery note mentioned “three aneurysms” and nobody returned calls for a week, highlighting how documentation errors and weak follow-up create avoidable fear, extra costs, and dangerous delays.

From that gap, she creates HERD (Human Enabled AI Reporting and Documentation), a patient advocacy app designed to help patients and caregivers document concerns, find the right escalation path, and report harm while it’s happening. We also talk about pregnancy loss support, why language matters, how resource gaps leave families isolated, and what “moving forward” after medical trauma looks like when you’re still healing.

If you want a grounded conversation on patient advocacy, medical gaslighting, misdiagnosis, Black maternal health, and responsible AI, press play. Subscribe, share this with someone who needs it, and leave a review with the one change you want healthcare to make next.

Transcript

Recording Started

SPEAKER_00 0:10

Good day, everyone, and thank you so much for once again joining in with speaking with Sandra L. The patient experience. We're in April, and April is a good month. It's a good month for two reasons. One, we've made it well, well, actually, we're into the fourth month of the year. Well, it just I was telling my husband just earlier today, it's like I just woke up and it's already April. So this month is fast, it's fast, going fast. It's going fast, but that's okay. Because while it's going fast, we at the Johns Media Health Foundation have our finger on a pulse of a patient experience. We want patients to understand and to know that they're not going through these changes that or obstacles and challenges to go through. They're not going through it alone. There are others that are going through the same thing. And what I try to do with speaking with Sandra L is to give all patients hope, to let patients see that no matter what you're going through, no matter how difficult and how hard the times are and how challenging you may be having when you're going through the healthcare system, that there's always someone around that you can call an accountability partner that you can that can tell you, no, keep going. We got you, keep going. And today's show, we have one of those people who just keep going. She says it to herself, but not only that, from what I've been told by her earlier, her board members of both her nonprofits are simply amazing. They are impeccable. And I know she is like, okay, but but I had to say it because with nonprofits, it's hard when we don't have a board that does not understand, or we have a board that's stagnated and that's not moving with us. It's hard for us to get our very important, you know, topics that we're covering. It's hard for us to get the help that we need. So for her boards, for both her organizations, I say thank you, thank you, thank you. On behalf of all the patients that need all of what she has to offer and more, we say thank you. And please continue to keep enforcing her getting harassed. Her saying yes to what she can say yes to and no to what she can't say, what she can't do. And thank you so much for you know empowering her and encouraging her that yeah, you can put that in. That's just, you know, that's something like you can fit that in. That's not a whole day experience. So I say thank you so much. Once again, on behalf of Many Health Foundation, on behalf of Tom's Medi Health Foundation, but most importantly, on behalf of the patients who need to hear her encouraging words so that they'll know, yes, there is light at the end of the rainbow. So once again, this is April. We are celebrating Minority Health Month. We are actually also, there's also a week within Minority Health Month where we celebrate maternal health week. And with that, we celebrate Black mothers. And so with that, I say thank you so much. Um, Ms. Rachel Dumas, for spending some time with us, sharing us, sharing with us what you are doing and what you're working on.

SPEAKER_02 3:35

Yes, hi everyone. I'm Rachelle Dumas. I am a registered nurse, I am also um a mom of a to a potbelly two-year-old or three-year-old toddler. Um, I'm trying to age him backwards um because I'm just so safe. But um, I also am the nonprofit founder of A Light After Nine, which is a nonprofit organization that helps moms navigate in their village navigate difficult pregnancy journeys. And I started that after having nine pregnancy losses myself uh before finally having my now three-year-old baby. And then later on, I woke up with complete vision loss six months later and stroke symptoms. I went to the emergency room and was misdiagnosed with a stomach bug after uh being dismissed. Um, so I went to a different ER and after literally months of waking up with no vision and and all these stroke symptoms, I was diagnosed with a rare brain disease called idiopathic intracranial hypertension, which later led to two brain surgeries about eight months ago.

SPEAKER_00 4:38

Thank you so much for giving us that background. So, you see, when you're listening to today's conversation, you are going to be listening to someone who very easily could have said, I give up. Life is you know, life is happening, and I'm not gonna keep pushing forward with this. But she decided to turn that hourglass the other way, and so she decided to fill it. And it's not empty at any time soon. My first my first question to you is your journey includes nine pregnancy losses and a life-threatening neurological misdiagnosis, which you just stated. How did those experiences shape the way you see patient safety and the gaps that still exist in our healthcare system?

SPEAKER_02 5:26

So, as a nurse, I didn't realize how severe the gaps were in patient safety. As I'm very confessionate nurse, I definitely treated every patient and their family like they were my own. And uh I took my job very seriously. I was an advocate for every patient, as I typically worked in critical care, and patients typically couldn't advocate for themselves because they were intubated, they were on life support. So um, it was second nature for me. So when I started my pregnancy journey, I realized very quickly that when you're on the other side, and even if you have the education and the experience and the credentials as a healthcare professional, it does not matter. You know, people still dismiss me. It led to nine pregnancy losses. There were times I had to literally fly from Atlanta, the city, to Dallas to save a baby after being dismissed. Um, it was so much. It was so much. And I realized very quickly that not only are patients being dismissed, but black women are being dismissed at a more alarming rate and it's costing us our lives. And that experience only got worse once I had a neurological issue where I went to the ER and told the doctor, I can't see this is acute vision loss, these are stroke symptoms. And even with a neuro IC background from a comprehensive stroke center, which means I know myself, you know, we know we know the center of care is to do a CT scan in that instance. So to be dismissed and um potentially have my life at risk because those time-sensitive treatments were going out the window because my assessment was stalled because of the dismissal. I realized this is a huge problem. And I said, I need to do something about this.

SPEAKER_00 7:15

You know what? And I want to actually say something that brought that you brought up that many people don't realize, and a lot of patients unfortunately say, That's my doctor. And so we put doctors, and doctors do deserve, doctors, clinicians do deserve to, you know, get a special placement when it comes to our medical health, but we have to recognize, realize, and understand that they're humans. They are so the same thing we suffer as patients that don't have a clinical background, they're going through it as much. And they're going through it at a higher rate because they know that there's something wrong.

SPEAKER_02 8:02

Yeah, so we are clinicians because I am a clinician, I'm a registered nurse. But at the same time, we have to understand that our patients are experts of their bodies, and we're experts within our field in our own right, right? So when a patient comes in and says, I can't see, and I'm having uh weakness on one side of the body, and all these things, and this is not the norm for me. We need to pay attention. We we need to be able to turn off our biases, uh, and whatever other issues that are causing a gap between our patients getting adequate care, us listening, us believing them, and delivering um a proper assessment and diagnosis and treatment so that they can get the treatment that they need.

SPEAKER_00 8:56

Thank you so much for stating that. Now, my next question to you is this you have an organization, the organization is HERD. It's all about helping patients and caregivers navigate health care in real time.

SPEAKER_02 9:08

Absolutely.

SPEAKER_00 9:09

What movement or pattern made you realize this kind of platform wasn't just helpful but was urgently necessary? But before I actually have you answer that, is HERD an acronym for another word, or is is there something, a meaning behind the word HERD?

SPEAKER_02 9:29

Yeah, so my patient advocacy app is called HERD. Stands for Human Enabled AI Reporting and Documentation. That's what it's saying for. Uh, I named it that because all patients have the right to be heard within their healthcare journey. And I realized through my own personal experience that it wasn't happening. In order for me to survive the last literally eight years in and out of the hospital at this point, uh, that's combining my pregnancy journey and my neurological journey. I had to do so much that and have so many resources use so many resources that other patients didn't have access to. For instance, being able to backtrack to those who I used to work with, neurologists, neurosurgeons. Um, I talked to literally seven neuro uh providers while I was in the hospital. And I also spoke the jargon. So I was able to say, hey, let's let's do a lumbar puncture. Uh, you know, hey, I think my intracranial pressure was high. I saw I had a left transverse diagnosis uh stenosis, let's try this treatment. You know, I was able to speak that jargon that most patients wouldn't be able to. I also, because I've been in school for so long, I just I finished my master's degree last April 30th. I um and I started my doctorate degree that August. I was always already in the mindset of research. So I was able to research and find a study for IIH, my brain disease, and it showed that GLP1s decreases intracranial pressure within the first 12 to 24 hours. And at the three-month mark, people were off of their medications that they needed. They didn't need uh additional surgeries, the mortality rate decreased. So I brought that back to my providers and say, Let's put me on this medication. Can you order it? And that's what prevented me from having open brain surgery, a VP shunt. So I took all of that and put into AB plus more to help patients advocate for themselves and caregivers advocate on behalf of their family members as well. But it was through my experience and even starting a company where I said when I where I found out that 250,000 patients die a year from misdiagnosis, 7.4 million people are misdiagnosed a year, is causing us$100 billion a year in healthcare costs. Misdiagnosis is, and it's even causing our employers, the people we work for,$575 billion a year because of absenteeism and because of decreased productivity. So this is a huge problem.

SPEAKER_00 12:16

You you don't you might have to tell me, you don't have to tell me I totally agree with you, and that's actually why in my last book that I wrote, um, that's actually why I addressed the misdiagnosis, the misdiagnosis, the undiagnosis, especially in our community. And it's another reason why, mainly the main reason why I actually developed the uh Vass High Learning Lab, which is a digital healthcare platform, because like you, I saw that there's a big gap. And I saw that a lot of times what that gap was coming from was because in our community, and when I say our community, I speak of both women and color. In our community, we're not educated. We're told what we we're told the media tells us what the media wants us to know. But we're not educated. A lot of times we don't have, you know, we're we're a woman, we're single, even if we're married a lot of times. We're so busy taking care of our kids and our spouses that we don't take care of ourselves. So in taking care of ourselves, we need to actually develop that time where we're getting educated on what could happen. That's another reason why every two years we do the we do a biannual unseen health diagnosis conference because IIH, who ever heard of IIH, right? I mean, probably who heard of it. You know, one of my cohorts, Tanya, I had, you know, she came and spoke on IIH, and there were people that were sitting in the audience and were like, well, I have them symptoms. And I'm like, are you telling your doctor?

unknown 13:57

Right.

SPEAKER_00 13:57

And their response was no. I'm like, so what are they doing for you? Like, are you just taking medication just to be taking it? Like, how helpful is that for you? Right? Doctors are not mind readers. None of us are mind readers. So, as patients, we have a responsibility to ourselves to be open and honest with our doctors, to have those communications that need to be had so that we can find out like what's going on, what's wrong. Knowing our family health history, even if we're adopted, our cultural history is our family history. So we have to start having those conversations. So thank you so much for what you just said because coming from, you know, I'm coming from the patient side, but without that clinical training. I've had the clinical training because I've been in healthcare for 35 years, but it's been a semi-quasi-clinical training. You, however, have earned your clinical degree. You actually are a patient, so you're coming at it fully trained on both sides. So, you know, like you just stated, someone says stenosis, and you're like, okay, well, what is stenosis, right? And you might be going to look up the word using the wrong online presence to see what is stenosis. And normally when you see stenosis, you'll see it and it'll give you uh um, it'll give you a fuller definition of what stenosis is, especially if you're using AI. So we have to stop and say, are we using it correctly? And if not, how do we train to use it correctly? So I thank you so much for what you're doing with Herd. And is Herd a nonprofit or is it a for-profit?

SPEAKER_02 15:42

It's a for-profit.

SPEAKER_00 15:43

Okay. And is it it's based in Atlanta, correct?

SPEAKER_02 15:48

Yes, but you're able to download the app um next starting uh next month anywhere in the United States. And we hope to expand national internationally as well.

SPEAKER_00 16:00

Okay, very, very good. Because it's a health is not confined, you know, as I tell people, I'm like, my product was developed in Chicago because that's where I live. But I realize that it's not a Chicago healthcare issues, maternal healthcare issues, you know, neurological healthcare issues, diabetes, chronic kidney disease, those are not subject to where a person lives. Those are international problems and they need to be addressed on an international level. So I'm so glad to hear that your product will also be available on an international as an international um item that could be purchased. As a nurse, informatist, and a DNP candidate, and so I have to stop myself and say, because people will say, well, what the H is a DNP? Doctor and nurse practitioner candidate. You sit at the intersection of data technology and lived experience. How do you believe information, informatics can humanize care rather than distance us from it?

SPEAKER_02 17:05

Yeah, so yes, doctorate of nursing practice uh is what I will be earning next December. Uh, if I can keep my head above water and stay on track. Uh, and informatics, so tech is the big issue and saving grace in healthcare. And I say both of them because there's advantages and disadvantages, right? Uh, it could be used incorrectly. Uh it's not perfect by any means, yet there is a big risk in its imperfections, um, considering we're dealing with human lives. So if used correctly, it could lead to better clinical outcomes, right? Um, it can make our work so faster, more efficient. Um, on the patient side of it, we're able to communicate better with our providers, we're able to advocate for ourselves better, we're able to understand our healthcare information and data that we have accessible to us. There's a lot of break that can come from it, but with that, there's a lot of harm. If we use it incorrectly, there's misdiagnosis at risk, so delayed treatment or wrong treatment and misses, you know, um, that could lead and you know, unfortunately lead to death or significant harm to patients. Um, there's a lot that can go wrong. So when we are building these tools, such as her, which has an AI component as well, but other tools that we use in the hospital, like um like when a physician or a practitioner or clinician is uh ascribing to or dictating to a system, there can be errors if they mishear you, right? So, for example, um doing my neurological journey after my second, either my first or second, I can't remember brain surgery. I was reading over my surgeon's notes to see what happened during my procedure because I do that. I want to know what vein and artery you know you went through and how you got there and what you what you did and where you put the stand and all those things. And I discovered that he found three aneurysms, and one of them was uh pretty large that he dictated in uh uh in an area of the brain where aneurysms are really high risk for bursting, which is a medical emergency that could lead to death. And of course, I'm terrified out of my mind because no one told me this after surgery or while I was in the ICU. You know, I never heard of this. So I'm calling the office and they're being very rude, very dismissive. Uh, nobody's allowing me to talk to my surgeon or any other nurse practitioner who could possibly diagnose me because I need to talk to a doctor or a nurse practitioner or a PA who could possibly say, Yes, you do have aneurysms. You know, it took a week of me essentially losing my mind and preparing to possibly at any time die uh before I spoke with the surgeon. And as soon as he walked into the room, I said, Doc, what is it? What is going on with three aneurysms? Nobody told me this in the hospital. You didn't say this when I came out of the procedure. What's going on? And he's confused. He's like, There's no aneurysms. I said, You dictated or you documented three aneurysms that you found. He said, Pull it up, let me see. And he said, Wow, I do I do say that. I'm so sorry, but I don't think you have aneurysms. I said, Pull up the imaging. I don't need you to, you know, think I need you to know if I have an aneurysm. That's a big deal. So I literally watched him pull it up, and I'm looking for an aneurysm myself because at this point now I'm an expert. I didn't look up how what an aneurysm look like and all this stuff, and you know, and he's like, Yeah, there's no aneurysm here. That was probably a mistake. Casually, Sandra, casually, I'm over here planning my funeral, preparing my will, making sure my affairs are in order, and you casually just say there's no aneurysm. So things like that can also increase healthcare costs. Because what if, since I couldn't reach you for a week, I went to other doctors and got more imaging and insurance say I'm not covering that because you just had this done, and you know, so much could have come from that, including it impaired my mental health for a week. And those are the things that we have to be very mindful of, and that could be those downfalls of using tech at AI. Um, but when it's good, it it's really good.

SPEAKER_00 21:41

Yeah, I'm with you. You know, I tell people as, and that's actually why one of my courses that I offer is AI and healthcare, because we definitely need to be using it correctly. It's so much harm that can come out of it when we don't use it correctly. 100%. There's a doctor, I actually belong to this group is called AI 2030. And what AI 2030 does is it's a group that is is is put is put together. One of the main focuses of it is to make sure that AI is ethical and it's being used in ethical ways. And his name is Dr. Ferguson and Dr. Ferguson has created this program called AI in the exam room. So the AI in exam room from the provider side, AI in the exam room from the patient side and I think he's now working he might be finishing AI in the exam room from a nursing side. And he's actually a well-known physician that practices. And some of the things that he he addresses especially in the AI and exam room provider because I looked at both I looked at all three of them just to see you know what was going on. And some of the things that he's telling providers to do in reference to you know AI and exam room and when you're treating patients it to me it dawned on me like this is ethics. These doctors that are not following this are not owning up to their oath that they took that they would ethically treat all patients. But you dropping a ball and letting AI or another app run whatever it's running without actually going in and checking and seeing what's in the notes because he should have read those notes you know along with you or prior to you to make sure that what's in those notes are correctly being inputted. He shouldn't be you know they doctors shouldn't just be letting you know the system do what it does and then okay next week I'll go back and I'll talk to him. And then the doctor, you know, and then the officers have to be they have to understand that when a patient calls a patient is calling because they have concerns. Sometimes patients call and they have no concern they just want to talk to the doctor. That's what the that's what the patient portal is for that's what the that's what the portal is for for you to put your notes in there. Sadly there are some medical systems that are not that are now charging patients to use those portals. So I even have to back up from telling patients use your portal and send your doctor a note through the portal because I don't want them to get a bill and then be like well Sandra we listened to you and this is what we did and now we got to pay this bill that's not what I want to happen. So what the officers need to do and this is you know this is what they need to do is they need to be more sympathetic to the fact that you have a patient calling especially if you look in that patient's note and you see this patient had surgery last week. Send an email do something but make some kind of contact with that patient who's calling you right after they got dismissed because they have a concern about something that's going on with their health care. Because to your point Rachel what happens is your hospital loses star points your doctors can get when they go up for contract time with the medical you know with the insurance companies they got to answer for all the complaints that they are actually getting they got to answer for it. And if they don't answer for it financially they're taking a hit and it's not a$200 hit they're taking a hit. Why would you put your business in a point where you're going to keep getting hits because you don't have the time to answer the phone or do an email and you're not training anyone on your staff to be that go-to person, that concierge person that can walk that person through okay they have a certain kind of surgery they got two weeks or whatever however many times they have a follow-up care that we need to be responding to them within 24 to 48 hours. It's common sense I mean make it make sense as far as why they're not doing this and putting their own you know revenue in jeopardy when they're not answering no when they're not available.

SPEAKER_02 26:24

Because there's no way you should have been waiting a week yeah for them to just casually say oh you know what you did there's nothing wrong with you I message I call every day um I talked to uh medical assistants who can diagnose or anything like that um they would say hey a nurse practitioner call you back or I have the surgeon call you back or there was one time they said um it was like in the middle of the day in the middle of the week they said there are no healthcare providers here to help you I said none there's none in the office y'all won't see any patients today yeah we have patients and I was like so no nurse practitioner no PA no surgeon no MD no DO nobody's in the office you know so I I try my due diligence and um it was just a a very scary time even as a healthcare provider and sometimes I feel like it's even scarier for us because we know sometimes and that's what I was saying earlier it's scarier for you guys you know it's it's scarier for the providers that know because providers are gonna you know you're gonna look you're gonna like let me look at my notes and see what my notes say right you're gonna I'm like to I'm gonna read it right I'm about to read it and I know what it means I know what it means because I used to um work in their ICU and patients like me I would take care of them at the surgery they come to the ICU and I monitor them I get report from the surgical team to see what happened and ask questions you know for aneurysms hypertension is the enemy of an aneurysm that can cause it to burst and post op he allowed my blood pressure to go to the one 180s over 100 I it could have burst then you know and um Gunda didn't go that high but that was a high risk for it to to rupture and it was just scary it was just very and then you know and this is the thing right so you and I could look at a medical record right a medical note and we can understand what those big words are right we know what the words are that they're putting in these these these um comments right and a patient that's not a lay patient that has no medical degree no clinical degree no nothing will look at those notes and they automatically their fear factor automatically goes through the roof when they see certain words because they've not they don't have that education and that's why it's extremely important from a patient side and I don't care who you are as a patient you could be the doctor himself and be a patient right whoever it is it's important for us to know that you have follow-up days that are attached to all surgeries within those follow-up days we as patients should be able to call your office and we should be able to get an answer from someone that is that someone that is knowledgeable and someone that has the skill and the level experience to tell us what it is we need to know.

SPEAKER_00 29:37

We don't need to be waiting a week we don't we don't even need to be waiting 72 hours for an answer and you know it might come down to well I don't have money to pay anybody to do that. Okay so then cross-train somebody on your staff do it cross-train something and we know um even in uh recent in past times but we know of some doctors who have died in childbirth um you know it's it's bad the dismissal is bad and I typically see those victims of the healthcare system be black women exactly all the time they don't believe us they don't care about our credentials and instead of using our expertise in the field to help steer our care plan direction is seen as a threat and it shouldn't be and you you know what when you say you've seen it happen I lost two sisters that I shouldn't have lost and both of them one of them was just downright and out gaslighted the other one was seeing a doctor that knew he wasn't trained to handle her health condition but yet continued to actually see her as a patient instead of referring her to a specialist that was trained to handle her situation which once again caused both of them to lose their lives so you know and they're they were highly educated women but you know I hate to say it because I don't like bringing race into things but it's happening to us black women more and more we're hearing it we're seeing it I got an email the research is there.

SPEAKER_02 31:22

Yeah you know what and I was going to say that I got an email last week last week maybe two weeks ago from one of my board members about the young lady that was in Florida that had doulas in her office had doula's in the hospital with her and the doctor would not come into the hospital room with her she was in labor would not come into the hospital room with her until the doulas left oh that was in Georgia that was actually at PM yeah what I'm sorry it was in Georgia it was Pont Henry and it's funny at that same weekend I was in the hospital being dismissed at the exact same hospital I actually had a postcoviral about my experience there uh they were very dismissive they kept me uh for days without giving me an MRI that I needed it was the hospital um has a reputation and I and I see it after I posted my story after they posted there so many people are under my comments if you look on TikTok or on my Instagram where I posted that video about their experience at that hospital.

SPEAKER_00 32:29

Yeah and you know what and this is the thing so I went and I did and I'll be posting on it throughout the month of um 12 the month of April I went and I went to YouTube and I just wanted to see what was out there. There were so many issues jumped coming back to me that these things were happening I was like okay so why are we not talking more about this where people can you know cause a patient uprising I call for a patient uprising because until we uprise and until we make it known that we are patients and we are humans it's gonna keep happening it bothers me when I'm talking to a patient and they're going through something that they shouldn't be going through and I ask them well what did you do? And they tell me they did nothing. Right right I'm like okay so how do you intend right how do you intend for that practice to stop going to happen to them I'm like there's a lot that happens if you let people if you let the right people know they have doctors have people that they have to report to as well but if you're letting this happen and you're just going along with it and you're just not saying anything we're not gonna get the help that we need. So when things happen we have to address them we have to bring them up we have to talk about those things and that's why I'm really on this big push let's get our patients educated empowered and engaged so that some of this foolish stuff that we're going through right now and patients of all ages colors whatever but we're going through right now we can stop going through it.

SPEAKER_02 34:15

Absolutely and that's one of the things that her does it literally within 60 seconds you can escalate harm. So it has what's called an API which is a database that pulls the advocacy contacts from any organization that you're in and you can literally take all AI takes all the data that you put into the app about different cases that you build um and your documentation on those cases and it literally sends can send an email within 30 60 seconds sometimes less uh it also has a feature where you can file a complaint and it'll show you all the places you can file a complaint when to file it how could how to file it how long it'll take to hear a response and when to do those things because we do want to teach people how to uh go up the chain of command for escalation uh but that's one of the big um features of the app that I was very adamant about adding because it's just very difficult out here for a patient to advocate. When I was in the hospital um a a month or so ago as I passed out of the airport I was being dismissed in the hospital and things like that. I literally was looking around the room to see how to escalate harm or to file a report there was nothing and there should be an almsbudsman number in that room and it was nothing in that room and granted I know how to file a complaint and escalate harm and things like that but most patients do not they do not and typically you aren't really asked about it unless it's like three days later you get a survey asking how your stay went but it's too late then because there's no real time um uh there's no real time mechanism to address that issue if it's three days later or a clinician puts in an incident report but if I'm the clinician that's ignoring you and I'm the clinician that's dismissive of whatever issue you have on going on then that incident report is probably not going to get filed. So you're essentially there suffering in silence.

SPEAKER_00 36:19

Exactly and that's exactly why once again with your course with the herd and with my course with the Vast Child Learning Lab where patients understand these things and know these things I tell people all of the time speak up speak loud and speak often and so when I say speak loud people like well you don't want to be too loud no and I'm saying this to all patients you don't want to be loud boisterous obnoxious there are ways that you can speak and it's above a whisper that you're not yelling and you're not screaming but you're speaking to the matters that mean the most to you which is your care you want the best care. You're not saying anything not using your voice is not going to help you. You know and there was a point in time where patients could say I didn't know and I tell people now and I'm gonna stress this even more now that I know what exactly your app does stop telling me you don't know because you have been told you have tools that you could use so for you to come to me and say well Sandra I didn't know as a mute point to me like make it make sense to me that you have these programs that you could use and you're not using them. You have this video that's telling you that hey there's some there's some things and resources and stuff that you can do as far as a patient to get this pushed through to get your I you know get your points across so you can get the best health care. Nobody should be laying in a hospital I went to an emergency room a couple of years ago and there was a young lady on the floor Rachel I kid you not she was on a floor scrawled out nobody was paying attention to this young lady nobody I went over there and tapped her and asked her was she okay and she muttered yes but I could tell she wasn't because why are you sprawled out on the emergency room floor? Right right but I can't help you if you don't tell me yeah you need help I gotta go with what you say I wouldn't have been able to personally help you but I would have been able to go get you some help but you're not saying anything patients come on now I mean this is the experience but we have rights and responsibilities that we need to be following if we want the best health care. And with the two of us are sitting here telling you about two very important apps that you have at your fingertips that you really need to be using to get yourself educated on the correct way to get the best health care. I'm off my my soapbox because I'm going forever when it comes down to that my next question is you found a light after nine to support women through pregnancy loss whether you wish clinicians families and communities understood about the emotional and physical realities of recurrent loss that I just want clinicians to be more mindful of their language and there has to be a mechanism where we are aware other than being able to look through the charts but be aware of an a lost parent uh or a lost family um it's not just one parent it's it's a family because there needs to be more empathy sensitivity around the conversations that are being had in the aftermath of a loss uh during my second pregnancy I had twins I was in the ER with pain and bleeding I went to my OB I was in the ER eight times I went to my OB numerous times and they kept sending me home saying nothing was wrong.

SPEAKER_02 40:00

Well I lost my first baby the first twin at about 13 weeks and three days I felt great my symptoms subsided I thought okay well at least help my baby it'll be fine but then at 15 weeks and three days I woke up wet went to the bathroom and the baby fell out of me into the toilet and I went to the emergency room the same one I've been to about eight times and they have my records right it's the same emergency room they have Epic uh which is my chart on on the on the patient patient end so they're aware of who I am but I went in there and the doctor asked what's wrong and why am I here? Granted it's 2020 nobody wants to be in the ER doing COVID right nobody ever wants to be in the ER but definitely not during that time and she asked what was going on I told her uh I was 15 weeks three days my baby just fell out of me in the toilet and she asked me how did you even know you were pregnant like what kind of question is that well because I've had multiple ultrasounds multiple pregnancy tests and like I just said the baby literally fell out into the toilet so I know I I was pregnant because of I actually caught my baby with my hand so there's that and she uh I said do you want to see a picture or something and she said yes so I showed her a picture of the baby in a in the toilet and she said oh that's a baby as if I would lie about like like I would lie about this and then she proceeded to take care of me so things like that can happen when when you have a lost parent I mean as a clinician you could have said okay I'm so sorry for the you know and then you said okay we're gonna do an ultrasound to make sure the rest of the pregnancy is out you know there's ways around that you know if you thought for some reason I was a mental health patient because I was crying hysterically granted that was warranted after I just lost a baby unexpectedly my second one after being dismissed for months you know um there's ways you could have gone about that that was more tactful and uh more just better for the patient you know thank you for that and I am so sorry that you actually had to go through that nine times before someone you know before you were able to conceive and now you have a healthy three-year-old son but they have to go through that nine times right and then you know you're looking forward to you know the baby and you're making plans for this is what we're gonna do and you're making all of these plans yeah and then you you lose a baby and there's no there there's no sympathy whatsoever.

SPEAKER_00 42:44

Sympathy empathy comes out the window and you know and you said it's the same hospital that you actually had that you just was discharged from just recently yeah but I want and I don't want you to mention the name of the hospital because this is not about let's bash the hospital system but this much I do know that this is not just happening to one hospital which is why I actually ask if you're going through these problems if something like this has happened to you please start talking about it please stop holding it because you hold that inside that it's gonna eat at you for the rest of your life Rachel's a young lady that you know she lost these babies these babies will be with her for the rest of her life thankfully she's been blessed to have an excellent support system around her that's been there for her to help her through those you know days when she's like I can't do this and I can't go on and not be able to face the future that have pushed her and helped her and said yes you can and we're here for you. We're surrounding you we're gonna love on you and we're gonna make sure that you're okay. But there are women today that are going through similar challenges and changes that have no One and you're feeling like you're alone, nobody's gonna understand you. You know, you're alone, but you're not alone. You really are not alone. You're alone because you want to be alone, but you're not alone because there's no one out here that has been through what you've been through, and no one out here that can help you to say, hey, you know what? I know you what you've been through. Let me help you and give you some resources that can help you.

SPEAKER_02 44:28

Yeah, I don't think everybody knows about the resources. Um, because I have felt alone in my pregnancy journey, even if I'm surrounded by people, because nobody truly knows. Most people don't know what it's like to lose nine kids, you know. Um, and the first one is always a shock. You're not thinking that you're gonna go into your pregnancy with a loss, and then in the loss, you think, you know, you get some ultrasounds, gain some weight, eat some pickles and ice cream, and then you're going deliver a baby. You know, that's what people typically think, unless you have you're surrounded by people who have experienced it or you've had a loss. Now, when I was going through it, even as a nurse, I didn't I was not aware of all these resources, and there's a big gap in education when it comes to these clinics and uh even the hospital where you're not informed of resources. You know, not once can I recall a healthcare provider saying, Hey, do you want some therapy resources? You've had an enormous amount of grief, not once, even as I actively lost. Nobody assessed my SDOH, my social determinants of health. Nobody, nobody asked about emotional health, mental health, resources, all those things. Nobody said this, Andrew. So I understand those moms who feel alone because you're not always given the resources, and then in the midst of a crisis, the last thing you really want to do is go and do research about what resources are out there. So I hope that there is somebody who sees you uh doing that journey, if that is your journey, unfortunately. And I hope that you do have support who can uh say, Hey, I've heard of this, maybe you should try this. This is a free resource. This will be great. This helped me. I've actually been through this. You know, I hope that those moms and their their villages are reached because everybody doesn't have that ability to um to access those resources to help them out.

SPEAKER_00 46:25

Well, this is the thing. Prior to let's say your your prior to our organization and prior to your organization, right? Those resources weren't there. Those resources are now there. People need to actually start outreaching and saying, where can I find the resources at? We can actually offer you. I can take this for Medihelps and for Chomps. We can actually offer you those resources prior to anything happening. And if it does happen and you need help, you can reach out to us and say, hey, I need this resource. Where's this resource? Where can I find this resource? Because that's the whole reason why we actually exist as far as Chom's MediHelps Foundation to ensure that those resources are available. We got to get on the phone and call the resource ourselves and make sure those resources are available and give you the accurate and correct information. That's what we'll do. Because one thing we can't say is, because we already know it, right? We already know. We that, and when I say we, healthcare professionals that are working on this issue, we already know that the government's not gonna help us, the hospitals are not gonna help us. Many times they want to, they just don't have the resources to help. And a lot of our providers, I love them to death, but they don't have the resources or the time or the capacity to help, which is why nonprofits such as Chalms Media Health and other community-based organizations, we need to be utilized for this for the specialties that we have because there are resources. Now, what I will actually also say is this what needs to happen just in case something happens and you, you know, you find yourself in this situation. When you find out you're pregnant, just like I tell people when now, now's the time for you to get your POA, your HIPAA, your other documents, when you find out that you're pregnant, start a pregnancy library that has services that I may need to reach just in case, so that you find the emergency right beforehand, before you preconception. Yeah, right. Right. When you find out, even and even what you just said, preconception. If you're thinking about having a baby, you know, along with the crib and the baby shower and all this other stuff that we think about when we're pregnant, we need to start having a pre the sitting down and talking about preconception-wise, what do we need to have, right? So that should do at any point, because you were 13 weeks, which is what three months? So you were still young in your pregnancy. So before that happens, let's start proactivity, precaution, everything. Let's do it before we get to the point where we need it, because you are so right when you say the resources are not there because no, and it's they they're there, but they're just not known, right? So thank you for that. And then my last question to you is this you've transformed your personal losses into a platform that empowers thousands. What do you want listeners to understand the di about the difference between moving on and moving forward after medical trauma?

SPEAKER_02 49:54

Yes, it's difficult. Give yourself grace. That is a big one. Give yourself grace. I'm still in therapy every week from my medical trauma and other things, and it just takes a lot to turn pain into purpose. It's not easy. And I have people tell me all the time, like, uh, it's just so wonderful what you're doing, and things like that, but it's not easy, it is very difficult. Sometimes retelling your story over and over can be re-traumatizing and things like that. So always take care of your mental health. But also know that your story, despite of how small you think it is or insignificant you may feel like it is, it is bigger than you believe, than you can believe. It is going to help somebody if you are able to be heard and share your story and speak up. Uh, and I've seen people speak up about different things that's happened to them in the healthcare system, and it's led to legislation that has helped the masses, millions of people. So don't ever think that your story is not big enough, it's not moving enough, it's not dramatic enough. Tell your story, help others save other lives.

SPEAKER_00 50:58

Thank you so much for that. And you're so right. Tell your story. We all have your story. Tell your story. Someone's listening, someone's waiting for you to tell their story. They're hoping that you tell that story because then you're releasing your story, it's releasing that story from someone else that's feeling like I can't, there's no one that's gonna listen to me. I'm going through this myself because we're not. As patients, I don't care what disease you've been diagnosed with, what trauma, you know, as far as medical trauma and health care trauma that you're going through. You need to know that you're not in this alone. You really aren't. There are so many people that want to help you. We just need to know that you need to help. We're not, you know, I I know I'm not, and I don't, you know, encourage anybody on my team and Rachel. I know, you know, you may feel the same way. We're not going to force you to make that change. Because if we force you to make the change, or we force you to talk up, or we force you to do anything in your life better so that you can get good health care, it's only gonna be a fleeting moment. It makes a difference when you as a patient stand up and say, I'm not going through this anymore, and you make the changes, and I'm gonna get some help so that I can get my story out here. It's gonna make a difference when you, as a patient in your own health care journey, are control of your own health care journey, and you're saying, I'm not gonna do this, I'm gonna go get me some help. Someone's gonna listen to me until you know, just if you have to keep repeating it over and over. And Rachel, I so appreciate you because you are so right. You have to actually repeat your story numerous times and go through it numerous days. Because it's uh, you know, you losing one baby. I mean, that would have stayed with you for the rest of your life, but you lost nine. So I can only imagine, you know, wake me being you and waking up every morning and you know, having that with me, carrying that with me for the rest of my life. That that's a that's a pain that it's a sinking pain. It's a it's one of those pains that stick and it doesn't go anywhere because in real life it happened. So thank you so much for taking the time to explain your story. Thank you for doing you and being you, which is an amazing young lady. And you know, I wish you nothing but peace and blessings on everything you do with both school, but the IH and that handsome little boy of yours. I wish you nothing but the best. And before I leave, I want to remind everyone be kind always. It doesn't cost you not one red cent to be kind. And I say be kind always because you'll never know how you're helping someone with you being kind. You look at Rachel and you're like, well, she couldn't possibly be going through anything. You don't know what another person is going through. We just beg you to just be kind always, be be there for someone, um be kind always. One thing I do want to leave, and then being kind when it comes to maternal loss. Do not tell a patient that has lost a baby, whether it's the dad or the mom. Well, your baby died. You should be over that grief. I yeah. Please don't, because grief doesn't have a time frame, and it's and it really hurts someone for you to tell them you shouldn't be grieving anymore, because you need to let them grieve for as long as they want to grieve. You don't like them grieving like that, don't say nothing to them. Keep moving. That's as kind as you can be. Keep it moving. So thank you, Rachel, Rachel. I appreciate you and all the best to you.

SPEAKER_02 54:58

Thank you so much, Sandra. Thanks for having me.

SPEAKER_00 55:00

Thank you.