This is a rerun of a past episode that Ashlyn & Emily want more people to listen to because it is loaded with invaluable knowledge and support for parents expecting a child with medical needs. We will be back with new episodes after Thanksgiving!
Navigating the complexities of parenthood is a challenge in itself, but what happens when you add the hurdles of medical needs into the mix? Emily had the privilege of having a heart-to-heart talk with our guest, Elaine Bishop, a seasoned care coordinator and certified nurse midwife, who has been our guiding light through the fog of the shock from the anomalies found in Charlotte at 20 weeks pregnant. Elaine's story of resilience and hope gives comfort and inspiration to all parents paddling through the same waters.
Healthcare for children is a labyrinth, especially when they can't voice their needs. Elaine has turned this challenge into her life's work, advocating for children's health from the womb to the world. Our conversation delves into the tough realities of medical treatments, the heartache of seeing your child in pain, and the triumph of standing as their voice. We also unpack the power of parental instinct - it's the unquestionable partner in your child's care team. Make no mistake, you have the right to question, understand and insist on informed consent with any medical treatment.
As the saying goes, joy and sorrow are inseparable. Elaine's wisdom shows us that the silver lining in this clouded journey is the ability to trust your instincts, adjust your expectations, and continue finding joy amidst the heartache. How do we steer through unexpected pregnancy challenges? How do we set goals for our children's healthcare? How do we advocate with trust? Tune in for this inspiring conversation, and let's navigate parenthood with hope and resilience, together.
Get your copy of She is Charlotte: A Mother’s Physical, Emotional, and Spiritual Journey with Her Child with Medical Complexities by Emily K Whiting on Amazon
To get more personal support, connect with us directly at: CharlottesHopeFoundation.org
Email: Contact@CharlottesHopeFoundation.org
Facebook: Charlotte's Hope Foundation
Instagram: CharlottesHopeFoundationInc
This is a rerun of a past episode that Ashlyn & Emily want more people to listen to because it is loaded with invaluable knowledge and support for parents expecting a child with medical needs. We will be back with new episodes after Thanksgiving!
Navigating the complexities of parenthood is a challenge in itself, but what happens when you add the hurdles of medical needs into the mix? Emily had the privilege of having a heart-to-heart talk with our guest, Elaine Bishop, a seasoned care coordinator and certified nurse midwife, who has been our guiding light through the fog of the shock from the anomalies found in Charlotte at 20 weeks pregnant. Elaine's story of resilience and hope gives comfort and inspiration to all parents paddling through the same waters.
Healthcare for children is a labyrinth, especially when they can't voice their needs. Elaine has turned this challenge into her life's work, advocating for children's health from the womb to the world. Our conversation delves into the tough realities of medical treatments, the heartache of seeing your child in pain, and the triumph of standing as their voice. We also unpack the power of parental instinct - it's the unquestionable partner in your child's care team. Make no mistake, you have the right to question, understand and insist on informed consent with any medical treatment.
As the saying goes, joy and sorrow are inseparable. Elaine's wisdom shows us that the silver lining in this clouded journey is the ability to trust your instincts, adjust your expectations, and continue finding joy amidst the heartache. How do we steer through unexpected pregnancy challenges? How do we set goals for our children's healthcare? How do we advocate with trust? Tune in for this inspiring conversation, and let's navigate parenthood with hope and resilience, together.
Get your copy of She is Charlotte: A Mother’s Physical, Emotional, and Spiritual Journey with Her Child with Medical Complexities by Emily K Whiting on Amazon
To get more personal support, connect with us directly at: CharlottesHopeFoundation.org
Email: Contact@CharlottesHopeFoundation.org
Facebook: Charlotte's Hope Foundation
Instagram: CharlottesHopeFoundationInc
You are worthy of happiness and joy and parenthood, and this happening to you isn't your fault. And it sucks and there can still be joy in it, and that probably isn't apparent right now. There is still so much joy to be had in raising these little people, even though it's not going to look like what you thought it would.
Speaker 2:Whether you've just been blindsided by your child's diagnosis or you've been in the trenches of their complex medical needs for a while, empowered by hope, is here for you. Though we wish you didn't know this heartache, we're so glad you found us so together we can walk this journey in hope.
Speaker 3:Hello and welcome to the empowered by hope podcast. We are thrilled that you are here with us today and we have a very special guest with us today, miss Elaine Bishop and Elaine, we have worked very hard to make this happen. We have been trying to schedule to have Miss Elaine on our podcast because we know that you all are going to fall in love with her as much as I already love her. And so I mean seriously, elaine, we had floods, we had sickness, we had what else? I forget what else.
Speaker 1:Now, Childcare failures or interruptions or yes, all the things.
Speaker 2:Power outage.
Speaker 3:Oh my gosh. Yes, so we have decided that this obviously is a very important interview, because the universe is trying to make it not happen, so we're going to say it's happening. So anyway, we just also spent the last 15 minutes trying to get the audio to work, but we are good now, so we're thrilled to be with everyone who's listening today. Elaine is a I would like to call you a great friend, even though I was a total stalker. Finding you again, so I'm glad you did.
Speaker 3:Oh my gosh, so I met Elaine. I was probably a day or two into having learned no, I was like four days maybe into having learned that our baby, who I was pregnant with at the time, charlotte, was not healthy, and I got a call from Elaine at the time she worked for the hospital that my maternal fetal medicine doctor was there and she was the care coordinator. Now, at the time, I had no idea what maternal fetal medicine was, nor did I know what care coordinator was, but I knew within a few minutes of talking to you that you were going to be my go to person, because one of the first things that you said and I remember it distinctly and it's even in the book. She is Charlotte. How you said, emily, I am so sorry that you, you know, have found yourself in this position. No mother wants their child to be sick.
Speaker 3:And I just remember feeling like you. That was basically you taking gauze and shoving it into my you know heart. That was bleeding profusely. Yeah, so that's when I knew this is going to be my go to person, because she is the one who knows how to not only navigate the medical system, but she also recognizes, you know, that we as human beings are going through a really hard time. So that is one of many reasons why I wanted Elaine on this podcast. So, with that introduction, I'll throw it over to you, elaine, if you want to share a little bit about yourself with those who are listening, and then, of course, the whole episode will be learning more about the amazing Elaine.
Speaker 1:Well, thanks, emily. I am humbled by your introduction and by being invited to be here. I mean, I felt like in the role of the care coordinator, I was really just like bridging this enormous gap that parents faced in the healthcare system and still face in the healthcare system, and it was really, really an honor to be there alongside you during that time and I'm so glad that we met, even though it was under really really hard circumstances. Yes, yeah, so a little bit about me. I'm a certified nurse midwife.
Speaker 1:I worked first in labor and delivery as a nurse for several years and then decided that I just kind of wanted more, more, more of a role in people's lives, and so I went to school to become a midwife and I caught babies for a few years until I had my own baby and I really felt like I really wanted to be more present in his life than the job was, allowing me to be hours wise, and so I started looking at how other ways that I could be with women because that's what midwives are with women for a lifetime. So how else could I be there? And this job of care coordination, fetal care coordinator came up. That was my official title and, oh my gosh, that job was so amazing and I loved every minute of it. So I worked with the maternal fetal medicine doctors, but I also got to work with the pediatric care providers, and so it was like that transitional time from baby in the womb to baby outside in the world and the transition of care from pregnancy care to newborn care and in circumstances where you know sometimes you have how many specialists involved. Right yeah, some people are lucky enough to not need any, some people need one or two, some people need a lot, like your sweet little.
Speaker 3:Charlotte, I counted the other day it was over 20. I just stopped counting.
Speaker 1:I just stopped. It's like beyond, like you have walked a path beyond what most people think is even real, right, yeah, yeah, yeah. And even working in healthcare for a decade before having that job, I had no idea. I had no idea what parents faced, and so I learned every single day that I worked there. There was just no end to the learning and the I mean our whole healthcare field. I think one of the biggest fallacies that I think that we as a culture believe about healthcare is that we have answers. Yes, sorry, I'm laughing.
Speaker 3:This is my everyday life.
Speaker 1:Yes, I would imagine that his home for you, because everybody wants answers and we are trying to find them right, but the reality is that we don't have a lot of answers. And how do you make peace with that and live every day with that?
Speaker 3:That's tough, yeah, yeah. I remember having some of these conversations walking down the hallways in between appointments where you were showing me how to make it through this massive hospital campus, literally holding my hand like okay now we need to go in this elevator and now we're going to go down this hallway and into this waiting room and just having brief moments of conversations like this.
Speaker 3:And it just at the time there was no Charlotte Tope Foundation and we didn't have a diagnosis, so there was no real community of other parents to turn to. And so you, as the fetal care coordinator, you were kind of my go-to, and just being able to have it doesn't take much Just that one statement you made in the first call, or just the statement you just made of. Sometimes we don't have the answers and that's really hard. It just helps normalize the roller coaster of emotions we're going through. And while we're still going through those emotions, at least we're not beating ourselves up. For are we crazy for having all these emotions?
Speaker 1:Yeah, yeah, yeah, that's a complexity you do not need to deal with. Right, exactly yeah.
Speaker 3:And also remember we would go into appointments and you would sit there and hear you might not be able to be there for the whole thing, but at least for when the doctor would finish up their testing and they would give the results or their thoughts on next steps, and then you would be able to say, okay, what questions do you have? And you would always say I'm not the one that's going to answer them, but I'll get you the answer, and that is invaluable. And, truthfully, what I have found and what I'm very passionate about now is you were saying that there is this enormous gap in healthcare that you were able to begin to fill with maternal fetal medicine. And I noticed very quickly, as soon as we stepped off the maternal fetal medicine train and entered the pediatric train, what a huge gap there is, because there is no pediatric care coordinator quite to the level as a maternal fetal medicine care coordinator, despite me begging and asking anyone and everyone to please create such a position. But someday we're going to do it, elaine. Yes, I love it.
Speaker 1:Yes, it's necessary.
Speaker 3:Yeah, absolutely. So there's so many different directions we can go with this conversation. But I do think, just for some levity, I literally did hunt you down about a year ago. So Charlotte is now five, and when we were pregnant we were introduced to Elaine. She walked the journey of the pregnancy with us and then we had the baby.
Speaker 3:We were in the NICU at that point we were passed to neonatology, which was phenomenal, and so you and I would catch each other in the halls every once in a while and chat, but at that point, really, our professional relationship was done, and so then we lost touch. And then I started writing Charlotte the she Is Charlotte book, and at the end I thought, ooh, I would love to share this with Elaine and see if she would endorse this. So I called your old number and I got somebody that's new in your position and I said your name and of course they all knew you and loved you, and so I was like, well, somebody give me her number. And of course that's not really okay for them to do. So they were like, well, if you Google this, you'll find a way to reach her.
Speaker 3:So I went on Google and I Googled you and then I think I just found a random email somewhere and I was just elated when you responded.
Speaker 1:So I remember getting your voicemail. I think you somehow, yeah, you left me a voicemail and, oh my gosh, I was like so excited to hear from you. I remembered you immediately and like I mean it was such a light to hear your voice and hear that Charlotte is doing so well despite having so many challenges.
Speaker 3:Yeah.
Speaker 1:And I know that she still has a lot of struggles, but I was just really happy to then get to zoom with you and get to see her, and that was such a joy.
Speaker 3:Yes, Such a joy. It's got to be fun to. I don't want to put words in your mouth. I can just imagine that as you follow a pregnancy and then you're in the newborn phase and then to see kids years later thriving. It has to be such a reward, right.
Speaker 1:Oh my gosh, yeah, so fun. That's something I remember a lot about visiting the NICU. Occasionally I would go down to see families who we were currently working with and there would be families visiting Like I remember seeing a one year old who was talking and I was just blown away Like oh my gosh, there was a time when we didn't know if you were going to make it. And here you are talking to me. It's so incredible.
Speaker 3:Oh my gosh, that's amazing, yeah, yeah.
Speaker 1:Yeah, that is one thing about that role, and seeing children go through just so much turmoil is like. These babies are such incredible little beings and no baby, no baby should have to go through the pain and the suffering and at the same time, no-transcript. Oh, what a lesson in joy and resilience and overcoming to watch these little ones still play and smile and laugh and like, live their little lives.
Speaker 3:Yes, you know? Yes, I think Ashlyn will be okay with me sharing this. She just texted me, so she's in London, uk, right now and they're recovering from their surgery, which was a success for all you listeners out there, and soon we'll get her back online and hear more details, but for now she's still trying to get discharged, and all of you who have tried to be discharged before know what a project that is.
Speaker 3:So she's still trying to get pharmacy lined up and all that stuff. But she just texted me right before we hopped on this podcast and said I'm feeling heart sick because I keep having to hold her down for IVs and to take meds that are yucky and then she has these bladder spasms and we're having to do all these treatments and it's just so hard to have to feel like you're inflicting this on your child and yet literally a second after it's done, they forgive you and they go back to playing and being joyful. It's astounding, and so that's what she was saying was just like A blown away by their resilience and B she's feeling heart sick over all of that and I think all of us who have walked this journey have felt that at a time or maybe frequently. I mean even Charlotte. We're having to take a new medicine right now, and almost always new medicines cause her to vomit, whether they're yucky or not, as she calls them yucky medicines, because she's got a lot of medical trauma and she's been introduced to all these new meds and her reaction. It's literally a visceral reaction. Her body just gets hives immediately and she vomits regardless of the medicine.
Speaker 3:But this time she was able to do all the deep breathing and all the things we've taught her and she got it down. And about 20 minutes later, when she was ready to talk again cause she always goes, I can't talk cause my mouth has to be shut or else I'll throw up, poor kid, I know. So 20 minutes later she opens her mouth with a big smile and she goes Mama, I didn't throw up. You should be so proud of me. And so I'm feeling these conflicting emotions, like what Ash is talking about is like pure joy for her and for her success and also such dread or heartache that she even knows this kind of struggle. You know, at five years old, having to try to swallow down meds is just like oh geez. Yeah, it's incredible, yeah, it is. So. Now I think you.
Speaker 3:So we're doing an advocacy series and this is part of it. I think you are the queen of advocacy, and I also think that knowing how to advocate for your child when they're still in the womb is really challenging, because you're kind of not used to advocating for them yet Right, yeah, gotcha. So, and also you're kind of in shock and you're still navigating. You know all of that. So I guess I'm just curious from your years of experience, what are some ways, just basic things that parents could do that help them be their kids advocate? That's not like I think. Sometimes we say advocate and it feels like this big job that you have to be trained for, when in fact sometimes it's just being the voice for the baby that doesn't have a voice you know. So I'm just curious what have you seen in terms of successful advocating?
Speaker 1:Yeah, you bring up a good point when you say like it's like a big event, it's a big thing and I think advocacy sometimes it can feel synonymous with conflict. Yeah, I can, it doesn't have to carry that negative connotation. In some cases it will right.
Speaker 1:Depending on how your efforts are perceived, but one of the first steps that I think is so important is a basic understanding of your baby's condition. You know so many families would call me and I would just say I know from like reading your record and here and talking with the doctor, I know what's going on with your baby. But can you tell me in your words what's going on with your baby and I can't tell you? I mean, a very small fraction of people would actually be able to describe back to me what they had heard. Wow, and that's not a fault of anyone's values, no, a trauma response. Right, you're sitting in that ultrasound appointment expecting to hear if you're having a boy or a girl and your baby has a hole in its heart or your baby has, you know, xyz and your brain just shuts down and that's a normal response. And so, first of all, forgive yourself, do not beat yourself up for being a human being with human responses, that is, you're allowed.
Speaker 3:Yes, yes, I am quoting that in our show notes.
Speaker 2:I'm writing it down.
Speaker 3:Good, not beat yourself up for being human. You're allowed.
Speaker 1:I love it. That's right. That's right. And so, yeah, just like being gentle with your own response to these situations, and everybody's going to be a little different. Some people are going to immediately want more information and some people are going to back off and say I can't right now. I need time to assimilate this into my experience before I can talk details. Right, yeah, and then finding someone who can interpret for you. In most cases, that is still your healthcare provider, and it's okay to say to your provider I don't understand you. I need you to break this down for me. Explain it like I'm five. This is very basic verbiage. I need the most basic explanation, and this is something that I loved about most of the pediatric providers on the various teams is they would draw illustrations and I don't know if that's like from the pediatric training, like working with children, but drawing pictures sometimes can help solidify, like what is going on, right?
Speaker 1:Yes, so don't be afraid to ask for what you need. This is something like I would tell women in labor all the time as a midwife is ask for what you need. We don't often feel like we have full permission to do that, but you absolutely have every right to ask for what you need and if that's more information, if it's more time, if it's you know and sometimes that's going to take intention and you leave that first visit and you go home and sit with it, it's going to take time to settle in and figure out what do I need, right? So I think that's a really important first step is being able to ask for clarification, yes, From your provider.
Speaker 3:Yes.
Speaker 1:And with our current healthcare system, the way it is, the time pressure in visits and the you know being shunted through office to office, that can feel like a really big task. So it's not easy to ask for a provider's time or simplification of an issue, but it is your right to do so.
Speaker 3:Yes, and I've even. I would even go so far as to say, you know, if you are at the end of your 15 minute window that you know you have with the doctor, to even say I have a lot more questions than 15 minutes can lend, you know that can allow. So when can we reconnect, or can you stay longer? Or what is it going to take because these questions need answered, because you, you know, I think you gosh, I knew this was going to be the best interview because you're so right you can't advocate for your child if you feel like you don't have a basic understanding of what's going on Now. Do you need to have a medical degree on it? Absolutely not.
Speaker 3:I have an entire episode that just aired a couple weeks ago about. I think the title was you don't have to have a medical degree, but a basic understanding so you can really be able to weigh your options. And knowledge is power, you know, and you can feel like you are one of the team in your child's care rather than just the one showing up to appointments and the doctors are running the show, you know and that's ultimately going to be the best for your kid when you are part of the team, and that's what the doctors want to.
Speaker 1:Yeah yeah, yeah, I mean, hospitals have patient bill of rights, like there are in writing. There are your rights are there on paper and those are to be followed. Right, those aren't suggestions. Yeah, and like, one of the biggest things that providers are taught is you have to offer informed consent. That's a legal thing, it's a medical, it's a ethical thing, and you, a provider, speaking to you and saying the words that they want to say, thinking that they're explaining something to you, does not count as informed consent If you don't understand it.
Speaker 1:Informed consent is your provider meeting you where you're at in a language that you can understand and ensuring that you have grasped the information that they have provided, and so there has to be a follow up from the information giving side of things, where there's a check in. What did you get from all that I just said to you? Yes, where you can have a chance to verbalize back to your provider this is what I heard and this is what I understand so that there's room for correction, for clarification, for policing and for actual informed consent before you agree to something for yourself, your child, does that make sense?
Speaker 3:Yes, yes, and it's also Complicated, yeah.
Speaker 3:And that's a good reminder, too, that you have every right to you know. If the doctor gives all the information to you and then goes to head out the door and doesn't do that back and forth check, you can say, okay, here's what I heard. Did I hear it correct? Yeah, I find myself doing that at least probably twice a week. That's amazing. Right, you know, yeah, like no, let me try that again. You know, yes, yeah, that's so important. Yeah, so okay, I'm writing that down too. So repeat back to the doctor what you heard. I love that.
Speaker 1:Yeah.
Speaker 3:So, and if there's no, you know I'm sure more ideas will come organically as we discuss, but off the top of your head, are there any other things that you can think of that? You know, just real basic advocacy thoughts. When a parent first receives that news and I kind of consider, if you receive a news, you know, a diagnosis, or knowing that your child's not healthy while pregnant, that whole pregnancy feels kind of like the initial stage, you know, because it's a pretty short stage right, of learning about your child's diagnosis. So it's likely going to be around the 20 week mark, maybe sooner if it's genetic testing and that kind of thing. So you've got about 20 weeks maybe to adjust to the news and in often cases not right.
Speaker 1:Yeah, yeah, absolutely.
Speaker 3:Yeah.
Speaker 1:So another, I think, really important thing to consider in advocating for yourself and your child is do you mesh with your provider, your provider meeting your needs, and I will. I'll share a personal story here. When I was 16, I was diagnosed with a birth defect that we didn't even add until I was that age and turned out I needed emergency brain surgery to decompress a piece of my brain. That was like growing out the bottom of my skull and causing a whole bunch of pain. And we went to the first neurosurgeon that we saw. He explained it like your skull formed too small for your brain, so it's pushing your brain out the bottom of your skull and it's like causing you a lot of pain. And I'm 16, I'm trying to cope with this right, and I'm like I like to think of it that my brain is too big for my skull. And he's like no, that's not how it is, your skull is too small for your brain. And we left that appointment and my mom was like we're not going to that doctor, nope, we're going to a different doctor. Yes, she played that advocacy role for me and we found someone who was able to be a little more compassionate and understanding and role with. You know, like you don't shut someone down who's trying to cope with something terrifying, right? Yes, and she found a different neurosurgeon that she was comfortable with that. I mean, I wouldn't say I was like comfortable with them because I was terrified, but you know, she really played that role for me in finding someone who I felt more comfortable with and more related, relatable.
Speaker 1:Yes, and that's absolutely also your right as a parent, as a patient. Your providers work for you. You're paying them, you're paying for your insurance. Your insurance is paying them. You have every right to receive the service that you need and that's not to say like it's a you know you're looking for like a posh hotel stay when you go to the hospital. That's totally different. But you do deserve to have your needs met by your provider within reason. And someone who is dismissive of you, someone who is not responsive to you, it's absolutely within your rights to say this is not a good fit for me. I need to find someone who feels like my advocate, who feels like they care about me. Those providers are out there. Yeah, it can feel really freaking hard to find, yes, but they exist and in the end, a lot of times, the search will have been worth it to find that person who you feel like really cares about you and your child.
Speaker 3:Yes, that is such an important lesson. Honestly, I don't think I even considered that or gave it any headspace till about the last year and we're at this point concluding pregnancy six years into it. Yeah, and I mean we've had phenomenal care, but if I look back, would there have been things that I probably should have changed? Yeah, Now, at the time where we in survival mode and it was just like we're literally surviving one day at a time, yes, but I think just having that permission and even just the awareness that you can change providers For those of us who have only known health until we've had a child who's not healthy, we've only known staying with one provider all your life and they do everything and that's that right and that is not the world of medical complexity. But it takes a while to learn that. Yeah, yeah.
Speaker 1:Yeah, and it can feel really scary to change, to make a change when you're already, like I am, hanging on by a thread.
Speaker 2:Yeah.
Speaker 1:I don't know if I can deal with one more thing and then to move to a new provider who you have to maybe like catch up with, and that can feel really huge, yes, when everything already feels really hard, yeah. So again, be gentle with yourself and it can happen on your own timeline. There's not a right way to do any of this. You know that.
Speaker 3:Yeah, which is frustrating? I guess it is. I want the ABC. Here's what you do Step one, two, three, yeah, yeah.
Speaker 1:So does my brother-in-law asked me the other day, probably a month ago we didn't get that chapter in our parent book. Could you share it?
Speaker 3:with us. Yeah, it's covered in highlighter and yeah, oh my gosh, I marked pages 3,573 for you.
Speaker 3:Oh my gosh, it would be so nice Put it in podcast form so we can listen while we're on our way to the doctor's office. Yes, oh my gosh. Yes, I so wish that we had that. But you know what we talk about a lot in this podcast is you ultimately? And actually Ash and I were just texting about how one of our upcoming episodes need to be about trusting your gut, because more often than not, you really do know what's best for your kid.
Speaker 3:Yeah, now, that's not in absence of medical insight, obviously, but given the information that you have, you really do know in your gut if it's time to just find another provider or time to search for other options.
Speaker 3:I mean, a good example in our world is we were told for gosh, three years that for Charlotte's abdominal pain she would outgrow it and to just let it be. And I was crazy mom, just like going crazy to find an answer for three years. And we finally found one. And it's a very complicated answer and it's multiple different specialties involved and all that stuff. But we have our little girl back. She's not in excruciating pain anymore and she's joyful. And oh my gosh, that hunt was worth it. And that gut reaction of like that's not good enough, that's not going to work for our daughter, even though we've gone through 20 different people and they're all saying the same thing and I'm saying no, yes, you just know, as a parent, and I think trusting that gut is really important, obviously with a lot of knowledge and equipped with the answers that you need for that, you know, for that gut to be right, but oftentimes it is right.
Speaker 1:It is, and you know we all say like it's a gut feeling. What that gut feeling comes from is years of experience. It might not be exact experience in the field that you're having this feeling about, but it's your brain assimilating a lifetime worth of information, signals, feelings, and putting it all together and reminding you. I feel like I've been through something like this before. It might not have even looked in the same realm as this particular instance, but I came out the other side feeling like something could have been different, and I'm remembering that and I'm going to speak up about it this time. And that's so incredible that you did that for Charlotte, and it is some of the hardest work I'm sure that you have ever done.
Speaker 3:Yes.
Speaker 1:And it's scary and you, feelings of insecurity come up and wondering like am I, you know, the pain in the butt, parent? Am I, you know? Yes, yes, you go, be you go, be that person for your child. You are their protector and their advocate and, as hard as it is, that is your role and you're doing an amazing job of it.
Speaker 3:Oh, thanks, I'm going to start crying. Yeah, it's intense, yes, and you hit the nail on the head of the emotions that it surfaces. And then the questioning. You know, because the more you push for medical answers, the more they're going to dig for medical answers, which means the more medical trauma induced on your child, the more tests. And so then you question yourself of, you know, do we really need to go under anesthesia Again? Do we really need to do this test? And then, but then you've got that gut going. Yes, we do, because it's the next step in front of us to get an answer, and no answer is not a good enough answer. Yes, so you know, and everybody who is listening has their own you know example of what this would, how this would play out for your child's care.
Speaker 3:But I think too, that background noise of am I the annoying parent? I have to keep, and I'm telling you this, or I'm saying this because I have to remind myself on a daily basis. So what? Yeah, I mean, if I'm an annoying parent and a doctor doesn't wanna work with me, they kinda have to work with me first off, but second off, I can always change if it's not working. And I've even had some doctors. You know we had ophthalmology up at Cleveland and I asked him. I love him but I said you know what ophthalmology is like the bottom of our to-do list and so to drive an hour for an eye exam just is not logical. So where can I go? That's closer to me? And he was so sweet. He was like I'm gonna recommend to you someone who is really good and patient with parents who have a lot of questions, because you have a lot of questions. And I was like good, because don't give me someone who's just gonna walk me out the door and say bye-bye, yeah that's right, that's not gonna meet my needs, Nope.
Speaker 3:so you know, it's not a bad thing when providers know that's how you're gonna be, because then they'll make sure you're put with the provider that's gonna be okay with that.
Speaker 1:Yeah, yeah, that's awesome. I'm glad you had that experience.
Speaker 3:It made me laugh that he said that because I've only seen him twice. So the fact that he knew that already made me realize, wow, I can be very, very overbearing sometimes, but it's necessary.
Speaker 1:So You're getting it done.
Speaker 3:Get it done for the babies. So I am curious when you have been working with parents and they first receive the news of a diagnosis, what would you say? I mean, I know the first thing you told me. I'm curious what would be your words of comfort, your words of advice, what would be kind of that initial conversation you would have with a family who has just received a diagnosis?
Speaker 1:I mean, I think that I would always approach it with, first off, compassion and space for grief. You know, when you get that positive pregnancy test, knowing in visions, walking a road of uncertainty and pain and fear, I don't think initially. You know, maybe there are some people who have that vision, but I think the overwhelming majority start planning and dreaming and thinking about who is this little person going to be, and getting a diagnosis is like a loss of maybe. You have spent that first 20 weeks of pregnancy planning and putting together a nursery and putting together a baby registry with all the quote, unquote, normal baby stuff, only to find out that your little one is gonna be in the hospital for the first several months of their life. And like, holy, not fair, yeah, grief, like just having dreams, like ripped away and like it being totally out of your control. So I would just hold space for that initially and then, like again, check in about like do you even understand what's going on here?
Speaker 1:Because so often there isn't a full grasp of the situation and so often in pregnancy, when you hear thus and such is not quite as we would expect it to be, that leaves like a mountain of questions you expect you go into that first test and you're gonna come out with information, not a bunch of questions, and so trying to help people process what questions are coming up for you right now, and then there's gonna be new questions tomorrow and there's gonna be new questions at three in the morning and there's gonna be your journey of processing.
Speaker 1:This kind of information is kind of never ending at this point, because you've just started on this whole new path that you didn't expect to be on right, and so then figuring out what your questions are so that you can even think about having them addressed, is really important. And to know, like, what do I understand and what don't I understand, and what questions have answers available and what questions are gonna just go unanswered, that's great, yeah. And like, how the heck do you make peace with that? Right, I don't know, I don't have all the answers and all the right things to do in that scenario, but I think that those are the things that I would start with. Yeah, I think that's brilliant. Do you have any ideas about, like, other pieces that you wish that had been part of your early journey or things that would have been brought up to you?
Speaker 3:I think, on the topic of questions, recognizing that you're gonna have a lot of questions that come up that actually are not medical, because when you have a child with medical complexities, it unearths ethical questions, it unearths faith questions, belief system questions, family impact questions. I mean I remember coming to our maternal fetal medicine doctor with all of those questions, thinking he could answer them.
Speaker 3:Yeah still, yeah, like questions of like, if she passes in the womb, do we have a funeral service?
Speaker 3:Things that are not medical, but it feels like it is because it's because of a medical reason that I have these questions, you know, like, will I get her body and what do I do with her body if she passes, and just deep questions that are far beyond medical at that point.
Speaker 3:And so there's no harm in asking the medical person. But I think what I probably would have loved to have whispered to myself back then was don't put all your eggs in the doctor's basket, because, a it's not fair of them and, b, some of those questions I mean you go to the doctor for doctor advice and then some of them, you know, need to go elsewhere, whether that's within the family discussion with your significant other, you know, if you are someone of spirituality going to someone else of spirituality, whatever that looks like, it's not always gonna be questions that are medical and, I would argue, many questions that come up, in fact, especially if you're walking the road of will they live or won't they, and quality of life and all of that. It just unearths questions you never thought you'd have to consider.
Speaker 1:Yeah, yeah, that is such a good point, and that's yeah, it was just such a good point. I'm really glad you said it. I'm really glad you said it. Yeah, I'm hooked into thinking about family.
Speaker 1:So I worked with who chose to donate their baby's organs when their babies died, and that was a whole nother realm of coordination and working with multiple organizations and different people in the health system to make that happen and, to you know, ultimately turn a tragedy well, not to turn it into anything but to also share it with a gift and a joy to another family. And yeah, it brings up a lot of existential thinking that in your day to day life does not present to you.
Speaker 3:Yes, and I think you know, going along with one of your initial comments, having grace with yourself that you're probably not gonna be able to answer them with a whole lot of confidence right up front, and knowing that you have to take your time to not feel like I need to. You know, obviously in some cases you don't have the luxury of time, but making sure that on those deeper level questions, that you don't rush to conclusions that later you're gonna think, ooh, maybe I should have thought about that a little longer, or gosh, there's just so many, so many examples of that I could give from our journey. Yeah, yeah, and I remember, you know. And another thing is thinking about what's important to you, and actually this has rocked my world. We've had, we've been visiting some different providers in different hospital systems in the last year and it's been eye-opening to me how different hospital systems kind of have almost like a different culture, right, and that makes sense.
Speaker 3:And so one of the cultures I've unearthed is this one hospital system. Every provider, it seems, asks me what are your goals for your daughter? And it totally knocked me off my feet at first because I was like, well duh for her to be healthy. But what do you think my goal is? Why am I here? But it really got me to stop and think well, what are my goals?
Speaker 3:Because in a lot of cases you can go multiple different directions in care and it depends on what you're aiming for. You know, like is it that you want your child to be as Like, so, so a good example. So we're not talking too lofty here, but, like with Charlotte, we have multiple different options. We can go with her urinary system. The only option that's not on the table is doing nothing, okay, and but they all lead to different outcomes in terms of quality of life and risk Versus benefit, and none of them are great. We actually had a surgeon the other day tell me you've got six different options and all of them have a 50% chance of them not working. So, but not working means different things in each different case. You know, like, not working might mean the year atrophies and we lose the year. Not working might mean that the kidney, you know, declines in health and we're looking at transplant. Later. Not working might mean that the bladder explodes and she dies. I mean, we're looking at a whole different spectrum.
Speaker 3:So then it makes you stop and think well, what are our goals and, with that in mind, what are the risks we're willing to take to try to reach those goals?
Speaker 3:These are things that you just never Think you're gonna have to wonder for your child. Yeah, so you know, when you're in the initial stages I don't think you have to get too Crazy thinking about this, but just a couple minutes to step back and be like okay, you know, maybe my goal is that I. I remember, you know, when I was pregnant and I don't know if I told you this Elaine during the pregnancy, but near the end my goal was I want to hold her alive. Yeah, cuz I knew full well that I might not be able to hold her much longer than that ever again, you know. So your goals change and evolve based on what you're facing. Now you know that's far behind us, thank God, my goals are very different now. It's basically trying to help her have the best quality of life for as long as that's possible, and and that's that, yeah, so that's just something to think about is knowing that Different medical approaches will lead to different outcomes, and it kind of depends on what you're you're, what you're aiming for.
Speaker 1:Absolutely, and that your provider asking you what are your goals helps them Set up your expectations. Yes, because you can have people showing up to appointments and saying my expectation is that Charlie's gonna have a normal bladder and kidney function for the rest of her life. Yeah, and Clarifying that that isn't an option yeah, right off the bat helps. It's devastating and it also allows you to then move forward with what are the possible Outcomes and what expectations can I set up for myself?
Speaker 3:Yes, oh my gosh, you just helped the last six months make so much sense in my head, because one of the first questions our urologist asked was what's your goal? And I said I want her out of pain. And Then the next four months was basically him helping me come to grips with the fact that that's probably not gonna be achieved through urology, and you know, and so then it's, and it was a full morning process and All the things. So, yeah, that's wow gosh. I love talking to you, elaine. I Can't believe we lost touch for five years, man. So okay, I think we've covered quite a few of my questions. I'm just gonna ask a very open-ended question. I guess, if you are sitting across from the table From our listeners and they've recently received a new diagnosis, what's anything else you want to leave them with? Any little nugget of encouragement or wisdom or Hope, compassion, love, whatever, whatever. What would you like to leave with them?
Speaker 1:The. You are worthy of happiness and joy and parenthood, and this happening to you isn't a fault and it sucks and there can still be joy in it, and that Probably isn't apparent right now.
Speaker 1:Mm-hmm and I don't even know if that's helpful to hear in the beginning, but I think that sometimes, when people get bad news like that, some of us and I've done this before is to share in your devastation, amplifies your devastation and, mm-hmm, sometimes having someone who has a more objective perspective and has more of a bird's-eye view, who can say, like there is still so much joy to be had in racing these little people, even though it's not gonna look like what you thought it would, mm-hmm, I don't know. I don't know if that resonates with you.
Speaker 3:I have absolutely so I don't really know, but I think I Know, I think what you said is Absolute bomb, even if it burns at the application. Does that make sense? Yeah, it's like. You know, my little son, liam, three-year-old, the other day came to me with chapped hands and I put lotion on his hands and he was crying because it burned. But then it, but then it also helped, right, and I feel like that's how the words you just said, at least for me, would have settled on me at the time. It's just like that burns so much and yet it's exactly what my soul needed to hear, to be able to just do one more day.
Speaker 3:Mm-hmm in this and and that's the other thing is just like remembering, like there is joy to be had, but it might be, you know, just like one day at a time. Just yeah, you know, we don't have to be worrying about what it's gonna be like when they're 13.
Speaker 1:Just yep One day at a time that's so far away and there's so much to be had in between.
Speaker 3:Yeah, yeah, that's so beautiful. Thank you, yeah, I got all teary-eyed. Oh Well, elaine, I'm so grateful for your time and you. So one thing we did not get to talk about, and this feels kind of a Silly order because we talked about something so heavy and now we're going late again. But I'm just curious, catch us up, so what is it that you're doing now, because I know it's amazing, and Tell us about it.
Speaker 1:Okay, thank you. So I work for Ovia Health and we are like a women's tech company and we have three apps. We have a parenting app, a pregnancy app and a fertility app, and I am one of the digital health coaches. So I get to talk to people all day long about Trying to conceive, about once they've conceived. What are all those little questions in your mind like, oh my gosh, I'm so nauseous, how do I deal with this? And I felt this twinge or pain, or something happened. What does that mean? And you know. And then in the newborn period, like I get this baby to sleep and All the things. So I get to talk to people all day long about all of those little questions along their journeys, and I am also developing content for the app and sharing information, because one of my big passions is Giving people the information that they need to advocate for themselves you know, there's this big circulating meme out there that's like don't confuse your Google search with my Decade of medical training.
Speaker 1:And I want to say to that don't confuse your decade of medical training With a lifetime of living in my own body. Thank you very much. Yes, dude, I'm living it okay. So Maybe I need a little more education about, like, the medical side of things, but you also need to take me seriously, because I'm a human who deserves respect and yes, so I'm just trying to help people get the information that they need to advocate for themselves in their own healthcare journeys, and that's what I'm really passionate about and, yeah, that's what I'm doing now.
Speaker 3:That is so beautiful. So if people would like to access these apps, do they just go to the app store and look up over a health?
Speaker 1:Yeah, they're free, and you, you only have access to our health coaching team if your Employer or health plan provides it as a benefit. Okay, so some of your listeners might be lucky enough to have that extra feature. But otherwise the apps are still very usable, like user-friendly and full of good information on your fertility, pregnancy and parenting journeys. So checking out. It's called Ovia health.
Speaker 3:That's awesome. I will be checking it out as soon as we hang Well, elaine, I have very much enjoyed our conversation. I am confident that the listeners did as well, and I think by now those who are tuning in know just why I adore this woman and Hopefully, if you're willing, we can bring you back at some points Maybe not with floodwaters and illnesses and all the things.
Speaker 1:Yes, yes, all it took to get us here today.
Speaker 3:Oh my gosh. But talk about two determined women bless you. First out, but I just knew how much you would Be a blessing to those who are listening, so worth it all day long. So thank you very much, elaine. Thanks for the opportunity, emily.
Speaker 2:You are capable, you are equipped and you are not alone. Together, we can do hard things for our children. If this episode connected with you and you want to hear more, be sure to hit the subscribe button. We would also love to learn about your personal journey and how we can support you. Reach out to us at contact at charlotte hope foundation dot org. And, last but not least, if you know of someone who could benefit from this podcast, please share. I Hope.