Episode #142 - One Family’s SUDEP story: A Tragic Loss Drives SUDEP Advocacy and Fundraising featuring Lisa Maffie, Bob Maffie, and Austin Maffie
Episode Overview
Episode Transcript
Kelly Cervantes:
Hi, I’m Kelly Cervantes, and this is Seizing Life, a monthly podcast produced by CURE Epilepsy. Today on Seizing Life, I’m happy to welcome the Maffie family, Lisa, Bob, and Austin, to the podcast. Lisa and Bob’s oldest son, Anthony, was diagnosed with epilepsy at age 16. During the next seven years, Anthony’s seizures were mostly well-controlled as he continued to compete in athletics, graduate from high school, and pursue a degree in nursing. Despite the infrequency of his seizures, Anthony tragically passed away from SUDEP in 2019.
In recent years, the Maffie family have become advocates for SUDEP awareness and research, organizing several fundraisers in honor of Anthony. They are here today to share Anthony’s story, provide their insights on SUDEP, and offer advice for those patients who may be at risk, and family members who may be concerned about the prospect of losing a loved one to SUDEP. Lisa, Bob, Austin, thank you so much for joining us today, I am looking forward to this important and meaningful conversation. But to start things off, I know personally, there are few topics I love more in this world than talking about my baby girl, Adelaide, who passed in 2019, and I would love to hear from you and hear about Anthony and who he was as a person and a son and a brother.
Lisa Maffie:
I can start, Kelly, and I’m sorry about Adelaide, she passed in the same year that Anthony did. He was so full of life, he loved his family and his friends, he loved hanging out with us. He loved to play rugby, he loved karate. He loved that he was going to be a nurse, he decided on that in his junior year at high school, so he loved his job as a CNA. He was a funny kid, never really took himself too seriously. Just a lot of love there, a lot of authenticity.
Austin Maffie:
Yeah, no, to go off that, I would say, I mean, we did everything together, as an older brother, looking up to him. Fishing together, it didn’t matter what day of the week, he just got out of work, or the weekend, didn’t matter, we always tried to fish in every spot we could. He would invite me out with his friends, too, which was awesome, even when he was at Curry. But really, just someone that lit up the room and truly was just an awesome person to be around.
Kelly Cervantes:
Bob, what are some of your favorite memories?
Bob Maffie:
That he was very competitive.
Kelly Cervantes:
Us oldest children tend to be that way.
Bob Maffie:
I was always his partner, we would play badminton or bags, he wouldn’t have done well as his mother’s partner, because he was so tough on himself and others. But he was just always a great athlete, a good listener, great kid.
Kelly Cervantes:
Thank you for sharing Anthony with us. Can you tell us about when he experienced his first seizure?
Lisa Maffie:
Yeah, so it was just before his 16th birthday, he was actually on the school bus, and had his first seizure. And school bus pulled over, the kids were amazing, they called 911. One of his friends called me, I actually beat the ambulance to the school bus, but they had already had him on the floor, turned on his side in a recovery position. And then, the ambulance took him to the hospital, and it was just out of the blue, like, how did this happen? What’s going on? And they wanted to start meds then, because of what the EG showed, but we were trying to absorb this diagnosis that he had a seizure, and maybe the EEG looked like epilepsy. So we did get a very quick appointment at Children’s Hospital within like, 48 hours. According to the pediatric NP that we saw, she felt like his EEG did show epilepsy, and that we should consider medications. I think that was a lot for all of us, especially Anthony, to absorb.
Kelly Cervantes:
Yeah, so he has the seizure, which is terrifying, you have an appointment with a neurologist just a few days later. What did they tell you about epilepsy during that appointment? You said that they started you on medication, but how was it explained to you and to Anthony?
Lisa Maffie:
Maybe it was the fogginess of the time, Kelly, but I don’t remember a whole lot of information coming at us about epilepsy. I remember the diagnosis to go home and consider medications, which we did as a family, but I don’t remember a whole lot of education. I don’t think I got a packet, or … Of course, I went home and Googled epilepsy. And as a adult NP, I was more trying to figure out, what does this mean for our life?
Kelly Cervantes:
Absolutely, and what did Anthony’s seizures look like? I know that he didn’t have a lot in his life, but the few that he did have, what did they look like?
Lisa Maffie:
Austin, I’m going to let you tell me, because you unfortunately saw the seizures so much more than we did.
Austin Maffie:
Sure, I believe I saw two of them in person. The first one, I remember, he was downstairs playing Xbox, I think it was a Saturday or Sunday morning, early. He was on the floor with the controller and the headset right next to him. The game was still playing, but it almost like he was asleep on the floor. He had some bruising, and I went to go wake him up, and he was a little slow to get up, but I immediately put him over to the couch. And maybe I was 12 or 13, so I wasn’t 100% sure, really, what it was, I don’t think I really ever was in a lot of the conversations about Anthony having epilepsy.
But I kind of realized that this might be … He had a seizure, so I actually picked up the headset and talked, and see if there was anyone online with him, and his friends were there, and I was like, how long has he not been here for? And they were like, about 30, 45 minutes. So that was about the time he was there, and I remember, I called my mom downstairs and asked him about it, and I think that’s when they realized, that was what, his second seizure, I believe?
Lisa Maffie:
Yeah, he was 16, so that was his second one.
Austin Maffie:
So that one, I didn’t physically see. I don’t know if it was the fifth or the sixth one, I did see. We were downstairs, actually, same spot, I think we were watching a car video, something stupid on YouTube, but all of a sudden, he turned to his right and really raised his right arm, and I was like, Anthony, hello? And he turned his neck and everything, and then, everything snapped back and he started seizing right in front of me.
Kelly Cervantes:
So were all of his seizures tonic clonics?
Austin Maffie:
Yes.
Kelly Cervantes:
And were you ever able to identify any triggers for his seizures?
Austin Maffie:
I know we talked about this before, I really don’t think we found like, oh, this was that, but I feel like the majority of them were either at night or early morning, they weren’t ever really midday. The one that I saw downstairs, I think that was the only midday one.
Kelly Cervantes:
And how would you characterize Anthony’s attitude toward his epilepsy?
Austin Maffie:
For the most part, I think he kept it … He didn’t wear it on his chest, and it wasn’t a conversation starter, I think he was very aware of it. I know, we’ll talk about this later, but driving was a big aspect of it, where he was just getting his permit and his license, and that was a big hiccup in getting that, it took an extra year or two years to get it. But I don’t think he looked at it as something negatively, and I think he carried on with his life as if he almost didn’t have it.
Lisa Maffie:
Yeah, I think I’ll add to that, in that, because he really didn’t have side effects from the medication, it wasn’t really difficult for him to take the medications. I definitely think there were times that he probably forgot to take them, especially when he had his seventh seizure, but for the most part, because when he took it, he didn’t feel a whole lot different, I think that he was like, mom, you know what? I haven’t had a seizure in whatever, two years, he went long periods without him, I’m just going to stay on my meds, because if I want to wean off them, I have to stop driving, and driving was a big thing for him, yeah.
Kelly Cervantes:
Yeah, that’s a huge source of independence …
Lisa Maffie:
Huge.
Kelly Cervantes:
… for anybody, but especially a teenager. Was he public with his diagnosis? Did he tell friends about it? I know you said it wasn’t a conversation starter, but was it ever something that he hid, or was he pretty open about it?
Lisa Maffie:
Yeah, I think his friends all knew, when he used to swim in high school in his senior year, his swim coach knew, all of the teachers in school and his coaches knew. When he played rugby at Curry College, his coach knew, and then, when he went to work, he let people know in work. So like Austin said, I don’t think he led with it, but he knew enough to make sure that people knew that this was what happened, and he kind of coached them, if this happens, this is what I look like when it happens.
Kelly Cervantes:
Yeah, and did it affect him academically at all? I know you said that he didn’t have any side effects from the medications, which is incredible, but did he notice any differences in school?
Lisa Maffie:
I don’t think so. I won’t say he was a super strong student in high school, but when he got into nursing school and learned how difficult the curriculum was, he ended up taking a year off from, it was his sophomore year, and that was when I think he had three seizures over that time. And sophomore year is very difficult in undergrad nursing school, and he just couldn’t keep up, he took a year off. This is very sad, but he died on January 4, 2019 and shortly thereafter, he made Dean’s list at Curry College. And he was striving to make Dean’s list his junior and senior year, so I think he found his rhythm, and I don’t think it really did affect him cognitively.
Brandon:
Hello, this is Brandon from CURE Epilepsy. Sudden unexpected death in epilepsy or SUDEP occurs when a person with epilepsy dies for no known reason. It’s estimated that SUDEP takes the lives of over 3000 people living with epilepsy each year. CURE Epilepsy is committed to unraveling the mysteries of SUDEP. Our work has helped establish respiratory rest as a leading cause of SUDEP, among many other important findings. Learn more at cureepilepsy.org. Now back to Seizing Life.
Kelly Cervantes:
Now, I wonder, when did you first hear about SUDEP? When did you become aware of it?
Lisa Maffie:
So when we got the diagnosis at Children’s of epilepsy, and I didn’t feel like I got a lot of information on it, the first thing I Googled was, can you die from epilepsy? And SUDEP came up. And so, we had a follow-up appointment with a pediatric neurologist shortly after that first appointment, a couple days after that first seizure. And I asked her about it, and she said, that is so rare, and he is not at risk, and that was sort of the end of the conversation. And I didn’t really investigate anymore, Kelly, I wanted to leave it to the specialists. And so, even when we changed him from his pediatric epileptologist, to his adult, I brought it up again with him, and he pretty much dismissed me and said, it’s rare, and it was never really systematically talked about it any clinic visit. And I counted them up. Anthony had about 8 to 10 clinic visits with pediatric or adult neurologist, that’s a lot of visits to not talk about something that is one in a thousand, in Anthony’s case, with tonic clonic seizures,
Kelly Cervantes:
Yeah, that he was a young man, that he did experience tonic clonics, that some of them did occur at night. It’s frustrating to hear that your questions or your concerns were sidelined instead of giving proactive advice. And feel free to share as much or as little in response to this next question as any of you would like, but in January of 2019, Anthony suffered his seventh seizure that took his life. What happened that day?
Lisa Maffie:
Bobby and I went to work like it was any other day. Actually, I should back up, it was coming off New Year’s Eve, Anthony was away with friends on New Year’s Eve. He had come home, and he worked Wednesday and Thursday evening shifts, 3:00 to 11:00, at a local hospital, he was a CNA. That next day, he was going into the Boston Garden to see a Celtics game. Bobby and I always got Anthony and Austin tickets for that every Christmas. And when he didn’t wake up at 11:00 or noon, which, it wasn’t uncommon for him to sleep late when he came from evening shift, Austin went in to wake him up, and he knew immediately that he was gone.
And Austin called 911, called me. As I said in the morning, it was a normal day, me and Bobby just got ready for work and went to work, and we both got a call … Well, I got a call from Austin, and then, I called Bobby, and we miraculously somehow got home. Police were everywhere, the ambulance was still outside the house. My sisters were called from people in my work, that I just sort of ran out of there saying, Anthony isn’t breathing. My sisters were praying the ambulance wasn’t at the house, because they were like, please let them have taken him so that they can help him. But he was gone for a long time.
Kelly Cervantes:
I’m so sorry.
Lisa Maffie:
Thank you.
Kelly Cervantes:
I’ve spoken to several families who have lost children to SUDEP, and it is not always a clear cut cause of death, some families have to fight with medical examiners to get that answer, but fortunately, you have a medical background, and so, how were you able to get your answers so much sooner?
Lisa Maffie:
I knew immediately, I went into the room, and he was prone, he had seized, there was blood. I knew immediately, it was SUDEP. I knew immediately, when Austin called me, it was SUDEP, because even though I didn’t want to think about it, it was always in the back of my head, people do die from epilepsy, other than traumatic experiences or drowning or that. So basically, when the police were there, and when the funeral came, and I believe the medical examiner came, I said, it’s sudden unexpected death in epilepsy. This is what he died from, it’s SUDEP.
And I’m assuming that they confirmed that with either his … He still had a pediatrician, and his neurologist at the time, because we did not consent to an autopsy. I wish we had, we got involved with the National American SUDEP Registry after the fact, and I do wish we were able to give blood samples, but at the time, a friend of ours was the funeral director, and said, I don’t think you want to go through an autopsy. But SUDEP got on the death certificate because I saw it the day that we waked him, yeah.
Kelly Cervantes:
And even that much, having it on the death certificate, is so valuable for research. Such a small thing, but [inaudible 00:16:52].
Lisa Maffie:
It’s huge, it informs public policy. I mean, in medical examiners, there’s only, I think, four states that have laws on the books that say, if a medical examiner comes upon a young person with epilepsy who’s died, they must rule out SUDEP.
Kelly Cervantes:
Yeah. Only four states, I didn’t know that.
Lisa Maffie:
Last I checked, and that was a few months ago.
Kelly Cervantes:
That’s hard to hear, and something that I know there are amazing advocates out there that are working to overturn, so all the power to them. So doctors are not required to inform their patients with epilepsy and their families about SUDEP, what do you wish you had been told, and when do you wish it had been told to you?
Lisa Maffie:
So I did go back for my doctorate like a year after Anthony died, with a focus on SUDEP. And when I got Anthony’s medical records from the hospitals he was treated at, he had had shoulder repair surgery at one of the hospitals, and he had to sign a consent for general anesthesia. And the risk of dying from general anesthesia in the United States is one in a hundred thousand, and yet, there his name was, signing that he knew there was a risk for that, as low as it was. And yet, he fit the category of being at the highest risk for SUDEP, with nocturnal, generalized tonic-clonic seizures, young male, 22 years old when he passed, and nobody told him about it. And so, I feel like that needs to change on a global public scale.
And in 2017, guidelines were published for neurologists from the American Academy of Neurology and American Epilepsy Society, and it received a category B, which uses the word should, clinicians should discuss SUDEP risk with their patients with epilepsy. There were a lot of caveats in the recommendations, some of the criticisms of them was that it came off almost too lightly. But having it been five and a half years since Anthony passed and what I know now about SUDEP, I wish we knew, at least that first visit with the pediatric neurologist, which was probably a month or two after his initial seizure.
She told us all about swimming with a safety vest on, swimming with a buddy, watching the water temperature in the home, making sure that medications are taken on time, but she didn’t hold the gravity that there is this event called SUDEP that can happen in people. Your son may be a little bit more at risk because of his individual lifestyles, the age he is, factoring in how lifestyles change. So yeah, I think if Anthony had heard that consistently, maybe every visit, there’s a check-in about what’s changed. Did you go off to college? Are you not sharing a room with your sibling anymore? Maybe there’s more alcohol use. Has there been another nighttime seizure? I think if Anthony had heard this from a trusted clinician, which, he did trust his neurologist, he could have made a different decision. Would he have? We don’t know, Kelly, but he was never given the chance.
Kelly Cervantes:
Right, and that’s the important part, is that you want the information so that you can make the best possible decisions with that information. Having written a book on grief myself, having shared a similar but very different story, we are a part of two really, really crappy clubs, and I wonder for all three of you, I would love for all three of you to please answer this, and just, what is it that sort of helped you with your grief? As you mentioned, it’s been five and a half years, which I’m sure feels like a blink of an eye, and also, an eternity at the same time. But you are here talking with me today, you are advocating, you are fundraising, what has helped you get to this place where you can remember Anthony with joy and not just the pain of that grief, which will always be with you, but with joy, too, because it takes a minute for that joy to come back?
Austin Maffie:
I’ll go first, I think we can all agree to this, I think the love and support of friends and family and just our town was incredible. I think the first week or two, our house had 50 plus people packed at it for 18 hours a day. Just seeing people showing up at any time was awesome. And even still today, I’ll get texts once in a while from his friends, my friends, just keeping him alive, and it feels like he’s here and keeping his light and spirit still with us.
Lisa Maffie:
Yeah. We mention Anthony a couple of times a day. We talk about Anthony’s room, we talk about Anthony’s clothes, talk about Anthony’s dogs. I think the fundraising is huge, because it does bring him into the room and into the area. And we just came off of this huge CURE walk, and I saw teachers came from his elementary school, he had friends from elementary school and high school that came by, that I had not seen, because we had it in his hometown. It was just amazing. And yeah, the pain is always there, and you mentioned this in your book, Kelly, and I’ve always known this, I don’t know how I’ve known it, maybe from all the grief support that I got early on, but Anthony’s memory can be filled with joy right here on the right hand, and on the left hand, you can have so much profound sadness that he’s not a part of our everyday life, and they will forever exist together. But the joy is there, and sometimes it’s a struggle to find it, but you have to purposely choose it.
Kelly Cervantes:
Yeah. Bob, what about you? What has helped you come to this place?
Bob Maffie:
I would say, yardwork. His bench. I’d say, just to keep busy. Yeah, just trying to stay busy. I think if you just stay idle, you’re going to remember all of the sadness instead of … That’s why we chose to have the bench in the yard instead of having a grave site because we wouldn’t have visited it as much as we see it.
Kelly Cervantes:
I love that so much. And you mentioned staying busy, and the three of you certainly have pouring energy and efforts into various fundraising activities. Can you tell us about some of those and why they’re important to you?
Bob Maffie:
Yeah, I think that, like Austin said, the town, I think over 1,000 people went to his wake. It’s continual to see so much support that it’s hard not to do it.
Lisa Maffie:
Yeah, so I think when there’s fundraising in the town of Canton, it really is very special to the people that live here. They know us and our family. Bobby does a ton of work for the veterans, so we are giving back in other ways, and then, when there’s a fundraiser for our son, so obviously, it’s the CURE Epilepsy memorial walk, which was huge. We also purchased, I don’t know if you can see this-
Kelly Cervantes:
Yes.
Lisa Maffie:
… our magnets. They’re all over Canton, my work uses them as well. We feel like you need to see SUDEP and epilepsy together in order to understand the impact of it, so the more we can make it public … But we’ve also had yoga fundraisers, and we have a scholarship in Anthony’s name that we give to his high school for an up and coming nurse every year in his name, as well as, there’s a little league scholarship for him because he loved baseball. And then, Austin, maybe you can talk about the Honey Dew scholarship that you kicked off.
Austin Maffie:
Sure, so I worked at Honey Dew for five years, I believe, and I think it might’ve been when Anthony took the year off, I actually got him to work there, too, for a little while. But a local coffee shop in Massachusetts, and we decided to run a fundraiser and do purple donuts in his name. So we had, actually, one of the girls that works there, Anna, she’s a great baker, she made five, six hundred donuts. But it was an awesome fundraiser, [inaudible 00:26:13] started it off, and people from all across Canton, even other towns, our whole family came by, and just bought purple donuts. And that’s how I think we really started to get the ball rolling on fundraisers for Anthony.
Kelly Cervantes:
That’s amazing, I love that. Nothing like a purple donut to bring people out in support. Considering everything that you know now, and unfortunately, I feel like this is so often the case with SUDEP, it’s only after it has touched our lives that we really understand the scope of it, we are informed on the risk factors, and are then out here fiercely advocating, as your family is, so, so wonderfully, so beautifully, so fiercely, in Anthony’s honor. And what do you wish for the families out there who are listening to this who aren’t familiar with SUDEP, who are maybe a little bit scared, because you know what, it’s scary, what do you want them to know? What is the information that they should have, or the questions that they should be asking their neurologist to get the information that they need?
Lisa Maffie:
Yeah, that’s a great question. I think that an active epilepsy management plan is always very individual per patient, depending on the seizure type, depending on their age, depending on their readiness for college or readiness to move out on their own. So I think that they should be asking, what is my child’s, or what is my individual risk for SUDEP, and is there anything that I can do to lower the risk of seizures, which then may also lower the risk of SUDEP? And it’s not a one-off conversation, make sure that conversation keeps coming up, because lifestyles change, people work nights, people, relationships in and out [inaudible 00:28:01] nobody in the home with them.
Some type of alarm [inaudible 00:28:05] nighttime, maybe [inaudible 00:28:07] alerts another person to the seizure. I feel like we need to talk about SUDEP more, not only just with neurologists and patients, but their primary care, the nurses they come into, the social workers, who can help to support them on this journey. The more we give it words, we take it out of the shadows, and we say, yes, it’s a rare, tragic event, but it’s something we need to make sure you’re aware of so that you can make some choices.
Kelly Cervantes:
Yeah, because it’s the simple changes that might save a life. And if you know and it still happens, that at least it removes those what ifs. In every situation, it’s of course, heartbreaking, and I am sending you all so much love and strength. I am so appreciative of you coming on and sharing Anthony with all of us, informing people with this information that they need to know. They need to know the reality of the situation, and so, I’m just incredibly grateful. Thank you all, appreciate you.
Lisa Maffie:
Thank you, Kelly, for having us, yep.
Bob Maffie:
Thank you.
Austin Maffie:
Thank you.
Kelly Cervantes:
Thank you, Lisa, Bob and Austin, for sharing Anthony’s story with us, and for your continued efforts to raise SUDEP awareness and funds for SUDEP research. CURE Epilepsy has been a leader in SUDEP research for more than 20 years, from funding the first ever SUDEP registry, to our current research around the biological mechanisms of SUDEP, we have made SUDEP a priority area of focus. CURE Epilepsy aims to raise SUDEP awareness, provide information and education, and push the research community to better understand SUDEP risk factors that can lead to prevention. If you would like more information on SUDEP, its risk factors, and the research being conducted, please visit cureepilepsy.org. Thank you.
Legal Disclaimer:
The opinions expressed in this podcast do not necessarily reflect the views of CURE Epilepsy. The information contained herein is provided for general information only and does not offer medical advice or recommendations. Individuals should not rely on this information as a substitute for consultations with qualified healthcare professionals who are familiar with individual medical conditions and needs. CURE Epilepsy strongly recommends that care and treatment decisions related to epilepsy and any other medical conditions be made in consultation with a patient’s physician or other qualified healthcare professionals who are familiar with the individual’s specific health situation.