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Defying the Odds: Kenyatta Breaux-Coleman's Journey Through VOGM and Advocacy
Imagine discovering a life-threatening condition in your unborn child, only to witness them defy all odds and become a beacon of hope for families facing similar struggles. Join us on Koffee Chit Chat as we welcome Kenyatta Brooks Coleman, who shares her family's incredible and emotional journey with Vein of Galen Malformation (VOGM). You'll hear how Kenyatta's own health concerns during pregnancy led to a diagnosis that changed everything. Learn about the critical importance of advocating for thorough medical evaluations and trusting your instincts when it comes to maternal and fetal health.
We take you through the heart-wrenching and inspiring story of Denver, Kenyatta's daughter, who faced a large aneurysm that threatened her life before she was even born. The dedication of a multidisciplinary team, including specialists from New Orleans and Boston, played a pivotal role in her survival. Through faith, community support, and cutting-edge medical procedures, Denver's case captured significant media attention and highlighted the critical issues of Black maternal health advocacy and the importance of specialized medical care.
Finally, Kenyatta delves into her advocacy efforts for VOGM and other rare diseases. She discusses the challenges faced by parents, the need for systemic support, and the significance of spreading awareness through media and educational platforms. This episode is a testament to perseverance, faith, and the powerful impact of medical collaboration, offering valuable insights into the journey of caring for a medically fragile child. Don't miss this episode filled with hope, resilience, and the tireless fight for better healthcare outcomes.
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Hey y'all. Hey, it's your girl, paula. We are here with another exciting episode of Coffee Chit Chat. But before we get started you know how we do it let's shout out the coffee of the week. It's the Cafe Mocha. Make sure you grab one, you guys on today we have a very special guest on this episode. Her name is Kenyatta Brooks Coleman and she's a lover of Christ, a wife, a mother of four, she's a human resources professional career coach, mentor and she's a vain galen malformation and rare disease advocate. The acronym is V-O-G-M. She is going to discuss her daughter's Denver journey with this rare disease. Welcome to Coffee. Tic Tac, kenyatta.
Speaker 2:Yeah well, thank you so much for having me, paula. Wow, what an intro. I'm going to definitely have to try out that new coffee today, looking forward to that. Yes, thank you again so much for having me. I am honored to be here, and just here to answer any questions that you may have, or any questions that any of your listeners or viewers could benefit from regarding gain-of-gain malformation.
Speaker 1:Awesome. We are so excited to learn and to just kind of understand this rare disease, especially in an infant. So how's Debra doing first this rare, rare disease, especially in an infant.
Speaker 2:So how's Denver doing first? So Denver is doing amazing. She's your typical toddler. She, um, she has a little sass to her, she's very expressive, Um, and yeah, she is looking as far as her future is looking really bright. I mean she is exceeding expectations, exceeding milestones and I mean she's still continuing to wow the medical community.
Speaker 1:Awesome.
Speaker 2:That is so awesome.
Speaker 1:I follow you guys' journey. She's just a doll. I just absolutely love her. Thank you. Now can you tell the listeners exactly what is? I'm just using the acronym because we're retired military. Do you guys say VOGM or do you just say V-O-G-M?
Speaker 2:The.
Speaker 2:V-O-g-m the v-o-g-m. Yes, so those are v-o-g-m. It's an acronym for vein of valen malformation or vein of valen aneurysmal malformation, um. So basically what that is a v-o-g-m. This is a type of rare vessel abnormality, um in the brain, and it's usually developed within the first trimester. However, the majority of cases are diagnosed in utero, within the third trimester or, in some cases, after birth. So what happens with vein of valine malformations, or VOGM for short? There are misshapen arteries that connect directly to veins instead of connecting to capillaries. So when that happens, it causes this high pressure blood flow. So it causes the veins to increase or dilate in size almost like a balloon. So it's like an aneurysm, a large aneurysm on the brain. But with VOGM, with that high output or that high pressure blood flow, it could also lead to congestive heart failure, because the heart is now working in overtime, as well as the lungs, and it could also result into pulmonary hypertension.
Speaker 1:My goodness. So how did the doctors find it? Or how did you guys know something was wrong?
Speaker 2:Well, honestly, it started from a separate diagnosis. Believe it or not, this is actually. It's something that happened that we found out about by chance. So the story started with me having just this intense itching on my legs. I mean, when I tell you that the itching was so intense, I was literally scratching skin from my legs and this happened yes, this happened leading up to my birthday. So this is like the end of January Ended up notifying my physician, and whenever I contacted them initially and explained you know what was happening, I was told initially that, oh well, this could possibly be just pregnancy hormones.
Speaker 2:Your body is changing. But for me, something just didn't. That didn't settle well, because I've had three previous pregnancies and you know, I know my body. This is something that was totally different. I didn't change anything with my routine, no type of skin care products, none of that was changed. And then, all of a sudden, having these issues. So I was adamant about being seen. As a matter of fact, I requested to be seen that same day. Now, going back, two days prior was my birthday. Two days prior was my birthday and as a birthday gift to me, my husband actually booked the session for me to have the 3D, 4d ultrasound to see Denver for the first time. Now I was super excited about this and, yeah, had a chance, you know, had all of these really nice images of her, all of her really unique facial features, and so I was excited about that.
Speaker 2:But by that following Monday, like I said, that addiction was just so intense. It prompted me to call the doctor's office. So they ended up working me in, went to the appointment. They did the usual checkup. So they checked my bundle height. They inquired about any you know, any activity her basically monitoring her movements and things like that. Well, I have a history of having small babies. So when they did the fundal height check, they noticed that she was measuring small. Now, this wasn't alarming because, like I said, I have a history of having small babies. So that prompted them to want to do an ultrasound of having small babies. So that prompted them to want to do an ultrasound.
Speaker 2:The doctor explained to me before the ultrasound that she was scheduled lab work to address the itching. She basically wanted to make sure that the due date was aligned with what was projected based on that fundal height measurement. So go in for the ultrasound. And this is that 28 weeks Ultrasound came back flawless. I mean, she passed her biophysical, she was breathing well, she was looking good, everything checked out, fine. Well, ended up going in for the lab work a couple of days later. It was a couple of days later because I also had a glucose tolerance test scheduled that Wednesday. So I figured, hey, I'll just have everything done at the same time. So I ended up having a glucose test done, did the requested testing to address the itching, and the results came back. The glucose test was fine. I got the results that same week.
Speaker 2:But the results from the pitching where they checked my level, my liver, bowel levels, that came back the following week, so the mid part of the week, during my 29th week, and it was determined then that my bowel levels levels were elevated and they diagnosed me with intrahepatic polystasis of pregnancy. It's a condition that affects pregnant women and then it could cause intense itching. It's basically when the bowels levels are elevated and you can also have other complications and in rare cases it could lead to a stillbirth. It could lead to a stillbirth. So, considering those different risk factors, my doctor determined then that she would do weekly ultrasounds. So she said well, since we've already identified what's happening, I'll prescribe you, schedule you an ultrasound and we'll do ultrasounds every week and appointments every week, beginning next week, which was then the 30th week. So I go into the appointment on the 30th week thinking, hey, this is just going to be, like you know, a routine ultrasound, very much like what I've already had done in the past, already had done in the past. They explained that they do a biophysical, that you know they kind of monitor the baby a little bit and then, following the ultrasound, I would see my doctor. This was like a typical appointment for me. As a matter of fact, I called my husband, who was supposed to be present at that appointment, and told him. I said well, you know, you really don't have to come today, since we'll be seeing a baby every week anyway. I mean. So I was just thrilled about the idea of seeing her every week, not knowing that this particular appointment would just change the course of everything.
Speaker 2:So, doing the biophysical, the tech and I were having just general conversations and all of a sudden she got really, really quiet and at that moment it's like the room just stood still, like time stood still. Everything just changed and I knew, you know, I knew something wasn't right, without her even having to say something, but it was just that silence spoke volumes. At that time I did notice that she focused a lot on the baby's brain and her heart and when I inquired with her I said, well, you know, is everything okay? And her response was and this is the you know, the typical response that you know once I see the doctor following the ultrasound and she'll keep me updated with anything from that particular scan so, thinking, okay, you know, I literally just had an ultrasound two weeks ago, you know, and ended up seeing the doctor following that scan. And again, you know things I kind of knew.
Speaker 2:When she came in a room she started asking me questions that she hadn't asked in previous visits. So, for example, one of those questions were you know, have you gotten sick lately? Like, have you had a virus or anything that may have been off? Have you been feeling off lately? And I told her. I said, well, no other than the itching that I had at that point, the medicine had helped a bit, so that was pretty much kind of resolving. And I told her I said, well, no, nothing got out of that. She said, well, have you been involved in an accident? Have you had a fall? Now, these were very serious questions, you know we go from did you have a viral infection to have you had a fall? Or were you involved in a car accident or any type of accident?
Speaker 2:So at that point, I mean, there was this look of confusion on my face, you know. And then so I told her. I said, well, you know what's going on. And so she said, well, I'm still trying to figure it out.
Speaker 2:She opened up her file and you know she had this puzzled look on her face. She was actually looking at the ultrasound that I had just had two weeks prior and comparing it to the scan that I just had a couple minutes ago. And she said I don't understand that something went wrong from two weeks ago to now. And I told her, I said when you say that something is wrong, what exactly is wrong? And she said I cannot explain it. She said but there's something going on with the baby's brain. She said there's a large abnormality that's on her brain, but her heart is also enlarged. And I asked her, I said well, what does this mean? And this, mind you, this is a high risk doctor who admitted that she had never seen anything like this in her years of practice before, especially a sudden change in a matter of a week. So, you know, at this point I asked her. I said, well, you know what's next.
Speaker 2:So she ended up consulting with maternal fetal medicine, who was graciously, you know enough to get me in on the same day for an appointment so that they can do a detailed scan. So ended up seeing MFM that same day and going into the MFM appointment prior to that, though in fact it kind of took me some time to process everything. I had my mom texting and calling and you know how did the scan go, how did everything go, and I remember replying back to her just keep us in your prayers. And because I didn't have the words to say I didn't have a diagnosis, I didn't know what was going on, it was very limited information.
Speaker 2:I contacted my husband immediately and I told him. I said hey, I said I've been referred to MFM and I need you to be here as soon as possible, to get here for this appointment. I couldn't even explain to him why. It was more of a get here and get here now. So we go into MFM and, honestly, when we, when we initially went to the MFM department because I've been. I've seen an MFM specialist before in a previous pregnancy, due to my history of preterm labor, and it's just so happened to be the same doctor, so at first it was okay. Well, maybe they overlooked something, maybe they thought they saw something that really wasn't there, you know, or maybe if this does exist, it won't be something you know. That that's just life.
Speaker 2:You know, we see the MFM team and this was this MFM appointment was very, very different than the previous ones that I've had in the past. As a matter of fact, the technician and they were very pleasant, very, very pleasant technician she for the most part she paid attention to the brain and the heart, but it was a lot of activity that was going on with the brain and so I could see immediately, as they were scanning Denver's brain, it's like the screen, the sonograph, just lit up with different colors and you could see it's like a lot of red, it was blue, it was like a lot of colors, a lot of activity. Now, this was very different from the previous scan that I just had about an hour prior. What we found was that, because the color Doppler wasn't used for the previous scan that I just had, they couldn't provide a diagnosis. So what looked like maybe fluid on the brain was actually blood that had built up, so it was an aneurysm. It was a very large in size aneurysm due to that high flow of blood that was causing the baby's heart to be enlarged. So basically it was a correlation with the size of the malformation and then also her heart being enlarged. So we found that information out during the MFM appointment. But what was more shocking is when we found out that in all of the years that the MFM doctor had practiced that, he had never seen anything like this before. As a matter of fact, it was another case that was similar, but that was many years ago, but nothing like this.
Speaker 2:Yeah, and so you know, when he started explaining the prognosis, like the high mortality rate that was associated with this condition, they were really concerned about the size of the malformation, the possibility of it growing, about the size of the malformation, the possibility of it growing, the possibility of it affecting her brain tissue. There was discussions about possible palliative care and then, finally, there was a suggestion for a referral to a neurointerventional radiologist that was local to New Orleans and, from my understanding, that may have been the only one in the state of Louisiana that I'm aware of at that time that had experience with this particular condition, because it's so rare, oh my goodness. Yes. So to show you just how serious this was, our doctor. Now, this is after hours. The appointment was at two thirty. The department closes at four thirty. We didn't leave there until after five.
Speaker 2:The yes, the MFM doctor actually came in and was taking photos from his cell phone, his personal cell phone and was sending it to this multidisciplinary team of people that he's worked with, that's familiar with cerebrovascular conditions and neurological related conditions, and he took photos from his phone and sent it to the neuro doctor in New Orleans and that doctor called us shortly after we were walking out of the MFM department. He called us. Yes, he called us and he explained to us, and I guess even out of MFM. That's a lot of information to take in for one day. You know, it was a lot to go from having the seemingly healthy pregnancy, like we were right here, close to the finish line, like I've hit the third trimester, hadn't had any issues. You know we were at the point of planning a baby shower. So, hearing the term palliative care and, you know, weekly monitoring to ensure that there isn't a fetal demise, you know, when you hear that type of terminology regarding a baby that you bonded with and you carried this long that you've otherwise had gotten really good reports about, I mean it really. It humbles you for sure, because at that point anything can happen, you know.
Speaker 2:But we stayed grounded in our faith and, you know, walked out of there and even though I was devastated. It's like I needed more information. I needed to conduct my own research. I needed to consult with God first and foremost. But this was something that I didn't understand Gain of Galen malformation. The first time that I heard that term was when my baby was being diagnosed with it. It was the same conversations where they were telling me that this condition also has a high mortality rate, that even with treatment, the mortality rate it was basically the same thing 33%, you know, in each category. So it was almost like, in a sense, you know, taking a gamble, taking a chance, like I said, because our faith is so grounded and we believe God. Like I've grown up, let me tell you I've grown up in a church that this is pretty much all I know.
Speaker 2:You know like praying, praying your way through difficult, challenging times. I grew up, you know, with my grandmother and my mom and my relatives, all of those people, the community that I was surrounded by, the village that helped to get me where I am now, you know. I remembered those things and reflected on everything that I knew, you know, in that present moment, and it was just mainly just praying and consulting with God. And he did. He definitely did a thing. Amen, he definitely. He definitely did a thing. Amen, he definitely, he definitely did a thing.
Speaker 2:It's like everything worked out. At the time we did not understand it, but everything worked out according to his plan it was. It was as if you know from the time that we got the diagnosis. Official diagnosis was February 15th. Denver made history on March 15th. Her vein of Galen malformation actually broke the record of being the largest malformation at that doctor who performed the procedure. It was the largest malformation that he had performed on. So she had broken a record, had made history and survived the odds, all in a matter of four weeks, wow.
Speaker 1:Wow, she's a tough little cookie.
Speaker 2:That had to be so overwhelming.
Speaker 1:But before I go on To just hear like I don't know who these doctors are, but they should be commended because you know, like all the statistics, the statistics shows that a lot of times African-American women are not treated the same. You know, we are the first ones to maybe die in childbirth or our child may have something and they die. But for them to just spend all that time with you, that is that's to be commended. Now, I always know that God can fix those problems, because that was definitely one. But I always know that God can fix those God sized problems, because that was definitely one, absolutely.
Speaker 2:He put the right people in the right place and you know, even with when you think of the black maternal health people who have helped us along our journey, when we did a day of service for Denver to commemorate her year for making service, we actually started at home. We ended up reaching out to the maternal fetal medicine team to acknowledge them and, as a matter of fact, we paid them visits so that they could actually get a chance to see Denver. But we personally reached out to them, we personally made it a habit to keep in contact with them and we've even joined a campaign.
Speaker 2:So as a part of our advocacy efforts we make, sure that we mention that part of our experience, what I've learned from other families that I've connected with since being on this journey. A lot of them, unfortunately, they were either misdiagnosed or they were given the option to terminate. It was never anything in between. It wasn't, you know? Oh well, here are other options for you. Or you know, it's almost like they had to do their own personal research without that extra support.
Speaker 1:You know from specialists that they really needed the help from, so we are very blessed in that aspect, I mean you guys had the right people at the right time, because they could have very well just kind of brushed it off oh you'll be fine, or like when they gave you the medicine for the itching or whatever, everything is fine. But for them to write, you know, for her to want to do that, we click to check on you and that baby.
Speaker 2:That was just awesome.
Speaker 2:I'm like OK, well, I mean that I'm so happy that the listeners are getting to hear this because there is, there are doctors out there that actually cared, you know, yes, so that was awesome. We were blessed with the best team of specialists from the very beginning, from, you know, just catching things early on. Because when you really think about it, had they had misdiagnosed her, had they not used color doppler to identify exactly what it was and we not had been referred to the doctor, the neuro, neuro interventional radiologist in New Orleans, we would have known about clinical trial in Boston. See, all of those connections and those conversations actually led us to finding out about the clinical trials specifically for this rare condition that was in a trial phase in Boston.
Speaker 1:Wow, I was going to bring that up because I remember hearing that on the Today Show about you guys traveling to Boston for the clinical trials, because a lot of people are not offered clinical trials.
Speaker 1:So why do you think that they, you know, thought about you guys or felt that you know you guys could do this? Do you think she was just like that about you guys or felt that you know you guys could, could do this? You think she was just like that strong if they knew that she could probably survive so here's the deal with this particular clinical trial.
Speaker 2:When we visited the doctor the neuro interventional doctor in new orleans, because this is such a rare condition um, he didn't have any experience on performing procedures on neonates. Doing a neonatal stage is most critical because usually right after birth, within the first 24 to 48 hours, babies with this type of condition, with BLGM, can go into immediate heart failure or pulmonary hypertension. So because this doctor didn't have experience with neonates, he had done his own research. So once he received the photos from the MFM doctor, now we saw the doctor in New Orleans a week after our MFM consult.
Speaker 2:So during that week we ended up having like just routine ultrasounds twice weekly and we also had an MRI done, which is a recommended scan that gives detail, like a detailed account of what's really happening inside of her body. So basically they were able to take measurements to determine like, the width of the malformation, the percentage of, like how large her heart was, and did some other things like measuring the ventricles in her brain, things that were vital to help them decide whether or not we would even qualify for the clinical trial. So there is a criteria the doctor in New Orleans, after he learned of our case, initially with the photos, he actually reached out to the doctor in Boston. His name is Dr Darren Carbach. He's the doctor, the neurointerventional radi doctor in Boston. His name is Dr Darren Orbach. He's the doctor, the neurointerventional radiologist in Boston. So once this doctor consulted with him, dr Orbach, he's been practicing for many years. He's what I call the expert of VOGM and for the most part because he's so familiar with these cases even complex cases of VOGM, because no one case is alike a lot of doctors consider him a mentor for them. So whenever he consulted with Dr Orbach regarding our case, he did share with him that we had an MRI that was scheduled, and you know he was what meted us first and then would happily refer us if that's the route that we wanted to go in. Now I'll show you how that works, though.
Speaker 2:So we see this neuro-interventional radiologist and this is the one in New Orleans, and in meeting with him he started he got really excited elaborating about a case that had just happened. It was like a cardio related case with another baby, an infant maybe, probably within the neonatal stage, and he was talking about the advancements of medicine and how things are ever changing and all of these different research studies and things like that. So he said, speaking of research studies, there is a clinical trial that is currently active. It's a multidisciplinary team at Boston Children's Hospital. He said now I have to caution you, he said, with VOGM, because it is so rare, because it has such a high mortality rate and because, you know, judging from the images.
Speaker 2:He hadn't even looked at the MRI images yet because we had just got there with the disc. We had MRI that evening before, but he said, just judging from these images, you know, time is of the essence because her malformation is really large, he said. But the thing is it hadn't compromised any brain tissue. Now this is the thing If the malformation would have compromised her brain tissue, at that point they wouldn't have been able to do any procedure, not in utero nor after birth. It would have just been solely palliative care.
Speaker 2:So we would have been just end of life care. But he said I will happily refer you. I asked him. I said, well, do you have additional information about it? He said it's very limited information because it's fairly new. He said there hadn't been a successful case here in the United States. He said, but there was one case in Paris. I'm like okay, you know. He was like there was one case there. And I'm like, okay, you know. But it was very limited information and I'm like, well, we'll see. You know, I'll reach out to the doctors.
Speaker 2:But we knew for sure that if there was an option available for us, we would be willing to consult with that team. So the doctor said, even though he happily referred us you know what he told me. He said, well, I would. I'm going to meet with a multidisciplinary board here in New Orleans that consisted of a team with Children's Hospital, with some other hospitals too, like a multitude of hospitals in the New Orleans area. And he said I'm going to meet with this multidisciplinary team. We'll go to the board to present your case, since you have a history of preterm labor. After meeting with the board I will contact you back so that we can have a contingency plan just in case you go into labor before you before, if there's any plans to travel to Boston, we'll be able to take care of you here and then we'll transfer you there if need be.
Speaker 2:So even on the local level, you know, for a team of professionals to even go that far, to collaborating with other doctors from local hospitals to meet with a board specifically about us, like Denver's name was being mentioned in a room of professionals and she wasn't even here yet. Wow, yeah, there was a team of people willing to help her and intervene on her behalf, and she wasn't even here yet. She wasn't even born. Isn't that something? Yes, yes, so he is amazing. We ended up consulting with the Boston team shortly after the appointment in New Orleans, and so we heard from them right away. We were able to send off our medical records and, let's see, we met with the doctor in New Orleans on a Thursday, and by that Monday we were doing a Zoom call with the team in Boston, and by that Monday we were doing a Zoom call with the team in Austin. Okay, and when I say doing a Zoom call with the team, I mean the people that would actually be performing the procedure.
Speaker 1:Yes, so we had a consult with them.
Speaker 2:Then, and this is the first time that we were able to like, we had the MRI images, but we hadn't, but we couldn't interpret them, you know, like we just had the disc, we had submitted it, but this was the first time that, you know, we were able to see the images in real time with a general explanation of what we were seeing and what we were dealing with. So after meeting with the team in Boston, they did let us know that, hey, this is a part of a clinical trial. You know we don't have too much data on it. The purpose of it was basically to improve outcomes, decrease that mortality rate. And then also, the plan wasn't to close the malformation completely, because that would have been too much of a risk. The plan was to close enough of the malformation to slow down the blood flow. That would in turn, you know, take the stress off of the heart. That would also relieve Denver of any complications of pulmonary hypertension that she otherwise would have experienced. So after they talked about all of that and they did share that, hey, it's 33% in each category untreated, 33% with intervention, 33% with the clinical trial. So it was all the same thing, but we were so determined to have this happen because, at the end of the day, you guys are the professionals. You know this is your area of expertise and if our daughter qualifies for this case, it's been like at this point it was about maybe two weeks since we had known about her diagnosis and within the two weeks we knew that her brain tissue was in compromise, that the VLGN was stable, so it hadn't grown any. But we knew that it still existed and we also knew that it was large in size and that prognosis didn't change. So we needed to yes, we needed to make something happen. So we actually.
Speaker 2:When they told us that we qualified and they gave us the measurements at the time, one of the criteria to qualify the smallest width of the malformation. It's like an opening. It had to be um at least seven millimeters. Denver's was right at 12. To qualify it had to be seven millimeters. Hers was at 12 and they came up with that number because they normally they typically see a decline with children whose malformation. As a matter of fact, it was eight millimeters. I'm sorry, at that time it was eight millimeters and they've since changed it to seven millimeters, so they found that, um, at that time children who's had, who had a fell scene. They call it a fell scene sinus width. It's the opening of the malformation. They found that children that was within like that eight millimeter category that those were the ones that had the decline shortly after birth and because members exceeded that number, they knew that she was in the 99.9 percentile of having an immediate decline oh my goodness yes, 99.9, 99.9 yes
Speaker 2:so. So 99.9 percent um category of having an immediate decline. My Lord, we started getting the wheels moving on this pretty quickly. We had the consult and probably maybe a week and a half or so we were having conversations with Austin Children's, their social services team, their MFM team, um airfare, you know, just all of that stuff taken care of which, um, thankfully, was worked out through their foundation. And then also it was a collaborative effort with housing from another non-profit that provides housing for families that traveled to Boston um, and they do that by way of donations and things of that nature.
Speaker 2:So we flew into Boston um on a Sunday evening and by that Monday we had a full schedule of appointments, meeting with different representatives of this multidisciplinary team. Before we signed any consents, they did explain to us the risk that was associated. So there were fetal risk and also maternal risk. The fetal risk because this was considered, you know, a procedure in which, almost like amniocentesis, there was the risk of hemorrhaging, there was a risk of fetal demise, of this not working at all, of them not being able to access the malformation to be able to close off or coil, the aneurysm.
Speaker 2:So there were quite a few risks involved and I mean we went there. Like I said, we were grounded in our faith. So we went there. Our confidence was on 1,000 plus. You know, we were trusting God for something.
Speaker 2:As a matter of fact, almost missed our flight because on the way out I have this calendar that's posted right above a desk and that was my workspace during COVID that when I'm working remotely and when I'm working from home and just trying to get things done, I have this desk in my room with this calendar above it. And as we were walking out I ended up getting my husband's attention. I said we have to go back and he's like I said. I said follow me. I said let's let's just go back, let's go back to the room. So we went to the room and the last sermon we ended up flying out on a Sunday on a Sunday, but the Sunday prior to that, the last sermon that our preacher preached was about the month of March being dedicated as Miracle March. So on the calendar it said Miracle March, but I told my husband. I said I want you to write this.
Speaker 2:So on March 15th was the day that we had the scheduled procedure and I told him to write successful intervention for Denver because we were claiming something. So he wrote on that board, successful intervention. And then we walked out. I'm telling you, we were maybe a couple minutes almost missing our flight to come back to do that, but we caught our flight and we made sure that we declared that and on March 15th, not only did we have a successful intervention, but you know, two days later our baby would be born. And not only did she make history, but she exceeded expectations. As a matter of fact, her case was the most successful in the world for her condition.
Speaker 1:Oh, wow, so you guys, actually they did this intervention while you were carrying the baby.
Speaker 2:Yes, so it was an in utero procedure. I was wide awake for it. I um yeah, I just I had an epidural ended up willing me off to um to the OR. Now my husband couldn't be present for it. They had monitors scheduled like strategically placed where I can basically see. So it's like sonogrammed because it's an ultrasound guided procedure.
Speaker 2:The day leading up to the procedure I had to see MFM and at that point get an assessment of myself in Denver. One of the things that stood out during that visit they mentioned that in order for the procedure to be successful or for them to even gain access to her aneurysm, they needed to make sure that she was properly positioned. And they learned from the ultrasound that she was properly positioned. She was already prepared for it. They had to also yes, they had to also inject her in her thigh to give her an anesthetic to keep her still so that they can access the like have to go through the back of the skull and then access the aneurysm through an ultrasound guided needle. So there were tiny coils that were deployed from the needle into inside the malformation.
Speaker 2:Now, leading up to the procedure actually, the date of it was maybe an estimate of how many coils would be needed Because our malformation was so large in size. They were guessing anywhere between 20 to 30. And once they did the procedure it was 23 coils. That was enough to. They were comfortable with 23 coils, just closing off that portion of the malformation, to be able to take that stress from her heart and that high output blood flow that was affecting her lungs.
Speaker 1:So my goodness, because I know that, like adults, sometimes do not survive aneurysms. So, as you were saying, I'm like that's my moment.
Speaker 2:Yeah, and, believe it or not, the measurements were actually posted publicly in a journal through Stroke and there is an affiliation with the American Heart Association.
Speaker 2:So it is in a medical journal that was posted on, I believe, may 4th, which is around the same time that you know that everything was communicated, I guess, with the media. It's the same day that CNN published their interview with us and basically sharing with the world how the procedure was done, how Denver was doing, what our experience was. But yeah, it has such a high mortality rate to where the people in the support community, the VODM support group, they read the article and they, before reading the article, whenever they saw like the measurements and stuff, they were almost it was like we know kids from this particular community who's had smaller vlgms like the measurements were smaller and they passed away and then here you have this groundbreaking number and not only did she have break the record for the largest malformation, but Denver was also six weeks creamy and underweight.
Speaker 1:Wow.
Speaker 2:So she was four pounds one ounce, so she was a real underdog in all of this, yeah.
Speaker 1:Oh my goodness, she just kind of broke all the odds, you know, oh my goodness she has. That is so awesome. Wow, and how old is Chanel?
Speaker 2:So Denver is 17 months. She recently made 17 months, on Saturday 17 months.
Speaker 1:So you guys, your x-rays and I guess some of the MRI images, it made its way to Grey's Anatomy. How was that yeah?
Speaker 2:So leading, but prior to Grey's Anatomy. How was that? Yeah, so leading, but prior to Grey's Anatomy, like I said, cnn they actually broke news. First it was CNN and then followed by it was a lot of media interest in everything. So it was CNN and it was the local news station, local to Boston. We had local coverage in Louisiana, but then the Today Show followed, like the mid part of May, and the article came, like I said, the beginning of May, and we've collaborated with a couple nonprofits and this was our efforts of spreading awareness that, hey, this is a rare condition, that does exist. Well, it caught the attention of the producers of Grey's Anatomy, I want to say in early December, actually in late November. I was made aware of it in early December.
Speaker 2:Well, the producers of Grey's had contacted Boston Children's first initially and, um, your contact, because it's a multidisciplinary team, and what they were requesting? Because they wanted this particular episode to be as authentic as possible. Um, I know that they're a medical drama, you know, like a medical drama show, so that there are, you know, some things that they kind of exaggerate a little bit or are at their own twist to it, but for this particular episode, I guess, kind of building up to like the plot and things like that. They wanted to keep things as authentic as possible, so that meant that they needed our consent. They got the consent from the hospitals both hospitals that were involved, which was Boston Children's and Brigham and Women's Hospital, both in Boston. But they needed our consent because I was featured and also Denver would be featured by way of images for the episode itself. Okay and yeah. So we ended up just, you know, to make sure, because there were some consents and stuff that we had to sign.
Speaker 2:But I ended up having a contact with producers should just kind of get some clarity on purpose and just kind of understand how they planned on utilizing the images, um, so that there was that conversation with that and everything was signed by january and we were told that, um, the episode would air on their most recent season, which was season 20, episode 4, which, um, ironically, um, the season premiere actually came out, I want to say, within a week of their disease day, which is the last day in february. So it was almost like really perfect timing. Now we, um, we kind of we knew with the episode number 50, we knew that this would premiere for this particular season, but we weren't. That's the only information that we had. So when the viewers watched the Grey's Anatomy episode, that was also our first time seeing it too, um.
Speaker 2:So yes, denver's images, all of her original images um, her MRIs, the ultrasound, even the um, even the filming that took place in the OR where you can see on the sonograph, like the screen, where you can see all of the actual images in the OR during the procedure itself. Those are all the original images, oh, wow.
Speaker 2:Yeah it was the images and the video. They used the clip of the video from the surgery, which was my husband's first time seeing that because, again, he wasn't present in the OR.
Speaker 1:Oh my goodness. So that is awesome because that raised awareness as well, and I love the fact that you are raising awareness because you are truly blessed Remaining is truly blessed that you had curing doctors. You have a good team of doctors down there in Louisiana that referred you to Boston, so I'm so happy that you're an advocate for VOGM. Yeah, and what?
Speaker 2:the advocacy efforts look like, though and it's not just VOGM, it's rare diseases in general, like rare conditions, because when we first learned of this, you know it's like we had to do our own research and I could imagine how other people feel. You know it's like we have to do our own research and I could imagine how other people feel. You know, and it's almost like walking in the shoes of. When you hear about the different pediatric cancers, you know, like we know, that that exists, even though that there are so many different types of pediatric cancers. We know that it's a thing you know, and there are some that are more common than others, but when you think that it's a vein of malformation, most people had never heard of that before. So being able to utilize the Grey's Anatomy platform, all of the media coverage that happened with it, including the medical journal, and knowing that they are teaching this like that's a teaching opportunity for your future medical professionals this like that's a teaching opportunity for your future medical professionals, and it also sparked the interest of, you know, local specialists here, because in the state of Louisiana and also in other states too, you know, outside of Boston, you know there's very little known or very little known specialists that have the experience when it comes to certain rare conditions. So the advocacy efforts are more centered around hey, these things exist. These are some of the things that may benefit parents that may be diagnosed.
Speaker 2:This is to help the medical community to ensure that they aren't misdiagnosing people, that they're making sure that there isn't a delay of care. Also making sure that people are trained appropriately. So, for example, for the ultrasounds, we know that color Doppler that's a game changer and a lifesaver. Without the color Doppler it's impossible for you to see, to kind of differentiate. You know it's like the high output blood flow or whether or not to kind of differentiate. You know it's like a high output blood flow or whether or not it's fluid, and you know it gives a more detailed picture of what's actually taking place. So that's a that's a game changer and that's a learning opportunity for those who are sonographers, or you know those that who are techs like ultrasound techs and radiology techs just opportunities to make them aware you know, of the different methods that are required for them to properly diagnose.
Speaker 1:That is awesome. I'm glad you mentioned the color Doppler, because I was going to ask about that, so thanks for explaining that. That's something new right.
Speaker 2:Well, no color Dopplerler is recommended. Um, now, usually when you have like a typical biophysical ultrasound where they're looking at the baby's breathing patterns and um, things like that and that's normally, they're not using color doppler for that purpose. Um, in my case, the ultrasound that I had at 28 weeks, it kind of it was just about physical. The ultrasound that I had once we found out that first ultrasound that I had once we found out about Denver, it wasn't in color doppler so where they can see that she had a large abnormality on her brain and her heart was enlarged. That was the only information that they could give. It wasn't until we saw MFM a couple hours later. They turned on a color doppler and they saw that it was a high outlet or high pressure, a blood flow that was causing the enlarged heart. Wow, so without that I wouldn't have had that information that was vital to diagnose her in the first place.
Speaker 1:You know, and that's what is so remarkable, because just those little extra steps help save your baby's life.
Speaker 2:Oh yeah.
Speaker 1:Amazing, Amazing. I think we have kind of like I know we didn't ask them all, but you covered them all and I have just I'm just in awe and I'm just excited that you shared this story and it's just a miracle in and all, because I love the Lord and I know how he works miracles and this was totally a miracle, all the steps that you have shared with us on today, and I know that you probably have helped another parent and like you said it just may not be that particular rare disease, it could be another one and the steps that you can take for efficacy for yourself and for your unborn child so right, and then even taking it a step further, um, even to like just the um, availability of pediatric medical daycare.
Speaker 2:so like, yes, these children are discharged from the NICU, you, you know, with these rare conditions it doesn't go away, it's just more of managed and maintained. And then you have all of these different things in place like it could be therapies and stuff to kind of help them. You know progress and things like that. But you know, even just taking it as far as, hey, there are pediatric medical daycare centers. Now, not every state offered them and at some point, hopefully, these advocacy efforts will reach the ears, you know, of the people that are in power, that have been positions of power to perhaps maybe consult with other state officials so that they can make that particular service available in all states.
Speaker 2:So that parents that have medically fragile children, like whenever they go back to work, because of course, you know, you know you have to take care of the child some kind of way. You know you have to take care of your family, you have to pay for the same financially, and in order for them to do that, you know you need to need some type of child care in place and that transition from the NICU back home like that's a totally different conversation, but at least having some type of resource in place for those parents. Unfortunately, a lot of them aren't able to go back to work because they spend the majority of their time caring for their children, the medically fragile children.
Speaker 1:So now are you remotely working and taking care of your child? Are you able to leave her at a center?
Speaker 2:Yes, so Denver. Actually, she attends a pediatric medical daycare center. Here I have what I call a hybrid schedule, where I work in the office and then also, on select days, I work remotely. I find, though, with the pediatric medical daycare centers it is like a skilled nursing facility. So they have experience, they have NICU nurses or those people that have experience working in the NICU. Most of them have respiratory therapists. There's even a curriculum to basically keep them on track. Now, denver attends the pediatric medical daycare Center for observational purposes only, so, where she's not there because she needs like she needs like this long term care, she's there for observation because, with vein of galen malformation like, what we found is that the effects of it are all unpredictable. Um, we know that her VOGM isn't closed, but she won't. As from what we know right now, she won't require any additional procedures.
Speaker 2:Um so that that's yeah, so we're we're very thankful to God for that. But, um, yeah, she's at the pediatric medical daycare center and she absolutely loves it. I mean, it's a godsend for us and we really do hope you know, that in the near future um other families would have that option available to them soon.
Speaker 1:Right, so I mean that is just so awesome to have all of that in place. We thank you so much for sharing her story. I want the listeners to know how they can follow you in Denver story, because I'm going to continue to follow you guys.
Speaker 2:Yes, please follow us. We have some things. I mean, we collaborate with a lot of nonprofits, we do a lot of community service type work and we are currently planning her day of service event, which commemorates the day that she made history. We did this event for the first time this year in March and we are hoping to make this an annual thing. So you can follow Denver, you can follow her journey. She has a Facebook page. It's called Once Upon a Miracle Denver's VOGM Journey and we'll basically keep you guys posted on how well she's progressing, any updates in our collaborative relationships with nonprofits, community services and also our interactions with the general public.
Speaker 1:We're going to have you back again too. Probably we want Denver to be on her second birthday, or something.
Speaker 2:Well, that would be awesome. Just let me know, and I will definitely have her here.
Speaker 1:Okay, guys, Thank y'all for tuning in for another exciting episode of Coffee Chit Chat and we'll see you guys.
