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Certified coach and professor Kathleen Muldoon and co-founder of Ryan House and Children’s Respite Homes of America Jonathan Cottor discuss the article “The need for pediatric respite care.” Kathleen shares the personal story of raising her son Gideon who lives with over 42 medical diagnoses and explain why the family had to move across the country to find safety. They highlight the critical difference between taking a break and surviving the relentless cycle of 24/7 medical vigilance required for medically complex children. The conversation advocates for the expansion of pediatric respite homes in the U.S. while urging clinicians to recognize that caregiver well-being is inseparable from patient health. We must acknowledge that keeping a family together often depends on the support they receive outside the hospital walls.

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Transcript

Kevin Pho: Hi. Welcome to the show. Subscribe at KevinMD.com/podcast. Today, we welcome back certified coach and professor Kathleen Muldoon and co-founder of Ryan House and Children’s Respite Homes of America, Jonathan Cottor. Today’s KevinMD article is “The need for pediatric respite care.” Kathleen and Jonathan, welcome to the show.

Kathleen Muldoon: Thank you.

Jonathan Cottor: Thanks for having us.

Kevin Pho: Perfect. All right. Let me just introduce Jonathan, and then Kathleen can share her article. Jonathan, for those who don’t know you, just give us a brief story of who you are and what you do.

Jonathan Cottor: Yeah, thanks. I always like to start out saying that I am a proud dad. Like Kathleen, my family is one of these families that is on this journey ourselves. We are an Arizona family, but our story really began when professionally I had an opportunity to move to London, England, where our second son, Ryan, was born. This was 20-plus years ago at this point. Ryan was diagnosed with a life-limiting condition called spinal muscular atrophy.

Twenty years ago, there were no treatments and no cures for that disease, and we were told not to expect him to live to his second birthday. So that was devastating news. We were 11 hours away from the closest family members all back in Arizona. We were really struggling to figure out how to live life now at this point and to kind of really support our young son and our young family. We were referred to a place called Helen House, which is the world’s first children’s hospice home that we will talk more about.

Eventually, Ryan did survive to his second birthday. He lived a very joyful, amazing life. Very challenging for sure, but he lived for 17 and a half years. He died almost seven years ago this weekend, actually. So those have been some significant tipping points in my journey and really what this conversation is about. We are now back in Arizona and excited to have this conversation.

Kevin Pho: All right. And Kathleen, you wrote this article “The need for pediatric respite care.” For those that didn’t get a chance to read that article, tell us what this one is about.

Kathleen Muldoon: Thanks. This one is kind of continuing making visible parts of my journey that I think are not visible in typical fashion to your audience—clinicians. As you know, I am a med school professor and also the parent of a medically complex child. My family has lived inside kind of both worlds where I can talk the talk and I am in the business of making hopefully humanistic and whole-person-centered doctors, but also living the 24/7 caregiving world. That includes feeding tubes and seizures and specialists. The whole alphabet of diagnoses have kind of accumulated over time for my middle son, Gideon.

What I wanted to convey, and what Jonathan and I have kind of partnered on, is that behind all of that medicine are basically families trying to stay upright. I don’t know that that part is always visible to clinicians. What I have learned is that caring for a child like mine—I have known the diagnoses, I have taught about them, what treatments are like, and how do we recognize it—but it is not just medical care. It is emotional labor, logistics, advocacy, and frankly, it is a lot of love because I love my life and I love my family. But it is intense.

Support for caregivers is almost non-existent. Given current changes in the landscape, those fractures and that invisible labor are really making the burden on families more and more apparent. For us, finding a pediatric respite center in Arizona here, co-founded by Jonathan called Ryan House (named for his son), is a life changer not just for my son’s care but for our whole family. This is a place that yes, has all the medical equipment so he is safe to go there, but it is a place where nurses know him by personality, not by diagnosis. They know our whole family and they invite us to events that allow us to share our lived experience with other families.

My reason for writing the article was really to draw attention to the fact that respite care is part of the medical plan. There are ways in which clinicians can know about what is available in their areas, what is not available, what they can do to help things become available, and just the questions that you can ask in the context of your 15 minutes of clinical care that can really make a difference for a family like mine.

Kevin Pho: So Kathleen, for those who may not be familiar with caring for a medically complex child—obviously as you said, you are a busy medical school professor as well as a parent of a medically complex child—just paint us a picture. Give us some scenarios about what your day-to-day life is like and some of the challenges that may not be immediately obvious.

Kathleen Muldoon: My son has 18 medical specialists, and that is not including the related service providers or the services that he gets at school. So when I see clinicians, I have basically a “medical one sheet.” I don’t even fill out the paperwork anymore; I just hand it over. I say, “This is the current state of affairs,” because it is so complex. What you might see is that one aspect. For example, my son has type 1 diabetes, which is in addition to everything else. You might see his A1c and do all the tests, but do you also know that I have to get up in the middle of the night and reposition him because he can’t move on his own? That is just uncomfortable.

We have alarms that go off all the time. In Arizona, when it gets cold, all parts of his body become more tense, and things don’t move as quickly in all parts of his body as maybe they should. That affects his mood and his ability to show up. He is super smart, but I have to advocate for his access to a communication device so that people can see that he can answer his questions on his own when given the chance.

I have this spider web diagram that I show the med students sometimes that shows all the different specialties, how they interact, and how I have to manage it. That is in addition to the fact that I have a full-time job. My husband has a full-time job. I have two other kids, and they are also impacted by that management, by the time that is taken up by me to do that management, by the mood in our house, and the hum of emotions.

I think even everybody can relate to this: If you are a parent or you’ve gone through any stressful time, you need breaks. People can just go down the street and get the teenage neighbor to be a babysitter. But we can’t do that. That is not safe for my son; it is not even legal, I don’t think. So having access to the fact that understanding my life is probably a little more complex… I am not going to play “Disability Olympics” here, but it is a lot going on. Having a safe place is really important so that we do get those breaks so that we can keep going.

Kevin Pho: Jonathan, you are the co-founder of Ryan House and Children’s Respite Homes of America. Tell us a little bit more about Ryan House and some of the families that you interact with there.

Jonathan Cottor: As I referred to in the opening, this is a model based in the United Kingdom. It is a community-based caregiving model, freestanding, really focused on medically fragile, very complex medically fragile children and their entire families, especially those that are on life-limited journeys. So there is that medical care that Kathleen just described, but also those psychosocial emotional supports. These are really tough emotional journeys: high stress, high divorce rates, anticipatory grief. How do you find joy in your child’s journey knowing that you are also kind of supposed to be planning for a funeral or a potential death? That is just really intense kind of work.

We were referred to it, as I said, in London, England at a place called Helen House, the world’s first. There are now 54 of these kinds of community-based models across the United Kingdom. It is a very established, mature industry in the United Kingdom. But when it was first presented to us, it was described as a “children’s hospice home.” So my wife and I were very reluctant to go because we immediately interpreted that as death, dying, giving up, lack of hope. So we just rejected it and we just said, “That is not for us.”

It was the physical therapist around us that really kept working with us and saying: “Look, we noticed that you are really stressed. You guys are really running ragged, lack of sleep. This is a place to support your family along these difficult journeys, to provide overnight respite, a safe haven for a trusted team to care for your child so that you can truly get a good night’s sleep.” So we finally agreed to go and we walked in the door expecting a nursing facility, expecting a hospital kind of facility. It was not like that at all. It was truly a home away from home. What I describe as a blanket of love.

We got to interact with other families going through similar things. Every child is unique, every family is on their own journey, but we are bonded by this pressure. So had Kathleen and Gideon been at Helen House when we were there, we still would have connected and bonded. We would have cried together. We would have shown pictures of our children together and we would have just connected at the heart along this journey. So it is any child. Regardless of diagnosis, the common bond is these children are not expected to live into adulthood. So there is that really kind of overarching theme to this whole thing.

We had the opportunity to stay at Helen House over the course of a year and a half while we were still figuring out life now and trying to figure out how to move back to the United States. On our last stay at Helen House, we asked the team: “How do we continue this kind of care in Phoenix because this has now become very important to us?” And they said: “Yeah, no, there’s none of these in Arizona. In fact, there’s none of these in the United States.” So we thought that stunk, but nothing we could do about it.

We did move back to Phoenix right before Ryan turned two. I did celebrate his second birthday. Got associated with Phoenix Children’s Hospital, which is the local children’s hospital here in town. I got a job and life resumed and we were doing the life that Kathleen just kind of described that she does with her family. Well, within about a year of being back, my wife started passionately talking about our Helen House experiences. A community started to rally around her, including myself. Everybody kept saying: “I can’t believe this doesn’t already exist. This needs to happen.”

So after a community meeting, it became a tipping point. My wife and I drove home and said: “I think everybody’s telling us we need to do this. I guess we’re doing this.” That was the moment that we then decided to incorporate what became Ryan House. We were very fortunate to have some amazing community leaders get involved with this project. My wife and I had no idea how to start a nonprofit, had no idea how to do any of this stuff. My professional career is marketing and sales. My wife is a kindergarten teacher. This is not really a medical model or a big business kind of model. It really is from the heart caregiving, family-centered care.

This community really came together and was willing to raise money. It took us millions of dollars to six years later finally put a shovel in the ground. Build what is now a 12,500 square foot, brick-and-mortar building in the center of Phoenix that is Ryan House. It is eight children bedrooms, three family suites, specialty rooms (a dedicated art room, music room, hydrotherapy pool, fully accessible playground), and a sanctuary for difficult conversations because the team there knows the kids and the family so well. They are going to have conversations about anticipatory grief or sibling support.

In our family journey, our older son is about two and a half years older than our son Ryan was. When he was in his grade school years and kids were coming up to him and saying: “Hey, I hear your brother’s going to die. How is a sibling? How is a brother supposed to handle that question?” That is just not what a third grader is supposed to be answering. Those are the kinds of things that the interdisciplinary team—that includes a child life specialist and a social worker, a chaplain for those that really find relief in religion or in faith or in spirituality—that all comes into play in these kinds of conditions.

So it just truly is an amazing thing, and it is now been open for 15 years. We have served thousands of families with overnight respite and palliative care supports along these journeys. We’ve also been that place for end-of-life care. So Ryan House has served over 550 children with end-of-life care. Ryan took his last breath at Ryan House in December of 2018.

For those on the podcast that can visually see us, I don’t blur out my background because I am clearly in Ryan’s bedroom. I love being in this space. This is where Ryan lived. He lived in this room for 17 and a half years. He did not die in this room. I find this… he is my north star. This is where I find energy. I love being in this space and just continuing to include him in my life and my work. When I go give tours of Ryan House and I walk into the room that he died in, I want to be in that room every once in a while, but I want to do it in doses because that is a very heavy room for me. I want to feel that intensity every once in a while, but I also want to dose it as I need to personally. So that is just… I don’t know, could go on a long time for that kind of stuff, but it is just a really special place. Phoenix is very fortunate to have this jewel.

Kevin Pho: Kathleen, what is the experience like for Gideon when he goes to a respite home like Ryan House? Tell us about the impact it has on both you and your family.

Kathleen Muldoon: That is a great question. That is exactly the question that I hope clinicians ask. For Gideon, we call it his “camp.” So he goes three or four times a year for like a long weekend or up to a week. He is able to be away from us, which I kind of think he likes because sometimes he is telling me to get out of his space these days. He is 12 years old now. But he has access to all this great fun stuff. There is an accessible playground outside. He is someone who is very motivated by visual and sensory things, and there is a sensory room. He can make videos to send us. There is a heated pool year-round.

So he really likes going. When we tell him we build it up over a few days: “You are going to camp.” He really gets excited. They know him so well that they know what room he likes. It is the treehouse room. So he is usually in that room, which is near to the nursing station because he does have complex needs. He knows where he is. He shows his joy viscerally.

That makes me feel better about leaving him there. Because when he goes, we arrange the time. It does take about six months for us to arrange the time for him to go because if we are going out of town with my husband for our respite, then we have to have a caregiver for our other two children come in. So that takes a lot of arranging, so it can get stressful to arrange your life to have this respite.

But when we do, when we are driving away, we know he is safe. We know that we can be up in northern Arizona for our 20th wedding anniversary, which we attribute in part to having respite care so that we have that time to reconnect. We can unwind and spend time together. Spend time doing things in parallel next to each other, not have to worry about who is going to be the person to get up for the alarms, etc., and those kinds of things.

And my other kids then also have space. If we are with them, we can do things that Gideon would not enjoy or that he can’t do. He can’t go camping; he can’t go hiking. Or they have some time alone with whoever has come into town to help us get away. They love that kind of stuff. It allows them to know that they are also whole human people that are allowed to have their feelings. That we as a family are allowed to have breaks.

And then when we come back, we are glad to be together and we want to spend time together. It is a joyous thing. It is just like any other break that you would have. So I do attribute a lot of our joy to this. In fact, my other kids are sometimes jealous: “Why can’t we go stay at Gideon’s camp?” Because there were family stays, and for a while they stopped because of lockdown and things like that. So I just feel like it is a center of joy. Even last night, we were at an event and there was a medically complex child at the event. My kids were like: “Oh, do you know that kid?” Because it is like the center of our community of connection together for caregivers. It really helps to be seen in that way.

Kevin Pho: We are talking to Kathleen Muldoon and Jonathan Cottor. Kathleen is a medical school professor and coach. Jonathan is the co-founder of Ryan House and Children’s Respite Homes of America. The KevinMD article is “The need for pediatric respite care.” Now I am going to ask each of you just to share some take-home messages with the KevinMD audience. Jonathan, why don’t you go first?

Jonathan Cottor: For those that are hearing this outside of Arizona, there really is a movement nationally. The best way to get information around that is to go to our website, ChildrensRespiteHomes.org, to learn about where this development is happening in your community. There are other pioneers and professionals that want these to be in their area.

This is a U.S. health care system that is really designed for adults. We have to rethink and reframe this for children’s health care. That is why we now have a national organization and a national movement to really look at policies around health care licensing. We are championing a pediatric palliative care center license that just got passed in Iowa as a new health care license that we are trying to expand across the country, and then reimbursement models so that these kinds of programs can start to really sprout up all across the country. So our website has a map of now 45 pioneers and programs across 28 states. There really is some energy and some momentum around this kind of caregiving model, and we just are excited to share more about it.

Kevin Pho: And Kathleen, we will end with you.

Kathleen Muldoon: My hope for medicine is that we find our way back to humanity. My take-home message for your clinician audience is really to remember that care isn’t just clinical; it is also relational. When you care for the caregiver, you are caring for the whole family. That is especially true in pediatric situations. So the questions that you can incorporate at your medical visits, no matter what specialty you are, if you are interacting with a family that has medical complexity: “Do you have respite care? How do you care for yourself? What would make it easier for you to keep doing this safely?” Those are all questions that I think encourage curiosity and could unlock the door to somebody really getting the help that they need and maybe encourage you to get involved in movements like Children’s Respite Homes of America to bring this kind of model to the families that you serve.

Kevin Pho: Kathleen, Jonathan, thank you so much for sharing your stories, time, and insight, and thanks again for coming on the show.

Jonathan Cottor: Thanks for having us on.

Kathleen Muldoon: Thank you.