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What happens when the nurses sent to care for your medically fragile child have never even touched the equipment keeping him alive? Patient advocate Ashley Youngdale knows firsthand. As the mother of a son with Mobius syndrome who required a trach and ventilator, she became his primary nurse, trainer, and care coordinator when the pediatric home health care system fell short. In this episode, based on her KevinMD article “Pediatric home health care oversight: Why accountability is failing,” Ashley reveals how the nursing shortage does more than leave shifts unfilled. It erodes the very accountability structures meant to protect vulnerable patients. You will hear why credentials do not guarantee competence, how blurred boundaries with home care nurses can put families at risk, and why parents must learn to enforce their own standards when oversight systems fail. If you care for a medically complex child or work in home health nursing, this conversation will change how you think about who is truly responsible for patient safety.

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Transcript

Kevin Pho: Hi, and welcome to the show. Subscribe at KevinMD.com/podcast. Today we welcome Ashley Youngdale. She’s a patient advocate. Today’s KevinMD article is “When Staffing Collapses, Accountability Collapses With It.” Ashley, welcome to the show.

Ashley Youngdale: Thank you, Kevin.

Kevin Pho: All right, so let’s briefly start by introducing yourself and then jump right into the story that you shared on KevinMD.

Ashley Youngdale: Sounds great. I was the mom of a medically complex child with a very rare disease. It’s called Mobius syndrome. Because of his condition, he had chronic hypoventilation and required a trach and ventilator. It meant he needed round-the-clock care from specially trained nurses. And with that requirement, we became consumers of the home care nursing industry and navigated a wide range of specialists.

Kevin Pho: All right. So tell us what the experience was like that led you to write this specific story on KevinMD. What happened?

Ashley Youngdale: Yeah. Well, when my son first came home from the hospital, we had just a ton of misconceptions about what it would look like and what the system would actually provide. We expected that nursing at home would be similar to nursing in the hospital, and over time we learned firsthand just how severe the national nursing shortage is and what that really means for patients.

Home care in particular is an especially difficult environment. It’s hard on families because of the gaps in staffing, gaps in training, and the lack of oversight. And it’s actually also hard on nurses. So many of them choose lower pay than hospital roles with less support, without the safety net that exists in the clinical settings, without the button on the wall that they could hit to call for help.

But one of the hardest lessons that we learned, and the reason that I wrote the article, was understanding how staffing shortages translate not just into gaps, but into accountability gaps. So it’s not just having open shifts, but that accountability issue that crops up along the way. When every part of the system is desperate for licensed providers, it becomes harder and harder to enforce standards, and that’s where the disconnect happens.

Kevin Pho: Give us a short primer on what Mobius syndrome is for those who aren’t familiar with it, and tell us the type of home care that your son needed.

Ashley Youngdale: Sure. Mobius syndrome is basically damaged or missing cranial nerves, specifically the sixth and seventh cranial nerves. And with that, it comes facial paralysis and the inability to move the eyes left to right. It also tends to cause full body, low muscle tone, which, when people think about that, they think running, moving, but it also affects things like anything from moving the bowels to expanding the lungs and being able to blow off enough carbon dioxide.

So because of that, my son was not able to ventilate properly and had to be trached at about, I want to say, just under two months of life. And was trached for his entire life almost, and required specially trained nurses to help with his care.

Kevin Pho: Now, what was the expectation between what would be covered by the home nurse versus the responsibilities of the family? How was that explained to you as you were transitioning from the hospital to your home?

Ashley Youngdale: Tough one, because it wasn’t explained very well. When we left the hospital, our expectation was that the nurses would be just like the ones in the hospital. I thought, erroneously, that when we got home, we’d still have this support staff and these people that knew what was going on and could teach us and continue to help advocate for him.

And what we found was a very different picture. We got home and realized that even within the nursing profession and the medical profession, trachs are not common, and dealing with a trach is not a skill that most medical professionals have. And so even the nurses that came to my home that had theoretically undergone training, they often were walking in having never changed a trach, having never suctioned a trach, having never dealt with a ventilator. And it meant that I became the trainer in addition to the care coordinator and handling the oversight of all of these different specialties.

Kevin Pho: Just give us a sense or a picture of the things that need to be done when caring for a trach in a child. For those who aren’t familiar, what would a typical day be like, if there is such a thing as a typical?

Ashley Youngdale: Yeah. When you start that question, it brings me back to a moment in the hospital when, shortly after Declan was trached, we had somebody from the hospital come by and say, “Hey, Ashley, we need to talk about care when he gets home.” And I said, “Sure, let’s talk about it. What do you mean?” And that was when I learned about the requirements and started getting an idea that the care for him wasn’t just a small hole in his throat. It wasn’t just an accessory.

Having a trach means you can’t drive the child by yourself. You have to have an adult sitting next to him in the car at all times. You can’t sleep, you can’t go to the bathroom and take a shower without having somebody else trained and ready to intervene should something happen. Because especially when they’re very young and very unstable, and that did improve over the course of his life as he stabilized a bit, but when they’re very unstable like that, you can’t step away. Because at any point that trach could become dislodged, could become clogged, and could require emergency interventions because his airway was compromised.

Kevin Pho: So tell us what happened next. You mentioned that you became the trainer, there were nurses who came to your house with varying levels of experience. What happened next?

Ashley Youngdale: It is a long story, Kevin. I actually am wrapping up a memoir that I am working on having published, because it is a very long story. But he was extremely unstable. And so when we first brought him home, the number of nurses that came in and out of the house that had no idea what they were doing was scary.

So I ended up quitting my job for the first time. That happened a lot over the years, to be his primary nurse, to be the trainer, to help get the staffing stabilized, and to make sure that there was somebody there that could intervene. And there were a number of times where, had I not personally been there, he would have died, because of the lack of skills from the nurses that were sent to our house. So it was a long road of nonstop high-adrenaline, near-death experiences that sometimes could have been avoided with better care, sometimes would have been high-adrenaline, near-death experiences with or without good care, and I was grateful to have, in some cases, some excellent nurses there to help me through those situations.

But there was no exact day in the life. He would get up in the morning and require cares to take care of his stomas, G-tube stoma, as well as a trachoma. It depended if he was sick or if he was not. He would require additional treatments, a vest, a cough assist, sometimes changed vent settings, sometimes additional nebs and medications to be administered. His bedroom was like a hospital room. It was full of equipment and full of supplies. And as he got older, as I mentioned, he got more stable. He eventually started going to school, brought his nurse with him. And so it really depended on the day.

Kevin Pho: So in your article and your story, you describe reporting incidents that felt severe and you received only silence. Did they improve? What kind of changes did they try to make to address some of your concerns?

Ashley Youngdale: No, it never got better. I completely stopped reporting. The only time Declan had a horrific incident, and an incident is too small of a word for what happened to him, when he was just over two years old, we discovered that there was a night nurse that was torturing him while we slept upstairs.

If you were to Google me, you’d find that I eventually advocated for changes in the laws in Minnesota, because torture was not illegal at the time. And so the nurse that did this to him, even though we caught it on video, which is how we were able to take it as far as we did, he served one year in prison. And there’s still, as I mentioned in the article, he still has a path back to being a nurse. Based on, if you look up the disciplinary actions on the nursing website, he had, it’s 20 years. But for a man that literally was the reason for child torture laws to be implemented in the state of Minnesota, to have a path back to nursing, to me, is just absolutely astounding. How can there ever be a path back when that is the behavior that is coming from this person?

And that was the only time that the nursing board ever even responded to me. I mentioned in the article as well, we had a couple other nurses that left pinch mark bruising that I fired, but nothing ever happened. We had a nurse that changed his vent settings. She decided on her own that his ventilator wasn’t strong enough and that that’s why he was desatting. So instead of waking me up to call the doctor, increasing his oxygen, or following any of the other protocols that were in place for this, she decided to increase his vent settings on her own, which is wildly out of scope for a nurse. And the vent setting she put him on, his trach wasn’t cuffed, which I’m not sure if you know what that means, but for anyone that’s listening that doesn’t, a trach goes into the throat and takes up a good amount of the throat, but there’s space around the trach where air can leak. And some patients have a cuff that’s basically a balloon that fills up around the trach to prevent that air leak so that the ventilation of the patient can be better controlled.

Declan’s trach was not cuffed. Had his trach been cuffed when that nurse increased his vent settings, he likely would have blown a lung. And so to me, this was also a wildly inappropriate thing for somebody to do. And when I reported that one to the nursing board, I expected reaction from them, and I got nothing. And so I stopped reporting after a while, just because it was a waste of time.

Kevin Pho: Now you are clearly an advocate for some accountability for some of these events, and you’re telling your story here on this podcast as well as elsewhere on mainstream media. Just tell us, what have some of the responses been? You mentioned that the nursing board was mainly silent, but tell us about some of the other responses that the public had to your story.

Ashley Youngdale: I think most people don’t know what to say. Some of the things that Declan went through, he brought out the best and the worst in humanity. He was, he passed away last year. He was one of the kindest, sweetest, and most gentle children on the planet, which I know I’m biased, but he was wildly popular and beloved by the community. And for most of his life, I stopped telling about what happened to him, because it was his story, and I didn’t want that to be how he was known.

Since his passing, it no longer is about protecting his privacy. In my mind, it’s about using his story to advocate for change and for improvement for others. His story had such a huge impact on so many lives. Every time I see a news article that pops up in my feed that uses the laws that were passed on his behalf, I absolutely hate that those laws have to be used, but I’m so grateful that they’re there. So I apologize if I’m derailing from your question.

Kevin Pho: Not at all. Well, first off, let me say that I am so sorry for your loss, and thank you so much for sharing Declan and your story. Tell us the type of changes that you would like to see happen after reflecting on the past few years.

Ashley Youngdale: I am sure that most of your listeners would say the same. I feel like we need a real revamp of the medical industry as a whole. I feel like the industry does a disservice to patients and to the clinicians that are trying their best to give good care to patients. I think that we as a society need to do a better job of figuring out where our priorities lie and making those decisions with less fear about making everyone happy, and more intention about where the needs are and what the actual choices are that are being made.

So for example, if we as a society choose to intervene and believe that a life such as Declan’s has enough promise that’s worth saving, then we need to put together the systems and supports to take care of him. Currently, to me at least, from a patient perspective, it feels like we put all this pressure to make these choices on clinicians, on the hospitals, and nobody wants to make the difficult decisions and talk about the ethics. And then we aren’t there for the fallout.

So I feel like it comes to a T with the nursing piece and home care, and we don’t have these accountability pieces, and things fall through the gaps and through the cracks with the lack of support that’s provided to the families and to the clinicians. And I think that it’s because of those systemic issues. There’s plenty of people in home care in the medical profession that want to do the right thing, but because we’re not making cohesive decisions about what our priorities are, we end up with these issues.

Kevin Pho: So specific from a policy standpoint, what are some policy actions that you think would best fix this issue?

Ashley Youngdale: I don’t have all the answers, so I don’t want to proclaim that I think I could single-handedly fix it. I think though that we have to start requiring that there are actual staffing solutions in place, that if we’re going to send kids home on home care, that we need to have the pay in place to recruit and keep nurses, without asking them to do jobs that are underpaid and forcing them to choose between a job that doesn’t pay them well enough to support themselves or another job that maybe isn’t the one even that they would want to do, but they have to choose in order to take care of their own families.

And I think that, separate from the money piece, we absolutely need to require that there are consequences for actions and behaviors that step outside of set boundaries. When a nurse tells me, “I could lose my license for doing that,” it should mean something. And it should actually mean something when a nurse or a doctor or anyone else steps outside of their scope of practice or intentionally harms a patient. There should be consequences.

Kevin Pho: Now, for the other families who may be listening to you and may need home care for a serious rare disease, what kind of advice can you share with these families?

Ashley Youngdale: I feel like that’s a question of what I wish I had known and how to better approach it. And to me, there’s a couple of key pieces.

With home care nurses, one of the hardest lessons for me was that nurses aren’t your friends. You have these nurses coming into your home, into your very personal space, helping you with your child, and the boundaries can get really blurred really fast. And it was a really difficult lesson for me to learn that the home care nurses aren’t your friends. Because they’re there, you can care about them, you can and should be respectful of them, you can even have a good working relationship. But when they’re being, when they’re there for a paycheck, that paycheck can disappear. You have hiring and firing responsibilities over them. At any point, they can and will disappear, because people don’t stay in jobs forever, and they’re in your house and life, you are not in theirs. And that relationship is not sustainable when they leave. So you can have a good bond, but that was a very difficult lesson for me.

A second thing is that credentials don’t guarantee competence or character. I think we all grow up with this mindset, or many of us are taught, I think about the slogan “nurse brings the care to health care.” And many of them, that’s true. We met a lot of wonderful nurses that I still keep in touch with a little bit here and there. But just because they have a nursing license doesn’t mean that they’re going to take care of your child in a kind way. And it doesn’t mean that they’re competent either. So remembering that and making sure that families keep a lookout for that, especially in their home, is important.

And finally, the third big lesson for me is to remember that, your house, your rules. That became one of my slogans over the years: my kid, my house, my rules. And I tell parents that all the time too, because the staffing gaps are real and the issues with accountability are real. And no nurse is better than a bad nurse any day of the week. As difficult as it is, and as desperate as these families are for help so that they can sleep, shower, work, it’s better to have no nurse than to have a nurse that you think is doing a job that they’re not, and that is actually potentially causing more harm than good.

Kevin Pho: We’re talking to Ashley Youngdale. She’s a patient advocate. Today’s KevinMD article is “When Staffing Collapses, Accountability Collapses With It.” Ashley, let’s end with your take-home message that you want to leave with the KevinMD audience.

Ashley Youngdale: I think the take-home for me is that the idea of oversight is powerful, but the enforcement of it often isn’t. That too often families rely on that system until they learn the hard way that they are the ones that are really responsible for their own protection.

Kevin Pho: Ashley, thank you so much for sharing your story, time, and insight. Thanks again for coming on the show.

Ashley Youngdale: Thank you, Kevin.