Thinking About Ob/Gyn
A fresh and evidence-based perspective of all things related to obstetrics and gynecology. Follow us on Instagram @thinkingaboutobgyn or visit thinkingaboutobgyn.com for show notes and more.
Thinking About Ob/Gyn
Episode 10.4 Noah
Dr. Jacqueline Vidosh shares her powerful journey as both an obstetrician and mother to Noah, who has trisomy 18, challenging traditional medical understanding of this condition and providing insights into compassionate patient care. Her story, recently featured in The New York Times, illustrates how medical perspectives on chromosomal conditions can evolve through lived experience, highlighting the spectrum nature of trisomy 18 and the importance of accurate, unbiased counseling.
• Receiving the diagnosis during pregnancy and navigating the emotional process when medical training suggested a fatal outcome
• Discovering that trisomy 18 exists on a spectrum with possibilities beyond what medical textbooks described
• Managing Noah's complex medical needs including ventilator, tracheostomy, and gastrostomy tube while balancing family life
• Advocating for appropriate medical interventions by challenging the assumption that care would be "futile"
• Celebrating Noah's achievements and joys – his love of music, lights, and his unique ways of communication
• Recent medical literature supporting interventions for trisomy 18/13 on a case-by-case basis
• Using the SPIKES protocol for delivering difficult news with respect and compassion
• Implementing trauma-informed care for families experiencing complicated pregnancies and NICU stays
Read more about Noah's story in The New York Times article, available through the free link provided in our show notes.
https://www.nytimes.com/2025/07/31/magazine/trisomy-18-edwards-syndrome-baby-treatment-care.html?unlocked_article_code=1.ak8.JRBu.7-qMQhelsVYx&smid=url-share
00:00:00 Introduction to Trisomy 18 Discussion
00:08:40 Receiving the Diagnosis
00:17:45 Challenging Medical Assumptions
00:27:30 Noah's Daily Life and Care
00:38:20 Joy and Connection with Noah
00:47:10 Navigating the Medical System
00:54:00 Breaking Difficult News Effectively
Follow us on Instagram @thinkingaboutobgyn.
Welcome to Thinking About OB-GYN. Today's episode features Howard Harrell and Jacqueline Vidosch discussing Trisomy 18. Howard.
Speaker 3:Jacqueline.
Speaker 2:What are we thinking about on today's episode?
Speaker 3:Well, when you were on last time, we said we would talk about Noah when you came back on. So for our listeners, you'll remember Jacqueline Vidosch who we had on episode 9.3. That was so long ago talking about obstetric life support. So recall that she and her colleagues developed the obstetric life support program and we went through all that in that prior episode. But we wanted to have her come back and talk about her son, noah, who has trisomy 18. And the timing couldn't be much better because Noah's story was just recently featured in a really wonderful New York Times piece and we'll put a link to that. And it's a free link too, so if you don't subscribe to the New York Times, you'll still be able to read it. And it's quite a long article, really great pictures. I encourage everybody to take a look at it and it goes into a lot of different detail than we might get into today. But really well written and well done, and we're going to go over some of this story today.
Speaker 2:Well, I am super excited and just very grateful to get to be here and talk about my scrappy little kid.
Speaker 3:Well, I'm going to ask some questions, so I'm going to play the interviewer.
Speaker 2:Okay, sounds great.
Speaker 3:Okay, so, as our listeners know, you're an obstetrician, so the article does a really good job of this. But can you take us back to the moment that you received a call from your own obstetrician's office about your blood screening test results presumably a cell-free DNA test, presumably a cell-free DNA test. So the article mentions that you instantly recognize the tone that she used, the tone that you've probably we've all used with our own patients, but what was it like being on the other side of that conversation?
Speaker 2:I think there are so many words that kind of come to mind as to how to describe it, but I think the one that I consistently come back to is just surreal and I it's like I just remember hearing her saying my, it was only my name even. It was just like Jacqueline, I've got some news to tell you and it was just like a punch. I think that I had had some bleeding and some cramping, which was atypical for me. I had never experienced that with my other pregnancies. So I was a little kind of concerned, and maybe, dare I say, obsessive, about those results, because I just needed to know that things were okay and then I felt like I could settle down. So then, when I heard that just slight inflection in my name, I knew something was wrong.
Speaker 3:Yeah, these are such difficult things and I always, especially in the day now, and this may not have been true when you were pregnant with Noah, but everybody sees their records before we do practically. And they're getting these results pathology results, genetic testing results and it's always a struggle of we really should call them on the phone. And then we were kind of taught don't have these kinds of conversations on the phone, but pragmatically we're forced to do that. And it's always difficult.
Speaker 2:I agree and I, yes, I think I tell my patients. Sometimes it's like if I have bad news, it's going to be the lesser of two evils if I just call you, even though I would like to be next to you ideally. Yeah. So, I hear that.
Speaker 3:Yeah, so you said your initial prayer was for the diagnosis to be trisomy 21, which of course is down syndrome, because you can sit when we all do right.
Speaker 3:That's the milder of those conditions that we test for. These tests typically have trisomy 21, trisomy 18 and trisomy 13, so edward and patow syndrome. And then of course you get with a standard test. Nowadays you get turner syndrome and some of the sex chromosome abnormalities, because you're testing for sex chromosomes and sometimes more specific testing to Georges or we don't really use that term anymore, but it depends on your company but obviously you were hoping it was trisomy 21, but then she confirmed it was trisomy 18, which we all learn about in medical school as being fatal and hopeless and babies just don't survive.
Speaker 3:So what was your immediate emotional and clinical reaction?
Speaker 2:Yeah, pretty much in like the span of point five seconds I think. I went just like. My mind went in overdrive, just like you said, and it was just like man. I really just hope this is Down syndrome, because I am going to lose this baby. It felt like the only hope I had for this pregnancy was if the results were Down syndrome. So when it turned out to be 18, I experienced kind of shock, grief, numbness, all in this very rapid sequence of events and, interestingly, I was actually walking into a shift to work. So then I'm like, how do I do this part of me, like the part that kind of won out on that was I need to compartmentalize right now and because if I just sit with this, all I'm going to do is just be really sad. So I need to distract myself a little bit. But it was difficult. I thought that I lost the pregnancy, this baby, in the span of just a few seconds.
Speaker 3:Yeah, Now the article says that you considered termination, which you were in Texas at the time, right?
Speaker 3:Yes, and that was legal in Texas at that time, but you ultimately chose in the words you used to be Noah's mom as long as he decides to be here. So this is a tough thing, and none of us know what this is like. Until we're well until we're you in that position, we pretend to know what it is and we talk to our patients about it, but can you walk us through the personal and ethical considerations that led to your decision?
Speaker 2:Sure, I think first and foremost I recognize the sensitivity of this particular topic and just how personal it is for everybody. And you're absolutely right, like you don't know what you're going to do or how you're going to think or respond until you're actually forced to do it. I think when I was processing the results in that very early stage, I was doing that under the auspice that, again, trisomy 18 was fatal and if I didn't miscarry that I wasn't going to have any time anyway. So there was kind of that aspect and do I want to go through all of this and do a termination? But I couldn't personally just get to a point where I feel like I could accept that. And then I got my results kind of toward the end of the first trimester and as the further you get away or the further you go and progress in pregnancy, the less likely the pregnancy is to miscarry, even with trisomy. While the overall the risk of miscarriage and stillbirth with trisomies are higher than average, they're still follow that decreasing trend. So as you continue in pregnancy they have a much higher likelihood of delivery and I think, just as a sidebar, that's really important for us as obstetricians to know, because that's something that a lot of families are counseled about that they're going to lose their baby in the delivery room, and that can happen, just like it can with any other baby. But we need to be preparing these parents that there's going to be a live baby and that decisions that you think you weren't going to have to make you need to start thinking about. And I think that's kind of the point where I was at.
Speaker 2:I had gotten toward the end of my first trimester, I had not miscarried and I'm in this position where I have to make a choice. I had not miscarried and I'm in this position where I have to make. I have to make a choice. So do I terminate and go down that path with those decisions and feelings and emotions, or do I continue? And then, is it comfort care? Is it intervention? I was. I didn't even think intervention was a thing at the very beginning. So I was just kind of I just accepted comfort care because I didn't feel for myself that I could make the decision to terminate. And yeah, I just kind of got to this point where I was like, all right, I didn't consider this for my other two. And this doesn't seem fair to him. He didn't. This was a desired pregnancy. So if I wasn't going to do this for my other two, then I was going to carry and figure it out, and that was how I got there.
Speaker 3:Did you do early self-redenate testing with your other pregnancies, or is that not really that popular at the end?
Speaker 2:I didn't get the chance to do that with Ginley because I was not a woman of a certain age and when I was pregnant with her that was really kind of you either had to have been 35 or had another risk factor for that. So I did not do it with her. And then I was at the cusp of being 35 when I had Franklin, that I did do the cell free DNA for him, and then I was obviously like 37 when I had Noah. So I definitely wanted it.
Speaker 3:A woman never reveals her age.
Speaker 2:I have earned these 42 years. So I am proud there might be a little bit more hot hair dye now than there was 10 years ago, but yeah.
Speaker 3:I need some hair dye Now. Now, one of the things just slip into teaching mode. This, of course, the self-reduce test, of course, is not a confirmatory test.
Speaker 2:Correct.
Speaker 3:There's still a very healthy. If someone gets this test back, depending on your age and which of the trisomies we're talking about, there's still a significant and even sometimes major risk that the test is a false positive result that you have in your hand or a false discovery. To be more statistically correct, Did you do confirmatory testing?
Speaker 2:I did. We did an amniocentesis. I think I was about 17 weeks when we did that, so it was definitely a second trimester, but I wanted to know. I I needed to know if it was full or mosaic or partially. I just I am of the mindset that I want as much information at my disposal as possible to make as informed a decision as I can. So for me that was really important.
Speaker 3:Yeah and I think that's one of the things that we often forget with counseling too is that this yeah, you get this information at 10 or 11 weeks of this test result, but this test result is neither definitive nor accurate. Say, even with Down syndrome, does it tell the whole story, like, are there major cardiac abnormalities, or are there not Things that you're not going to learn until later? And so it's the beginning of a lot more potential information and a lot of uncertainty, and it doesn't end until well, birth in many cases.
Speaker 2:Exactly, and I'm not. I'm I for the listeners? I've been nodding. Everything that you're saying, yeah.
Speaker 3:Her head's moving up and down. Yeah, Okay, so then you're Dr Mom here. So your initial you're going to challenge the prognosis a little bit here and, as you said, we were taught in medical school that this is just a fatal diagnosis and I don't know if I taught you that in medical school, but I apologize if I did, but you went to look right. So your initial online searches obviously you get a grim picture, with life expectancy obviously measured sometimes in days or weeks and rarely in months. But then you said you saw on YouTube a video of a toddler named Alex with trisomy 18, who was sitting up and playing. And how did seeing that video shift your understanding of what might be possible seeing?
Speaker 2:that video shift your understanding of what might be possible. What was so crazy about that video is I had these like dueling factions inside myself and on the one hand it was just like, oh my gosh, this is amazing and I had no idea that was even a possibility. And then I had this and there was like this little crack of hope trying to come through. And then on the other side it was like, but this is not what you were taught and how do I marry these two things? And I was, so I had grieved after I had gotten the diagnosis for so much, and then this was weeks after I had gotten the initial diagnosis.
Speaker 2:So I was so scared that if I allowed myself to really let in the hope that maybe there was more of a spectrum, that I was going to have to hurt again like deeply all over and still have the same result, I think was my kind of like that's the under arching idea. But it did start the paradigm shift for myself slowly but surely, and then I was able kind of through this process, I started meeting other people virtually and then I am really grateful that I found the soft website because it had papers, it had scientific literature that I love and trust and get to fall back into. So it's like my little scientific security blanket, if you will. And that is probably really where the momentum of the shift changed for me was having scientific papers that I could start to analyze and chew on.
Speaker 3:Yeah, our job as physicians really is to give patients as much accurate information as possible about, in this case, the range of prognostic outcomes and things like that and Tony and I, on the last episode talked about the new.
Speaker 3:There's a new 21 and zero week pregnancy that lived to year one and there is a risk sometimes that everybody else who's faced with a 21-week preterm delivery will find that article and have an expectation that is a one-off and sometimes with genetic and chromosomal abnormalities, as you said, there are mosaicism and different degrees of structural abnormalities and so not everybody has the exceptional outcomes. But our job is not to give people the worst case or really the best case, but the range and the average outcomes and what we know specific to their condition, and I think you and I are going to talk about that a little bit later.
Speaker 2:But I think that kind of that full scope spectrum of counseling is so important for any of these things, not just specific to trisomy, so important for any of these things, not just specific to trisomy. But I think it was really interesting too when I was kind of first starting my research. I would find ways to like poke holes in these little areas of hope. So Alex, as a, for instance, was a boy, but he was, he is, he's still alive. I think he's nine now. Actually he's a mosaic trisomy, so that's not the same.
Speaker 3:I knew you don't necessarily know that when you're watching the YouTube video.
Speaker 2:Correct and but I knew that I was full try or that Noah had full trisomy 18. And then there is another. She's actually another. There's another obstetrician that has a child with trisomy 18. But she's a girl and the literature kind of suggests that girls tend to do better and live longer than boys.
Speaker 2:And obviously Noah's a boy and it was just easy for me to kind of talk myself out of it and I think I harp on this so much because we are the gatekeepers as obstetricians in this conversation. So our responsibility to set somebody on this road is huge. No one else has that first conversation except us, 99 times out of a hundred. So how are we creating space for these families to think about what they would want to do and how are they analyzing the information? How are they analyzing the information that's? It's really linked a lot of times in the way that initial conversation goes. So even though I wasn't having other physicians necessarily tell me oh, you need to terminate or you need to do this or whatever that so many other families here I had had that conversation internally and it was just a really hard wheel to change for myself. So I feel like I'm rambling at you right now. We'll talk about that more. No, you're fine.
Speaker 3:No you're fine, no, it's all good. And you discovered, as you said, you discovered soft. And then you looked through the stories. There's family stories and scientific literature and lifespans of information and treatments that are available that may improve survival. And obviously all that was different than your expectation, even as an OBGYN, and what you'd learn in residency and medical school. So how did you work all that information into your process?
Speaker 2:It took a lot of research and I started taking notes. But as I kept reading and digesting the material, it started to gain a lot more momentum and then it was like, okay, there is definitely more room for hope in this situation. And then, comparing what I'm reading with Noah's ultrasounds and the things that we were seeing were not overly complex. He did have a VSD on ultrasound but he was well-grown, his brain looked okay. A VSD is 80 to 90% of children with trisomy 18 have some form of a heart defect, vsds or ventricular septal defects being the most common. So if that's the bread and butter for these cardiothoracic surgeons, that's not too bad from that perspective. And he we did have pretty severe poly by the end of everything, but otherwise he's looking okay. So I think it was kind of just that combination of things and getting more and more support, not feeling so isolated in this process that I really that's really how the change started happening for me.
Speaker 3:And at some point you become the advocate, right. So two months before your due date, you posted to a Facebook group of obstetrician mothers there's no Facebook group for father obstetrician fathers or whatever, but anyway urging them to keep up with research and to try to provide unbiased information about conditions like trisomy 18 and trisomy 18. In fact, it's not fatal. So explain how you became the advocate here before, even before Noah was born.
Speaker 2:I think that, knowing that it took me so long to kind of switch my my thinking about things, and also knowing, like, where my heart is, I want to be a good mom to this baby I, I there are just so many different things and emotions. So if I, in this position of privilege and being able to really evaluate the scientific literature and everything was struggling so much, then I need to stand in that gap for families that don't have that privilege and luxury. And I just was getting. I was just I don't want to use the word angry, but maybe a little bit angry. We're not up to date. I hate that.
Speaker 2:I want us to be evidence-based and I think that's really important, not only for us but for our patients. So advocacy has kind of been a thing that has been woven throughout my life and this was just the time to stand in the gap again and I think there are very few of us that have both that physician gap and the parent gap. So being able to be a bridge between both because I love both groups, I'm not mad at any of them it gave me a platform.
Speaker 3:And we've been highlighting in our 10th season. This season we've been highlighting misinformation on social media and stuff like that, and there's so much of it.
Speaker 3:You can come back and we'll do a whole episode on OB misinformation. But the thing is we create some of that opportunity for those out there who give misinformation by not educating patients correctly and once they discover that something you said is a little off, if you're wrong about anything, then you've lost credibility. And then, in the person who told them and showed them that you were wrong about something, they are now the authority and they're and they may be wrong about everything else they say, but but we can prevent a lot of the stuff that our patients are with their own independent research or finding if we would just provide accurate information to them to begin with and make sure all their questions are answered correctly and accurately.
Speaker 2:I agree.
Speaker 3:But OK, well, so now let's talk about maybe a day in the life with Noah. So the article does a good job of going through the evening routine which for Noah, which involves a ventilator, a vest to loosen the mucus, a gastrostomy tube, a tracheostomy, a lot of medications. So could you describe the level of medical care that he requires at home and then your team nurses, et cetera that help you manage all that?
Speaker 2:Sure. So I have joked for several years now that I have been grandmothered into PEDS, critical care, especially with the advent of the vent. And it's kind of funny as a sidebar I going into medical school and then definitely, as I was like deciding for residency, I knew I wasn't going to do anything that involved secretions in the mouth, because I think it is gross. I don't know how people can be pulmonologists and anesthesiologists because they have to deal with the airway and I felt so confident that being an obstetrician was going to keep me far from that. And then here I am now managing a vent and secretions and all these things at home and it's just the universe's joke.
Speaker 2:But to paint a picture, Noah, because of his tracheostomy in particular, has a critical airway and anytime that you've got a critical airway, that's essentially like ICU care. So even if Noah was going to be admitted for like constipation or something completely unrelated to his airway as a primary cause because of his airway, he does even still go to the ICU. That being said, he also has a routine and once you kind of learn his little routine, that's just part of your life and you get through it 15, 20 minutes at a time and then you go forward with your day.
Speaker 2:So Noah has kind of in the morning he'll have his first round of breathing treatments and we do his trach cleaning, g-tube cleaning, brush his teeth, get him ready to go, and then he has his activities in the morning. So we really try to keep him active. We've got a stander to help him retain muscle strength. He has physical therapists, occupational therapists, who thankfully, both of those have been with him since he was a baby and know him so well. He has speech therapy. Last year he got to have homebound school so his teacher will come and work with him, which has just been a lot of fun to watch, and then he'll have feedings throughout the day.
Speaker 2:We have an afternoon breathing session and then he has his evening session and the nurse who thankfully in Texas we've been awarded 168 hours of nursing a week, which is 24-7 care, but that's not the same in other states and then so they will assist with him and their primary focus is Noah, which is great because not only does that allow me the opportunity to continue working, but you get to. It's a little bit easier when you're having to make dinner and chase the other two around and go to practices and things like that, but I think like that. The routine is just part of our normal life and you get used to it and you keep going, and when you want to go out for an outing you just have to prepare a little bit more. But you still get to go do fun things and we're not all tied down at the house 24-7 and things like that.
Speaker 3:I think one of the focuses of the article, too, is how the recent Medicaid cuts may affect you personally or Katie Beckett type programs. Can you talk about that a little bit.
Speaker 2:Yes, and I appreciate you bringing this up so kind of the 20,000 foot view of everything. You have the federal pot of money that for Medicaid which is then subsequently partitioned out to each state. So Medicaid is predominantly run by each individual state and what that means is for us in particular, who require a Medicaid waiver, and that is through the Katie Beckett law, which is a federal law, but it affords access to Medicaid for children who have a life-limiting diagnosis or some kind of diagnosis criteria that would otherwise income out of traditional Medicaid because of their parents' income. So that's what we have and why I, as a physician making six figures, require Medicaid is because the majority of states do not require primary insurances to cover what Medicaid otherwise would. So I pay into my private insurance every month, faithfully, and they get to tell me no, I'm not going to cover any of your home health care and we're not going to cover some of these DMEs and we're not going to cover some of this equipment. So it becomes either get Medicaid and on the waiver or don't have help, which is just crazy to me. But anyway, so we are on this waiver program and I think, with all of these recent budget cuts, it's really concerning because we don't really know how is that going to impact the waiver system. That's not really been spelled out. How is this going to impact those that are on the traditional Medicaid?
Speaker 2:Because there is no other alternative for most states to have these other, these coverages and because it is very state dependent, everything is is unique to that state. So, as a, for instance, texas, has the waiver program, they do tend to be more generous with their hours once you're on it, but they have a huge waiting list. There are thousands of children waiting to have access to this program, some of whom can die in between getting on the waiting list before they even get access to it. Other states, while they may not have a waiting list, they are significantly more strict with how many hours you get. So you might be getting 50, 60, 70 hours, even with a trach where you have kind of these critical areas, excuse me, like just these critical issues.
Speaker 2:So how do parents work and sleep and do all these things? So there's just it's very unique. It's very confusing trying to figure out what state does what and what are your options. If you ever wanted to try to move, you don't get to know what your kid qualifies for until you're actually in the state. You have to have a state address before you can go through the qualification process. So that's terrifying and it just there's a lot of roadblocks, I think, to care in that regard. So to have these issues now, while we do have the money in the Medicaid pot, and then to be removing it and not really knowing how it's going to be removed, is it's a really vulnerable spot right now. To be honest, I'm scared.
Speaker 3:And that whole situation about different states having different implementations and all that's affected your own choice about postgraduate training and fellowship and what state you live in and everything else you've had your hands tied, among other things, it is one of the primary reasons why I haven't gotten to complete a MFM fellowship, so yeah, yeah, okay, well so, but despite all of these immense medical needs, the photography in this article is really beautiful.
Speaker 3:There's a photo of Noah smiling, playing with the caterpillar, which I think we mentioned on the last podcast, or we talked about it.
Speaker 2:Oh, I think it was clicking.
Speaker 3:Yeah, it was clicking. Yeah, yeah, it's in the background, not edited out. But what are the moments of joy and connection with Noah that these statistics and the charts? They just don't capture with Noah that?
Speaker 2:these statistics and the charts. They just don't capture. Yeah, I think that is probably one of my favorite things to talk about because, again, historically, when you talk about trisomy 18, you think, oh, if they're alive they're going to be a vegetable and I hate that term, by the way but just they're not going to have any kind of coherence and they're not going to know their surroundings and things like that. And trisomy 18 and 13 are a spectrum of disease.
Speaker 2:But Noah experiences his life and it is so just fun and lovely to get to sit and watch him experience it. He has preferences for music that he loves and I am very proud to say that he loves pink and he loves Bob Marley and Stevie Wonder. So he's got a really great range and taste in music and he loves to dance, he loves color, he loves lights. To have gotten to do with him for the last five years is take him to see the Christmas light show at the zoo, it's right. It makes me so emotional because there's just this purity in and delight in watching him that you just don't get to experience otherwise a lot of times. And I and I think that he has totally reframed for me how I define quality of life which I think for so many myself included before I had him it was under the construct of quantity initially, and now there's such a deeper, more robust way to define that.
Speaker 2:And he is curious and he has his own way to communicate. He is nonverbal, but he has his way to tell me what he wants, and his nurses that know him and definitely his brother and sister, and it's just been really exciting and wonderful to watch. And whether it is that first I think it was mentioned well, I know it was mentioned in the article where he stood for the first time and just all of us had this collective gasp and awe because you just didn't realize how much you took that for granted with your other children. And here he is and he's doing that. And then when he smiles and when he learns this new thing or, more recently, he will intentionally grab my face to him and bring it to him, because that's what I do to him. I grab his face and I go in for a kiss, and that's what he does now and it is intentional. He comes at me with a big old slobber puss face and and is showing me love and affection and affection and is just really special, so we celebrate all the things.
Speaker 3:Yeah, and we as physicians have to be careful not to project onto other people what our ideas are about, like you said quality of life or priorities of life, or imagine what we would do and one of the things that people may talk about is the balance here. You have two other children and how do you balance the really intense demands of Noah's care with the needs of his siblings and how do they participate in his life? I can imagine a detractor would say that you've neglected your other children at the expense of Noah, but that's not true.
Speaker 2:No, definitely not. I think, as I mentioned earlier, we have a routine and a rhythm in our life, and the older two are part of that, but they are also living their best little lives. They get to participate in different activities. They do sports Noah just comes to watch them as a, for instance, generally got to do this really cool aerial camp.
Speaker 2:I'm going to have a she's like going to try out for the greatest showman. I think at some point in her life that's her favorite. And then we've played soccer, we've played football, we have cello lessons and recitals and all of these things, and all of that has been within the last five years with Noah. I do think that they have learned that when we are in a period of sickness with Noah, that he does demand a little bit more attention. But again, that's not the norm, nor is that the majority of the time. And, to be honest with you, I think if my kids were going to be mad at me about anything, it is that I am a working mom and not at their every beck and call because I am delivering babies. It's not Noah.
Speaker 3:Yeah, yeah, okay. Well, so now we get. Let's get into the birth and the hospital and those portions. So one of the things is the article points out is that there's no quote agreed standard of care for trisomy 18 and that parents are often left to battle for information and care. So you told another expectant mother that you often felt the need to prove to other doctors that well, that NOAA was worth their time and worth your effort. So can you speak about? Now? You're the advocate in the hospital, right? Can you speak about your experience navigating a medical system that's often reluctant to help with interventions or offer interventions in what they've all presumed also was a fatal, helpless case?
Speaker 2:I think I do have to start the conversation with me recognizing that I do come with a position of privilege being a physician. So not only are these people my kids doctor, but they're also, a lot of the times, my colleagues, and I think that has afforded me a different place in the conversation than other families have had have had. But, that being said, I think the other thing that I would also want to point out too, before we really get into that question, is that I really do feel that the majority of pediatricians and neonatologists and everybody that has been involved in Noah's care are good people and they're coming from a good place, and obstetricians too, but obviously I'm a little partial to the obstetricians too, but we all got into medical school because we want to help people and we're coming from this place where we think that we're trying to help. So I do also want to recognize that. That being said, I think that it is really easy for us as clinicians to spit out what we've read, and if we're not totally up to date, we don't. We might not be saying the most correct things, and we can say it so authoritatively that it can be perceived as well. This isn't worth, this is futile and there are so many families that I've spoken with that have heard some kind of riff off of that phrase and it can span a gamut of problems whether it is a UTI that simply needs fluids and antibiotics to the more serious conversation do we fix the heart and things like that.
Speaker 2:So for me our kind of biggest area of discussion for NOAA came with the heart repair and if and when and where we were going to do that.
Speaker 2:And then the trach was not necessarily a big conversation between like I think by the time that we made it to the trach, the T, we had been well-established with the team. Noah was three years old at that time and we were at the same hospital that he delivered at and where he'd received all of his critical care. So that trust level had been developed, which was so huge and we could all make that decision. But I think that one of the other mistakes that we make as physicians is assuming that we care more than the parents. And I tell my residents and anytime that I give this talk, this is like my mama bear moment. No one thinks about, cares about or is more concerned about his suffering than I am. It is always on my mind in some place, and if it's not at the forefront, it is really easy to come up and get there. So I think that our job as physicians, when we're counseling, is like go in with that mindset until proven otherwise.
Speaker 3:Yeah, yeah, and I do think we just right or wrong. Never in doubt. We need to give authoritative whatever, and we've reduced very complex issues down. Mainly physicians. We often reduce very complex issues down and interpret them through our own worldview or our own personal desires, and we don't. We'll talk more about communication in a minute, but your job is to counsel other patients Well, and us physicians who are contending with this diagnosis or any medically complicated diagnosis. But what would you tell an obstetrician who's just diagnosed a patient with trisomy 18, who's having that initial conversation that you had many years ago? What's the most important? Unbiased information they need to provide to the patient.
Speaker 2:I think, if people walk away from this conversation with trisomy 18 and 13 is a spectrum of disease.
Speaker 2:It is not universally fatal and that the way that you have that conversation, that first conversation, matters more deeply than any other subsequent conversation you're going to have with him about this. That's what I want you to hear, and I think if you hear me say your baby has a lethal diagnosis, I don't know why you would want to continue. All it's going to do is cause suffering. Do you really want to do that? Well, no, because for the most part, the overwhelming majority of the time, parents want to be good parents, and why would you ever want to make your baby suffer?
Speaker 2:Right, if you led the conversation with yes, trisomy 18 is a life-limiting diagnosis. You are most likely going to have to consider some form of intervention at some point, but the interventions can lead to potentially years. I think that leaves more space and we're not trying to tell people what to do. We're just trying to give them the information to make the decision that's right for them and, ultimately, trusting that a woman and her family know how to make the decision that's going to be right for them.
Speaker 3:Yeah, and I think it's just as an aside, if a person is pro-choice, we're describing the very most pro-choice reference point for counseling.
Speaker 2:I consider myself to be the ultimate pro-choice.
Speaker 3:Yeah, it's not our choice to tell a patient how they should manage this issue or what's right for them or their family, but it is our duty to give them reliable information and an understanding. We're not trying to talk them into anything.
Speaker 3:We're trying to help them make a difficult decision with authoritative information, and so now you're doing a lot to help educate us, with this New York Times piece, the whole world, about the changing understanding or perception we should have of trisomy 18 in particular. This happened before, though, with Down syndrome, and the article talks about the baby doe case and how that led to an evolution in our understanding of Down syndrome. And, of course, then you have, like TV shows that feature Down's characters that are very functional. We watched that when we were growing up, corky and things like that has changed the public perception.
Speaker 3:I think a lot, and so that's happening, maybe a little bit now. And what do you think needs to happen for our understanding and the standard of care to evolve to something that is not what you learned in medical school?
Speaker 2:Yeah, well, I think two big things have happened fairly recently, One actually this past July and then another at the end of 2024. But we've had two really landmark pieces of literature come out in the pediatric literature to really help expand the discussion on care for children with trisomy 13 and 18. And the first that came out in 2024 was essentially like guidelines through the ATS or the American Academy of Thoracic Surgeons, that looked at the discussion about whether or not we offer these children heart surgery, and it really has. One of the big tenets is that we should be considering heart surgery as on a case-by-case basis and looking at the child holistically. And what is this going to? If the trisomy wasn't the thing like the only thing, would we otherwise consider the surgery for this child?
Speaker 2:So that is huge because really the longevity of these children is dependent on whether or not their hearts get fixed.
Speaker 2:They have increased risk of pulmonary hypertension, more severe pulmonary hypertension, more severe pulmonary hypertension, earlier onset pulmonary hypertension, and we don't really know why that is, but we do know that it exists and that is going to be directly related to when you're fixing the heart, if you're fixing the heart, things like that.
Speaker 2:So that's a really important piece of literature that has come out that will help kind of shift the idea of intervention for children with trisomy 13 and 18. The second is actually through the American Academy of Pediatricians and again that just came out a couple of weeks ago that is looking at kind of just guidelines for some interventions, other interventions for these children and how do we more effectively counsel these patients and kind of expand that conversation, if you will. So I think we are starting to see the change slowly but surely. I would really love to see this in some of the obstetrics literature more because again, we're the harbinger of that conversation and if we're not starting the spectrum of disease conversation early, it is so difficult for parents to consider it later. It's just a really hard mindset to shift.
Speaker 3:Yeah, and we'll put links to those articles that you mentioned if folks are interested to check those out. So well, so looking forward. Obviously this has changed you as a person and as a physician has it altered the way.
Speaker 2:Understatement of the year.
Speaker 3:Howard, yeah, yeah, has it altered the way? I know it has, but tell us how it's altered the way you approach patient counseling, particularly around prenatal diagnoses or difficult prognoses that we encounter.
Speaker 2:Yeah, I think the first thing Noah did was teach me that I in fact do not know everything and I don't feel like I was just super cocky before Noah, but I definitely was cockier than I thought so that he has definitely brought humility into my practice and allowing for there to be more unknown and being okay in that space, and I think that he has taught me such a deeper level of empathy and really trying to meet people where they're at.
Speaker 2:And one of the phrases I have found myself using more and more is like how can I be on this journey with you? Like in what role or capacity do you need me? And it's a little bit of a unique place when I'm counseling somebody, or if another physician has asked me to speak to their patient who has the diagnosis which happens not infrequently. Actually, I get calls all the time Like how can I help you? Do you want me to be a mom? Do you want me to be more of a physician? And helping you with the lip shirt, like where, what can I do for you? And I think that it has just slowed me down to allow for that conversation of decision-making to really evolve.
Speaker 3:So what are your hopes for Noah's future the article talks about he uses a frame to help him prepare to learning to walk, and things like that. What milestones, big or small, do you celebrate, are you looking forward to?
Speaker 2:It's really crazy. Crazy, actually, and probably fitting the day the article came out, so online, that was Thursday. He was in his gate trainer, which is kind of like a it's a different stand than the one that they were mentioning, but there's kind of like a saddle and he can sit in it and it helps him to get used to moving his legs. He was in that and he was trying to take a step and you could see that he was trying to work out how to move his feet and I think that's just huge. And I my hopes for Noah are to continue being curious and expressing himself and I think that he is going to figure out how to walk in his capacity, out how to walk in his capacity and I think my job as his mom, and same for my other two, is to continue to provide opportunity for them to grow and learn and remain curious and get to their biggest potential. And here's this five-year-old nonverbal kid sparking a huge conversation right now. So I think it's great.
Speaker 3:And for the listeners we're recording on August 2nd this will come out in mid-August, but the article is July 31st 2025 for people in the future listening, and again we'll put a link there that you can read the article. So to kind of wrap up the NOAA portion of this conversation, because I want to talk about you, you now teach about these difficult conversations, so we want to hear some of that. But bottom line, for physicians, for nurses, for anybody who's listening about this, what's the single most important message that you want us to take away from your family story?
Speaker 2:I think that trisomy is a spectrum and that there is always room for a little hope.
Speaker 3:Yeah, okay, well, so I wanted to finish up with you with what you've learned about difficult conversations. Again, one of the hardest parts of our jobs is giving patients bad news, and that might be this sort of information. It might be a ton of other things that affect either fetal demises or miscarriages, or children that are going to have special needs or need more care for a variety of disabilities that are genetic, structural, chromosomal, there's all sorts of things or even that we have to put your baby in the NICU at 24 weeks because you have horrible blood pressure or something like that.
Speaker 3:There are a lot of difficult conversations in OBGYN and we went into OB you and I did anyway for happy outcomes and happy patients. It's mostly an upbeat, great thing and you're taking pictures and everything's wonderful. But then we have these abnormalities or these problems or these bumps in the roads that come along. So talk to us a little bit. It's always unexpected. It's always nobody gets pregnant with the idea that I'm going to have a baby with a problem or I'm going to lose a baby or I'm going to whatever it is. So talk to us a little bit about breaking unexpected news and specifically, if you will, the spikes protocol.
Speaker 2:So there are a lot of different protocols out there to teach how to break unexpected news, because I think one of the things that we do as physicians is try to fill the space with lots of medical words and jargons, because it's really uncomfortable to sit with somebody in a sad emotion a lot of times and what the spikes protocol does is kind of give you a framework for how to have this conversation. So you're not doing that as much. And the other thing that I really love about this protocol in particular is that it's a validated protocol. It actually arose out of cancer research and how oncologists would be breaking the news to families about cancer. So, like you were saying, it can apply in a variety of situations. But basically spikes stands for situation perception, invitation, knowledge, emotions and summary, and basically what you would do is, when you're getting ready to have that conversation, you're going to kind of try to get them into a quiet spot. So, again, like we were talking about earlier, it's a little bit difficult because a lot of the times now we're having these as a phone call. So what I do if I'm going to have to break news over the phone is hey, do you have a few minutes? Can we like we need to have a conversation. Are you in a spot where we can do that right now? Do you have who you would want to be with you for a conversation with me? And? But otherwise it would be if you're in the hospital setting, turning your phone off, getting down, sitting down eye level with these, with your patients, and creating this like safe space.
Speaker 2:And then the next thing you're going to do and what I just to pause for a second what I want you to kind of pay attention to throughout this process is how many times you are inviting yourself into the conversation. You are not presuming you are asking there's a lot of questions from you to them that way. But okay, so going back to perception, you're going to ask them hey, what do you understand about the Nipah test that you had done? Or what do you understand about the ultrasound, or what brought you in, or whatever. And you do that because that's where you're going to start the conversation at right. You're not just going to assume. Once you've established that, then you're going to ask them can I share with you what I think, or can I share with you what these results were, or whatever the situation is? And once you do that, you will give kind of like the one-liner. So I'm sorry to tell you, jacqueline, but your results came back positive for trisomy 18, or we're going to have to admit you at 24 weeks because you've got severe preeclampsia, whatever it is.
Speaker 2:And the hardest part of this whole process is once you give the news, once you have changed this person's life forever, you have to stop and you need to pause for three seconds and allow them the opportunity to absorb what you just hit them with. And it might be longer than three seconds, but this is that really tender moment where we want to fill the void and we must not do that. And once you give them a minute or a couple of seconds, then you can start giving them those bite-sized knowledge bits and start to explain what that means and check back in with them frequently. Obviously, you're going to be managing emotions and that can be a spectrum of its own, whether it's numbness, it's tears, it's anger there's. The human experience is vast and you will see it all at some point in this conversation. And as you get toward the end, it's really important that you continue to check back in with him and recapping for them.
Speaker 2:But you're going to summarize okay, this is what we talked about. This is what I think should be our next steps. Are there any questions? Where are you at? And then you try to end on the same page as much as you can.
Speaker 3:And we talk all the time theoretically about the idea of shared decision making, but your story is full of examples where we perhaps fail patients in that by again projecting our own desires or worldview or whatever onto patients, and then we use language that does that projection for us, where we often, unfortunately, are trying to talk patients into doing what we think they should do, not necessarily what the patient wants or what fits with her worldview or desires or things like that.
Speaker 3:So give us some examples of words and language that we use that can be harmful, and talk a little bit about implementing a real model of shared decision-making.
Speaker 2:Yeah, so there has been. There've been a lot of phrases that I have heard from families that it's been really difficult, and I think my the best way for me to help somebody understand that is like what would you say if I said any of these phrases to you? And it's like this pregnancy, this baby, is going to be so hard it's probably going to break your family or your children, your other children not going to get any attention and this baby is going to suffer. You don't want to make your baby suffer, right? Or it's futile to surgically intervene for your baby. Are you sure you don't want to terminate? Are you sure you want to give your baby antibiotics? Are you sure you don't want to let nature just take its course? And I just really encourage you to sit with how you would feel if somebody said that to you. I don't care what the diagnosis is.
Speaker 2:That's not how we talk to people in a respectful way and maintain dignity. And again, I think that so many of us are trying to come from a good place. I really do, but we fall really short when we have conversations like that. So the way to really perform shared decision-making is by entering into a conversation with trust and mutual respect and really focusing on language that can be inclusive. And I think that we don't realize and we're all human and of course I have my own bias, you have your own bias and it's hard to lose that completely but to really be intentional about trying to remove that as much as possible when we're just talking about these are your options and going from there thinking so many times in my career.
Speaker 3:People will get to the end and they'll ask me well, what would you do, doctor, or what would your wife do, or whatever, and I don't want to answer that question. No, it's a tricky question, it's a loaded question because it's not my.
Speaker 2:It's not mine to answer, it's not mine to live in Exactly.
Speaker 3:Yeah, yeah.
Speaker 2:And I think that's what I say honestly, because I do. I get that question all the time and I say, well, if we're talking about trisomy, you know my answer. This is what I chose, but I am different from you and different from somebody else, and I said so. My job at this point now is to be a bit of a sounding board and let me help you just like I need to help you determine what's going to be best. And it's a balance, because I also think that if we're not careful, we can make patients feel like they're abandoned and they just have to make all of it their own. So it's that art of medicine, if you will, where we have to guide. And, yes, the statistics do show this option or this antibiotic might be a better option than not doing the antibiotic or whatever the case is, without telling them. This is the only way to do it.
Speaker 3:The language you use is very important, and when things go wrong in a pregnancy patients, they can become traumatized by these experiences. They enter their next pregnancy, or maybe even their first pregnancy, having been traumatized from events, and then that legacy of trauma is present and influences everything that happens going forward, and so the ideas of trauma-informed care for patients like this become very important. So can you talk a little bit about that and how we can take a trauma-informed approach to caring for patients like you?
Speaker 2:I think that we could do a whole other hour on trauma-informed care and maternal health, mental health and all those things, but I think, just as a quick tidbit, I think that we need to talk about trauma-informed universal precautions, and that is verbal, nonverbal and environmental factors. So verbal again, that concept of asking and inviting yourself always ask is it okay if I do this, even if it's just to check her cervix? You don't know if she's had any kind of past history that would make that more difficult for her. So always asking, never assuming asking if they want you to explain what you're doing. Again, just always inviting yourself in. First the nonverbal cues, so making eye contact, sitting when you're talking don't stand over somebody, so you're not in like this authoritative stance, you're meeting them where they're at. And then the environmental cues, so keeping the light soft, the sound soft, your tone soft, different things like that can really help minimize that trauma trigger for patients and I think that we need to keep in mind that moms whose babies end up going to the NICU have a 30 to 70% chance of developing postpartum depression. And being mindful and proactive about that during the birth and just that immediate postpartum period, this can be so helpful in reducing the trauma that they leave the hospital with. And I think, honestly, that was probably one of Noah's first lessons to me. And I, going back to what has he taught me? The empathy that I have for moms in the NICU. I just I didn't know what I didn't know, but now I'm going to tell you.
Speaker 2:So I think that if you really consider your postpartum day one, you're bleeding, you're recovering from an incision or just popping a kid out of you, your boobs are hurting, your milk is trying to come in, you're stressed out because maybe your milk isn't coming in and you don't know how you're going to feed your baby. Your hormones are in a free for all. You are definitely not sleeping. You, your baby, your hormones are in a free for all. You are definitely not sleeping.
Speaker 2:You have alarms that are going off that you're not used to, and you're in this like constant fight or flight mode and then, on top of all of that, you're completely useless for this baby, that every single fiber and maternal instinct in you is firing off in your body saying go protect this baby, go feed this baby, go care for this baby. And you cannot. You just have to sit there and watch and it is honestly the worst feeling. So I say all of this not for you to make to feel bad for me or anything like. That's all that's five years ago, but it is to just again hold space for these patients, because they're going through a lot and you don't know until you end. The tenderness and the compassion that these really brave moms need can come from us first, because they've known us that we've taken care of them for nine months.
Speaker 3:Yeah, yeah, it's amazing. Great literature teaches us our lives, teach us how everything changes in a, in one phrase, one sentence, one thing. It's often something that you didn't see coming, that you didn't know about, and then your life has changed forever. And that's what this story is, and that's what we do so many times for patients, even when things aren't that negative. We see patients every day as OBGYNs whose lives are changed forever, with even sometimes good news that we give them, and all those things are crucially important. So maybe we will have you back on and we'll do some of these crucial conversations for OBGYNs and things like that, because that does deserve its own time, I think. Own time, I think, and that's the real takeaway, beside from the specifics about trisomy 18 and a thousand other complex neonatal and infant conditions that we sometimes encounter.
Speaker 3:All of it has that commonality that we should spend some more time on. We were going to maybe talk, if we had time, about the history of detection of birth defects and chromosomal and genetic stuff, and I think we'll just save that for maybe Antonia and I to do at the end of the next episode. We like to do these history segments, but we've spent time more valuable with you today and we'll talk about the history of ultrasound and our different amnios and CVS and the different screenings that it's gotten us here, and with the future, that looks like a little bit too, as a lot of this technology has gotten so much better for early detection and diagnosis. We'll do that next time and thank you for your courage and thank you for that New York Times piece.
Speaker 2:Well, thank you for having me.
Speaker 3:There are a few people that have the courage to put their lives in an hour-long piece in the biggest newspaper in the United States, but people are going to learn so much from it.
Speaker 2:So I know, and I do just want to take a minute to thank the author, dr Sherry Fink, and the photographer, stephanie Sinclair, for just capturing my family and honoring them and what was a really intimate, a really intimate interview and things, and I just really appreciate the space that she helped for us. So thank you, sherry and Stephanie.
Speaker 3:Yeah, very well done. Hope everybody reads it and we'll have you on in a few months and we'll do. We'll do some more.
Speaker 2:Sounds great.
Speaker 3:All right, we'll see you soon.
Speaker 1:Thanks for listening. Be sure to check out thinkingaboutobgyncom for more information and be sure to follow us on Instagram. We'll be back in two weeks.