Empowered by Hope
You want the best possible quality of life for your child regardless of diagnosis or prognosis. Raising a child with medical complexities is often lonely, scary and overwhelming. Join two parents of amazing children with rare medical complexities, Emily K. Whiting and Ashlyn Thompson, to get help and grow with them into empowered advocates for our kids. Here you’ll find a community of support, encouragement, education and resources, equipping you to navigate your child’s medical complexities with hope. To get more personal support, connect with us directly at www.ParentEmpowermentNetwork.org.
Empowered by Hope
Bringing Hope Home: A Mother's Journey to Secure Life-Changing Surgery for Her Child & Bring It to America for More Families
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Imagine discovering that the best medical treatment for your child's rare condition is halfway across the globe. Join us, Ashlyn and Emily, as we recount the incredible journey of Ashlyn's daughter, Emery, who was born with bladder exstrophy. Ashlyn's advocacy journey for Emery led them to a life-changing procedure at Great Ormond Street Hospital in the UK, making Emery the first American to undergo the 20+ year old surgery. This episode of Empowered by Hope underscores the importance of global medical options and the pivotal role of empowered parenting and relentless advocacy in finding the best care for our children.
We detail our efforts to bring the revolutionary Kelly Continence procedure to the US, highlighting Charlotte's Hope collaboration with top surgeons Dr. Imran Mushtaq from London, Dr. Marc LeClair from France, and Dr. PJ Lopez at Rainbow Babies and Children's Hospital in Cleveland, Ohio. Learn about the collective quest to make this life-changing surgery accessible to more families, sparing them the daunting task of traveling abroad. We share highlights from a recent webinar where parents engaged with these world-leading experts, showcasing the power of advocacy in expanding medical horizons.
Navigating the journey of advocating for your child can be overwhelming, but you're not alone. We provide practical advice on trusting your instincts, seeking multiple opinions, and staying informed about new treatments. Our episode emphasizes the strength found in unity and the importance of connecting with others for support. We invite you to subscribe, share your personal journeys, and remember that even on the toughest days, you are doing an exceptional job. Share your story with us at contact@charlotteshopefoundation.org and join our community of empowered parents.
Additional Episode Resources:
Link to Bladder Exstrophy-Kelly Continence Procedure Webinar: https://www.uhhospitals.org/health-talks/articles/2024/09/care-for-children-with-bladder-exstrophy
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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
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.
Speaker 2: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. Hello, welcome to the Empowered by Hope podcast. You have both your co-hosts here today, ashlyn and Emily. And today, oh my gosh, the news we are about to tell you is nothing short of miraculous, astounding, jaw-dropping, and, honestly, we've been living it for a year, so I think we forget how special this news is, ashlyn. So we are going to share and really Ashlyn's going to share I'm just going to prompt her with questions Some incredible news that really shows the impact of what an empowered parent can do, when you feel that you can voice your questions, your concerns, and you feel that you truly are the best advocate for your child.
Speaker 2:This is just proof in the pudding and it also speaks to we were just saying before we hit the record button. This speaks to how, when you, as the parent, speak up, regardless of the fear that you may have of whatever the power of just being able to voice your concerns, your ideas, because you know your child best and you also are going to be the one who is thinking of them as a whole child the most. So with that, I dangled the carrot long enough. Ashlyn, tell them what you're about to tell them.
Speaker 3:All right, well, thank you Emily. Yeah, this is. I feel like it is finally sinking in after a very long time of what has happened and I'm being a little cryptic here. So if you are new to the Empowered by Hope podcast, I will give you the 15-second spiel of. My daughter was born with a super rare condition called bladder atrophy condition called bladder extra fee.
Speaker 3:Three years ago we explored all the opportunities available for her in the US to give her the best quality of life and I didn't find any that I liked. And so she had her first surgery here, which was successful. But I knew there had to be more for her, and that led us to a trip to the United Kingdom last April where she underwent a surgery called the Kelly procedure at Great Ormond Street Hospital family. It was a huge, massive undertaking. I mean all the way spiritually, physically, mentally, financially, relationship-wise, work-wise, all the things. And while I'm so grateful, I mean obviously the huge win for us is that the surgery was successful. Emory is absolutely flourishing, but the reason we had to go there was because it wasn't available in the US, and that was such a huge eye opener, I think, to both of us. Emily, I felt like you were on that journey with me too of like wait a minute. You mean, america isn't always necessarily practicing the best options available for rare disease.
Speaker 2:Yeah, it was like a veil lifted of this preconceived idea that I don't even know where it got planted, but it was firmly planted in my brain that the best medical resources are right here in the US, and that's not always the case.
Speaker 3:Right, and it's not saying that we don't have great resources here. But what it opened our eyes to and we cannot go back to unknowing this is that there are really incredible resources out there in other parts of the world and we were fortunate. And if you don't mind, I'm going to jump in real quick.
Speaker 2:I think it also was mind blowing and eye opening. I think it's largely because and many of you who are listening will understand this we're talking about a very rare community of children with rare, complex diseases. So when we learned this it was like, oh, that makes sense. It's not all going to be in the US, because some of these rare diseases are going to be more researched and, you know, worked on in other countries, and that's totally logical. I just had never thought of it that way. So, anyway, I'll stop talking.
Speaker 3:No, no, no, or it's that you know, I think if you face, you know, if you battle rare disease, rare diagnoses, then we're all aware there's not as many resources put into them as more common diagnoses.
Speaker 3:There's not as many resources put into them as more common diagnoses, and that limits you know how much effort gets put into them. And what blew my mind, though, was okay, I understood that this surgery we found that had been going on for more than 20 years around. At least 400 surgeries have been performed to great success not all of them, but a much higher success rate than what was experienced with the techniques used in the US was just mind-blowing that Americans were not going over and learning how to do this technique to bring it here because they had been invited, and I spoke with what I think I told you five institutions in the US who are ranked among the top five for treating the condition that Emory has, and every one of them gave me along the lines of the same story, which was can't really tell you much about that procedure. It's just not how we do things here. We've just done this other technique this whole time and we're not trained in that, so that's why we don't do it Sure, I just was so dumbfounded by this.
Speaker 2:And I mean it was really scary. Yeah, yeah, we're all for surgeons not doing a procedure that they're not well-trained in. Absolutely yeah, exactly, I'm glad nobody was like.
Speaker 3:Well, let me take a stab at it, you know like not happening.
Speaker 3:There was none of that, but it was a really big deal to realize that we were the first American family to go over to Great Ormond Street Hospital which is really the pioneer for this, this procedure and have the surgery. I didn't have any other Americans to talk to, who you know. I didn't have our American doctors saying, yes, I'm comfortable with this. You know, we worked with our urologist team here and he helped us explore it as best we could. But it was a very humbling moment when, after yet another call with him about it and another test done on Emory, he said I'm going to be really honest. I've talked to several of my colleagues and I think you know more about the surgery than we do at this point. Sure, and that's a mom.
Speaker 3:Yeah, I had two choices. Let that scare me away from doing it, which would have been understandable.
Speaker 3:We didn't have to take the risk and it's almost deafening, like I know that this is what I'm supposed to do for my child, even though nobody else here can tell me yes, even though I was begging for the doctors to tell me, yes, go do this. My husband and I decided that, while this wasn't a guarantee, we felt like this was the best decision that we could make for Emory at this point in her life, with the information that was available to us, and if we had to be brave and be the first ones to go across the pond to do it, then that's what we were going to do. So, of course, like this was all, as you know, emily, we tried really hard to see if we could get insurance involved. Like I didn't think it was such a big ass to say, like can't you cover this? Like out of network, right, because?
Speaker 2:it's not available here Out.
Speaker 3:of network insurance. Right, it was very out of network Apparently.
Speaker 2:Outside the country is where they draw the line, which was really frustrating, which is also a big problem in the rare community.
Speaker 3:Yes, it is, because that's one of the things that I am just keeping in my pocket for right now. But anybody who has a rare diagnosis? I don't expect America to have the best of everything for everybody, because resources are limited. I get that. But if somebody with a rare disease can get optimal care somewhere else, they should have the support and the means to do that. But if somebody with a rare disease can get optimal care somewhere else, they should have the support and the means to do that without it breaking their family. So anyway, so fast forward we go. We have the surgery. Like I said, we're so blessed it was a success for her. She is going to preschool wearing her little big girl undies and probably going to kill me someday when she listens to this podcast, but I'm so glad she never listens I love you, but After going through our experience and the care over there was phenomenal.
Speaker 3:I mean the surgeon I had his mobile number or his WhatsApp number. I had direct access to him. He helped us so much, even when we ended up in their version of an emergency room, which was different than here, you know he was in another country at that point. We just had unbelievable care. So so much help, and the whole experience over there really kept being centered around Emory's mental and emotional well-being, which was not something that I was used to here. I'm used to here, where we know this is hard on your child, but we just have to get through it because it's what they need, which, to be honest, I probably accepted that quite a bit more until I went there.
Speaker 2:Well, I think you kind of have to when you are in this system, because it is the reality like you just have to accept it to get through it.
Speaker 3:Right. But what I learned over there was we could take our time or we could try a different approach, or we could hit the pause button and talk through some options we could bring it. They call Child Life over there, their play specialists.
Speaker 3:And we can bring them in and we can totally day five in the hospital. The plan we had wasn't working. Let's totally come up with a new plan that is better suited for this almost two year old from her perspective. And we did that and it was just. Obviously I'm gushing about what a great experience I had. But all that to say, so we go through all this, we get through the six weeks and don't get me wrong, you guys, it was hard.
Speaker 2:Oh, it was terrible.
Speaker 3:Recovery very challenging.
Speaker 2:I mean major surgery.
Speaker 3:Do you remember, emily, how I spent all those months researching all those Airbnbs? Because I was like, oh, we'll be able to, like we're out of the hospital for four of the weeks. We just have to be within two hours of London for safety, so we'll just go, you know, hop around the country and sightsee.
Speaker 2:I did not have the heart to tell you because I'd been like 15 major surgeries in by then with Charlotte to be like oh honey tell you because I'd been like 15 major surgeries in by then, with Charlotte to be like oh honey oh, honey yeah.
Speaker 3:But you know, I think it helped me. It helped it was a coping mechanism, is what it was. It helped me not hyper fixate on holy. Can we say holy shit on this podcast? Holy shoot, we just did, we just did, we are.
Speaker 2:I was thinking way worse, so I think you're good.
Speaker 3:Yes, you know as I say in my house now, like all my ducks, we are literally going to another country for care. And I remember when we pulled up to the hospital to go for our pre-surgery consult like our appointment and stuff I was like I literally just pulled up to a hospital for a surgery consult. I've never even been here in person and we're walking in for pre-surgery labs. What the heck am I who does this? Like it was just crazy to me, ashlyn freaking Thompson.
Speaker 3:Yes, you know how like you guys can hear me like probably being super excited, but like I've all you know, I think a lot of parents probably. You know we all say we'd go to the ends of the earth for our child and I remember when we got Emory's diagnosis once I got over the first few waves of shock.
Speaker 3:I remember, like when I started really putting on that advocate hat on and and realizing we needed to find the best experts, I remember saying I don't care if I've got to take my kid to Timbuktu Right, we will go wherever we need to get the best care, but in my head, honest to God, never thought it would be outside of America, right, so we do that. But because you know so, then I start talking to Emily. I'm like this is insane, that this is not here in America.
Speaker 2:Now keep in mind everyone who's listening this is in the middle of us strategizing Charlotte's Hope Foundation, growing the foundation. I mean, I literally remember we're having a meeting you and I, a weekend meeting on strategy for growing this foundation to reach families, to help parents be their best advocate for their child, and this is happening in the background at the same time. So we're like brainstorming. Okay, I know this is one surgery for one diagnosis, but how silly that it's not available here and that's how the whole thing started Right.
Speaker 3:Exactly yes, and so Emily was totally my soundboard. Everybody needs an Emily in their lives and an Ashlyn. This is why we talk.
Speaker 1:Thank you.
Speaker 3:This is why we talk so much about having, you know, having that support circle, which really is a fortress. It is your yeah, it's your safe place. No-transcript depended on the number of bladder spasms that Emory was having. But what ended up transpiring was I, you know, talking to our surgeon, whose name is Dr Imran Mushtaq or, as they call him over there, professor. I asked him. I said look, american families need this, this about this. How do we help them? I mean, you know, originally it was, I told him. I was like we can tell people how to, you know, fundraise through their, their support system. But I mean, it's an astronomical ask, it's a huge undertaking.
Speaker 2:We've truly debated telling to do that to be like, okay, well, how do we kind of come up with a system to help people? And then we came back to that, professor Mushtak, and we were like no, that's just not going to work. It has to be something that can be on US soil, because for most families they're not going to be able to uproot and go do that. I mean, it's just what you undertook was a massive and that's putting it mildly undertaking, and of course every parent wants to do that. But we just didn't feel comfortable to promote it and say, hey, if you can fundraise and then also leave the country for six weeks, and then also you know like no, we can't ask parents Separate. Yeah.
Speaker 3:Be away from your you know your spouse or you know, either take your kids out of school or you know the siblings out of school, or bringing them with you. Can you get coverage at work, emily, and I talk about. Part of being an advocate is not only advocating for your child's physical health, but it's taking care of the whole family, and that trip really pushed us to our limits. Yep, you know, and we came out of it, but, um, but yeah, it wasn't something that we were going to go plaster on billboards and and tell other people to do so. Emily, I almost okay, I'm going to toss it over to you, cause my mind is spinning. What? Tell them what happened next?
Speaker 2:So I think we have to drop the news alone We've done, we've done 16 minutes of lead in. We got to tell you all that now that surgery is going to be next spring available in the U?
Speaker 3:S is that is that the appropriate way to say it, yes, it's coming to America, and, and and I do want to say this part and then you, you continue on. Not only is it coming to America, as it's going to be performed in Cleveland, ohio, at Rainbow Babies and Children's Hospital, but the world like top our surgeon from London, dr Mushtak, and then an additional surgeon, dr Marc Leclerc from France, who is also extremely experienced in this surgery. They are going to be coming over to the US to help Dr PJ Lopez and his team perform the surgery. So that way, patients here are getting the top level of experts, while the American team here is building up their skill set with it. They're already the surgeon actually, dr Lopez already trained at Great Ormond Street years ago. He does know the technique, but nobody's done it as much as Dr LeClaire and Dr Mushtak. So they are literally going to be coming here a couple times a year to perform the surgery.
Speaker 2:I wish you all could see how gushing Ashlyn's face is right now. It's so precious. We keep talking about doing video podcasts. We need to do that, stat, although that would require me to put on makeup, which I absolutely do not have on right now.
Speaker 3:Yeah, I don't know if my mom hanging over sweatshirt is the right look for video podcast or not.
Speaker 2:On the other hand, we should just keep it real and show up the way we show up. Okay, but anyway, this is astounding. So this all came to a head this week, this last week. So we're recording this the second week of September or third, whatever it is, I don't know. Bottom line is of 2024, the two professors and surgeons that Ashlyn just mentioned, and, and professors, I think, pretty interchangeable with doctor, right?
Speaker 3:Yeah, actually, over there they call in Europe, professor is actually considered more esteemed than doctor, so that's why they say professor instead of doctor, whereas reversed here in the US.
Speaker 2:Yeah, yeah, I love all those. And we have nappies. I love it, okay, anyway, that's a diaper if you're wondering. So we were just with Professor Mushtak and LeClaire and Dr Lopez in Cleveland two days ago and some of you who are listening to this were part of that big day because we had a webinar with those three incredible world-leading surgeons and the two of us, and we were talking to a group of parents.
Speaker 2:There were almost 30 parents who have children with bladder atrophy who were asking questions about this procedure. It's called the Kelly procedure, kelly Continence procedure and they were able to interact with these three surgeons, get their questions answered and at least get started in trying to figure out, like, is my child a good fit for this procedure or not? And here's the beautiful thing about it, without getting into a bunch of details because we don't have time for that but bottom line is, this procedure provides the opportunity for a child to possibly be able to have continence on their own, meaning like, not catheterizing. Is that a fair, really short capturing of the surgery? Yes, okay, of course we are not saying it is the end-all, be-all for all bladder exstrophy patients Absolutely not.
Speaker 2:All we're saying is now there's another option available here in the States and you, as the parent, have the opportunity to weigh your options, including this one now, to figure out what's best for your child. And that, my friends, is this is where I'm going to land the plane here the incredible power of advocacy, and I want to make sure I make it really clear. And actually, somebody we're working with on strategy for Charlotte's Hope Foundation said this yesterday and I thought it was so brilliant. Somebody we're working with on strategy for Charlotte's Hope Foundation said this yesterday and I thought it was so brilliant. Many of you who are listening to this are in the trenches of advocating for your child and just getting through one day at a time. So you might hear this story and be like great for you. I can't even brush my teeth in the morning.
Speaker 2:I don't know if I did this morning, now that you say that.
Speaker 2:I just had to get her to preschool, say that I just had to get her to preschool, and so there's these different stages of advocacy, and 99% of the parents we are talking to in this podcast are the parents who are in the throes of surviving and advocating for your child.
Speaker 2:And that, my friends, is so noble and so beautiful, and what we're here to support you with and what we're sharing with you now is an example of how, once you get through the trenches, the muck and the mire and the heavy sloth of the day-to-day advocating for your child, the power of how much that advocating affected your child can also then turn around and impact countless others for centuries later. That you'll never even know, right, and so I don't want you to hear this and be like that's great for you, I'm not advocating to that level. That's totally fine. We're not saying you should. We're just saying that the power of advocacy for your child is massive and also the impact after that is something that none of us will ever know, and it's it's a beautiful legacy to leave behind, because we are standing up to and saying, yes, I am a capable mom and dad, a capable advocate, to be able to say I don't like these solutions. What else is there? Or I like these solutions. Let's find the best one, whatever it is, you know.
Speaker 3:Right, emily, I want to.
Speaker 3:I'm so glad that you said that and I think, a great way to probably end this episode, because obviously we could go on and on and we will be sharing more, because there's like a part two to this. But I want to bring it home to those listeners right now who are in the throes of it that are not thinking about advocacy for maybe their whole diagnosis community. That is not your responsibility at all. We're not saying that that is something that you need to do or plan to do. But I hope, listening to this, even if you're in the position of, maybe you've been feeling like you're just not happy with what your team is coming back to you about with your child, just that gut feeling is just telling you we're not where we need to be or we're not aiming high enough or we're settling. Whatever that feeling might be, let this encourage you to be okay to seek that second opinion, that third opinion Heck, I love to tell how Emily, I think, has sought as many as seven opinions. Just got my eight last week.
Speaker 2:Yes, that's right, her eight. I still don't like what any of them are saying, but that's something. I'm going to have to mourn, but you know, okay, anyway.
Speaker 3:That's okay, and your inner knowing, your inner voice, your love for your child is meant to guide you. Speak up, because what you have to say matters and you never know what one more conversation will lead to If you don't now. There is something to be said for you know, once you've sought so many opinions or whatever, like you know, sometimes acceptance is a hard pill to swallow. But if you don't have peace, yet I'm still choking on it.
Speaker 3:I'm choking If you don't have peace yet then it's okay to keep asking more questions, to keep pushing more buttons, to keep.
Speaker 3:You know, just keep seeking whatever you need to do and it doesn't have to consume you know, just keep seeking whatever you need to do and it doesn't have to consume you.
Speaker 3:One of the things that I honestly, what even led me to being able to find out about this procedure because there was nothing nobody in America was talking about it was I just made it a habit of you know, every few months I would just randomly it's like it was just kind of on a what's the word I'm looking for. It was just an internal alarm clock would just kind of go off every few months and I would just think, you know, I'm just going to research latest updates on bladder atrophy, newest treatments for bladder atrophy, successful treatments, whatever. And that's how I ended up coming across it. So maybe there wasn't something that worked for your child, you know, two years ago or six months ago, but it's okay to do a search, you know, here and there, and who knows where it will lead you, and it's okay to challenge your medical providers in a constructive way, of course, always positive and just saying what else could we do, what other options could we look into?
Speaker 2:You know, another good question, and it's intimidating to ask because you don't want people to feel like you don't value their opinion. But any good surgeon or doctor will appreciate that you are checking off the boxes to not just take whatever is handed to you To ask them if you were to go get a second opinion or if you were to go to the top doctor on this specific issue, where would you go? And that's a powerful question that has led me all over the world.
Speaker 3:Yes, it has, but I think that one combined with. Sorry to piggyback off of this, please. What would you do? What would you do if this was your child? That I have seen faces on surgeons completely, completely change. Yep, and I've even had one surgeon tell me I, honest to god, can't even go there because I, I can't even fathom yeah, I've heard that so many times you know, you know him taking a moment to realize that it was a humbling moment for both of us.
Speaker 3:But ask, being okay to ask, that that takes strength and we encourage you and in fact so whoever's listening to this. I'm just going to say this now I would love to know, send us a message, what, what questions have you asked your doctors? What have you pushed for? Or you know what's a, what is something that you've done that was outside of your comfort zone, but you had that inner knowing that you needed to ask it and needed to push for it for your child. Yep Boom, all right.
Speaker 2:All right, let's end it there.
Speaker 3:Yeah, absolutely All right. So with that summary is that you as the parent advocate, as an empowered parent advocate, can do unbelievable things and even if you're just doing the bare minimum, you're doing great. You are proud of you and we're here for you and you don't have to do it alone. So reach out to us, connect with us and, yeah, thanks for joining us today.
Speaker 2:You are capable, you are equipped and you are not alone. Together, we can do hard things for our children.
Speaker 1:If this episode connected with you and you want to hear more, be sure to hit the subscribe button.
Speaker 2:We would also love to learn about your personal journey and how we can support you, reach out to us at contact at charlotteshopefoundationorg. And, last but not least, if you know of someone who could benefit from this podcast, please share. Hope is Bear.
