I’m Aware That I’m Rare: Victoria McKinnon (469)

phaware global association®
12 min readMay 20, 2024

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the phaware® interview

In this episode, Victoria McKinnon shares her personal experience with pulmonary hypertension, specifically her son Owen’s eight week battle with the condition. Owen was diagnosed with alveolar capillary dysplasia (ACD), a genetic disease that causes pulmonary hypertension. Despite initial improvements, they ran out of treatment options and ultimately had to make the difficult decision to remove care. Victoria emphasizes the importance of communication and honesty from healthcare professionals, as well as the support and knowledge gained from joining online support groups. She also discussing her fundraising efforts to support research and find solutions for children with PH. Learn more about Victoria’s fundraising efforts: www.withlovefromowen.com

My name is Victoria McKinnon. I’m from Boulder, Colorado right now. My connection to pulmonary hypertension is my son died from pulmonary hypertension two and a half years ago after eight weeks of life-fighting pulmonary hypertension.

Owen arrived within an hour of his due date. There was no indication that anything was going to be wrong. There was nothing wrong during the pregnancy. He actually arrived seemingly healthy. He weighed a lot. He was long. He was healthy. He came out with a big scream. It was only over the course of the first 24 hours, that we realized something was wrong. He went into respiratory distress and was intubated. We got transferred to the local children’s hospital in Colorado. They assumed that it was pneumonia. We progressed. We were treating it. After a week, it wasn’t getting better. He all of a sudden crashed. I’ll never forget him crashing on ECMO. It was when a nurse ripped off a medical tape. We now know with pulmonary hypertension, these sort of events can precipitate a pulmonary crisis. It was extremely traumatic.

At that point, after he went on ECMO, they suspected ACD, alveolar capillary dysplasia, a genetic disease that causes pulmonary hypertension due to the misalignment of the pulmonary veins. We waited for a diagnosis from the genetics, but unfortunately, we didn’t get an answer. They came back positive the genetics were totally fine. Before removing care, we decided to go ahead and do another echocardiogram. The echo actually showed positive improvement. So that kind of bought us time. We thought, “Man, this is a miracle.” We had our voodoo candles out. We were so excited. Then we spent weeks three through seven trying to decide what medicine to do next. We were on Riociguat, Sildenafil, all the big hitters in pulmonary hypertension for neonates. Unfortunately, we ended up running out of options.

Even though he came off ECMO, he was extubated and he was able to be on a high-flow nasal cannula. Ultimately, there wasn’t any more we could do. He was definitively dependent on NO (nitrogen) and was not stable enough for a lung transplant. So without a diagnosis and without knowing what to do and what this even is, we ended up getting really good advice from our pulmonary hypertension doctor. I will forever be grateful for this, because I do think that he kind of stuck his neck out on the line and gave us his true human empathetic answer.

For us, it was removing care. I didn’t want to incite any more pain on Owen that he was already in. So we did remove care and it was only after his death that we learned that Owen and myself actually lack the FOXF1 promoter that causes ACD that was found in the regulatory region postmortem that was not tested. They only tested the exome when he was two weeks old, so that’s how it was missed.

We went from, “Oh my goodness, which onesie am I going to have his newborn photos taken in?” I had a bunch screen printed with his name on it. I had a newborn photographer all lined up. I was so stressed, should I get my hair done? Should I not? The silliest things in your life. It all just came crashing down where we are just like, okay, is he going to keep breathing another minute? It was a really challenging eight weeks, but you’re just single-threaded on survival for him. But it was really challenging.

There were a few things that brought us enormous comfort. At along every step, we joined a Facebook group or a community. So when we were just in the NICU and it was pneumonia, I joined the NICU moms group. Then, when it was like, oh, there’s pulmonary hypertension, then it’s ACD, and then it’s interstitial lung disease, I actually joined a Facebook group in all of those and learned what would life look like with this diagnosis? When we joined the lung transplant group, what would it look like? What are our options? All of that sort of stuff. Ultimately, the only group where we were a member of now was the ACD group, but I think having something like phaware would’ve been really helpful. Granted, in those eight weeks, it’s hard to find all of these things, but these sorts of networks bring so much comfort and also knowledge.

My husband Daniel has a PhD in material science. I think that that carried over to him reading every single PubMed article related to this. We were reading about clinical trials. Dan on the NICU glass wall that slides and opens up to get in the room, had taped 40 different papers all highlighted, did a tree, had written the PubMed numbers on it, trying to ask questions. He would interrogate them at rounds for an hour. All of the nurses would walk away. They’re like, “This is a waste of my time.” But we just went into what can we do to help? Maybe they’re missing something. Maybe there’s something else. So to go from, should I do my hair curly to is there a clinical trial and a rat that might save my son was just really horrible.

Right now, we’re at this pulmonary hypertension conference for pediatrics and neonates. I was asked to give a 10-minute talk. While I could talk for hours about Owen, I wanted to just monopolize on an opportunity to give them something to work with. So yes, this is a really sad story. Yes, there’s horrible things in the world, but how can you make our horrible days less bad? So that’s kind of how it came about.

As a call to action for nurses, respiratory therapists, all of the doctors and physicians that are helping us, I have five asks from parents. I’ve consulted other parents in compiling these asks. Through that task, I did realize the breadth of requests from parents. I will caveat this list of five asks with, I think the best practice is to just ask how a parent wants to be communicated to, but these are my takeaways and what I would ask from my personal experience.

The first ask is the hardest. We found that during the ambiguous end-of-life decisions, we were given a lot of information, but we didn’t have the context surrounding it. This was my first baby and only baby, and we haven’t seen what is a survivable sick kid and what is not. During those decisions, only Dr. Kinsella offered his compassionate perspective on what he would do if it was a family member. I’m asking as a human, as a mom to another doctor what they would do. I am asking specifically, because I trust them and I am curious.

I know that this may not be shared with all of the parents to want to hear a personal opinion, but when directly asked, please go ahead and share because as a mother, I couldn’t possibly have made the most impossible decision you could think of without the recommendation of someone who has seen infinitely more sick kids than I have. So his opinion was the ultimate gift of freedom for me from rumination or any guilt. So that’s the first ask.

The second ask is honesty. I’m going to tell a little story, and it sounds very silly, but I actually think he was really incredible. So we call him the “Pizza Tie” doctor. He’s a very cheery pulmonologist. We had never met him and he shared his point of view with the most hysterical fashion. We asked if he thought Owen had ACD and he said no. We asked if he thought Owen had another interstitial lung disease and he said yes. We thought that this was good news. He said no. We asked if he thought Owen would live, and he said no. He said all of this with a smile like recommending a soup. While this sounds very unusual, I think “Pizza Tie” doctor provided us with that direct clarity that we really needed to prepare for the worst. So I think the direct answers in a way were the most compassionate and most informative. He didn’t know the answers, but he gave us his opinion. I think that that was great. So second one is honesty.

The third one is very unanimous along parents. If you’re listening to this, you’ve probably received it, you’re probably in the weeds. But we want to learn the diagnostic algorithm. What this means is what is the decision tree of options. What are the options of diagnoses? What are the pieces of information we need to go through to eliminate those options? We loved knowing this. I’m sure that as a physician or a nurse or a caretaker, your options are more vast and maybe you want to give us a pared-down list so we don’t have unnecessary worrying. But I think, for us, the information and the education was incredibly empowering.

The fourth one is parents network and Facebook. As you guys all know, there’s NICU groups, there’s interstitial lung disease groups, there’s ACD groups, there’s lung disease Facebook groups. There’s so much activity in these Facebook groups. During our research in the hospital, we not only use these Facebook groups to learn about the disease, we learned what is the quality of life going to be with these diseases. Then, we also connected with other parents. I think that that has been the most impactful.

There’s a child in Florida that’s a few years old and I am friends with the mother. While we were in the hospital, she was a few months ahead of us and she gave us so much advice about NICU, questions asked, things like that. Thank heaven her son is still alive and breathing. It’s such a miracle and I am still so grateful for her. Another parent, an ACD parent, ended up moving down the street. Another ACD parent ended up being the DJ at our Children’s Hospital fundraiser.

Lastly, the last ask for number five is when you are escalating intervention. Let’s say you’re on high-flow nose cannula or you’re intubated, preparing us for what would it look like for the next intervention if the worst were to happen would really help remove some of the trauma. For me, one of the darkest memories through Owen’s life was the day he crashed and went on to ECMO. I will never forget when the nurse ripped off the band-aid, he wasn’t breathing, he started to turn blue. I couldn’t do anything. And all of a sudden, the room filled with 30 people. It was so traumatic. Whenever I’m in a doctor’s office or in a hospital room, unfortunately, I’ve had this experience again with my dad and nurses flood in. I completely lose it and panic. I’ve had to do a lot of EMDR therapy for it. But I think what would really help, and my ask for physicians and doctors is to help prepare us.

If you are at intervention intubation, tell us what would happen, what are the conditions that would be required for us to go to ECMO. Or if we’re on an high-flow nose cannula, what oxygen do we go to intubation or things like that. I think talking it through, maybe even getting the paperwork ready so it’s not a last-minute decision with ECMO would really change it for the parent, because it is something that I’ve continued to have to work through to be able to go to a doctor’s office or if there’s a lot of people running somewhere quickly. I know that you can’t stop these emergent situations, but preparing us is that.

Owen had three moments of joy. Well, hopefully, more than that, but there are three call out moments of joy and they would not be possible without the physicians and the nurses and the research that has made this all possible. Without that ECMO bridge to more time, we wouldn’t have got this. So I’m just so thankful for the medical staff and doctors. So thank you to any of those listening.

The first moment of joy was actually planned by one of his nurses, and it was night staff and our on-call attending, Dr. Paul Roseanne even made an appearance at 1:00 AM for his two-week birthday party within the hour. A nurse brought hats, balloons, and one respiratory therapist was a trained clown and made blow-up balloon animals, which escalated to sword fights in the hallway. Night shift is way more fun. We spent every night at the hospital sleeping with Owen in the room. So we were able to take part in all of that fun. ECMO, albeit a bridge to nowhere, let us reclaim a traumatic departure and have these happy moments like this birthday party. The nursing staff was just absolutely incredible and thought of everything, and we’re so grateful for that one.

The second moment of joy wasn’t really a moment, but a series of moments. Dr. Kinsella, our attending ordered physical therapy while balancing that we’re in palliative care decision-making. I think that the physical therapy brought increased connection, engagement, and positive interactions to Owen and to us. He had a little maraca, he would shake, at least I would claim that he would shake. Maybe he was accidentally shaking it. It’s unclear. He was only a few weeks old, but I would say he was very advanced for his age. He also had this little light up crab and that was all gifted from physical therapy. I think when you’re a little baby and all the physical touch you’re having is pain, being able to introduce some positive movement let us take control back from the situation.

The last event, and I don’t know if everyone is going to be able to do this at their hospital, but we might have broken some rules. It’s unclear, but we were able to get Owen onto the helipad to see the son before we removed care and he passed away. Owen was so captivated by the surroundings and the sun. I remember him just turning his head looking back and forth up at the sky. He was a little cold and he did not like the wind, but the sun and the sky, he was just enamored with it. It just rejuvenated us all. The photos of us on the roof being happy, we were singing to him, it was just the most cherished memories of my entire life. I think that that is something that doctors can help enable in the future, is allowing these sort of special moments to come through, whether it’s outside or whatever.

After Owen passed, we were a little lost. We knew we wanted to have kids. Man, having Owen and just experiencing that unconditional love, it got us hooked. We really wanted to have a family. We love Owen and we want to have more kids. That has not been in the cards for us yet. We were in Boulder, Colorado. We had bought this house for Owen. Within three weeks of knowing that I was pregnant, we were like, “We need to get a house.” We bought a house for him. We just couldn’t live in this five-bedroom house alone anymore, so we’re renting it out. We’re moving back to San Francisco.

But what we’re doing while we’re waiting as a positive is we’re doing a lot of fundraising, hearing what doctors are doing and the research. If we can help fund more private investigators to write more papers or to travel to these conferences and learn more, I want to make that happen. So, we are fundraising, we’re just going through our local Children’s Hospital and that they’re distributing it to things like this conference to get more speakers at this conference and things like that. We host an epic rager where it’s in Owen’s honor, but we really want it to be a fundraiser and a positive thing. We had a band, we had it catered, we had glow sticks. We’re really trying to bring joy and happiness into making a change and to finding answers to finding solutions and helping the kids that haven’t been born or the kids that are still here with us make their lives better.

So that is my passion. That’s what I’m working for. We thought about trying to switch and become doctors or something, but we’ve decided we’re just going to keep working and just donate money. So that’s what my passion is. That’s what we’re doing. It’s really an honor to be here and to get to hear the research that they’re doing. I hope to further that.

My name is Victoria McKinnon, and I’m aware that my son was rare.

Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us on social @phaware Engage for a cure: www.phaware.global/donate #phaware Share your story: info@phaware.com

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phaware global association®

Are You #phaware? Pulmonary hypertension (PH) is a rare, life-threatening disease affecting the arteries of the lungs. www.phaware.global