A Conversation with a Psychologist born with a Congenital Heart Defect

In this episode of Heart to Heart with Anna, Dr. Liza Morton rejoins Anna to talk more about polyvagal theory, how feeling safe is important to those born with congenital heart defect, especially when they are in vulnerable conditions (such as when they're facing hospitalizations or experimental procedures) and how understanding the embodiment of their experiences can be both empowering and healthy. She also addresses how Heart Warriors may come to experience at least one kind of Post-Traumatic Stress Disorder (PTSD). She even relates how older Heart Warriors may have experienced attachment problems due to common medical practices in the 1950s, 1960s and even 1970s or 1980s. To find out what kind of PTSD circumstances are common for those born with congenital heart defects and what they can do about it, tune in to this episode of Heart to Heart with Anna.

Transcript

Dr. Liza Morton: 0:00

We tend to have quite unique experiences and it's harder to find people to share that with.

Anna Jaworski: 0:09

Welcome to Heart to Heart with Anna. I am Anna Jaworski and the host of your program. I am very excited about today's show to feature a very special psychologist. Today's show is entitled A Conversation with a Psychologist Born with a Congenital Heart Defect. Many of you know Dr. Liza Morton from our interview with her last week. But for for those of you who didn't hear that episode, Dr. Liza Morton is a counseling psychologist with a background in research. Liza was born with congenital heart block and an atrial septal defect. She has had countless interventions, most notably starting with her first pacemaker at 11 days of age, which was a world first in 1978. She had open heart surgery to repair her ASD at age 12 and her 11th pacemaker in 2018. Liza is passionate about improving care and the wider experience of living with a heart condition from birth. Liza’s current research interests include using a Polyvagal lens to better understand the psychosocial impact of living with a heart condition, the impact of patient clothing on wellbeing and recovery, and using psychologically-informed medical care to prevent medical trauma. In the first segment, we’ll talk with Liza a little more in-depth about the research she is so passionate about. In the 2nd and 3rd Segments Liza will be in the studio with a live studio audience and she’ll answer the questions they may have. Welcome to Heart to Heart with Anna, Liza.

Dr. Liza Morton: 1:07

Hi. Thank you for having me.

Anna Jaworski: 1:44

Oh, I'm so excited to be doing an international show and for those of you who are listening, Liza is talking to us from Scotland. I am in Texas and we have audience members from the United States and Australia. So Liza, let's talk about your research. I was so amazed when I saw your interview on YouTube and there'll be a link to that on the website, and I was fascinated to see some of the research you've been doing over the last several years. It's really interesting. Let's talk about the polyvagal theory. That is something that we talked about in our interview last week, but I'm wondering if you can tell us a little bit more about that. What is it and what parents can do regarding this theory?

Dr. Liza Morton: 2:36

I guess we spoke about this last week and I explained what the polyvagal theory was and is. I think that it provides us with a framework that is really useful because it enables us to understand our bodily expedience better. And that's incredibly empowering for people because you then have a language to use to share with others how you feel, and then being able to do that is a gift in itself because you can then understand your own expedience and explain that with others and share that and when you can't do that, that can be psychologically harmful. An example from personal expedience would be, when I was growing up, my pacemaker was at a fixed rate so my heart rate can go up or down til I was 12 and I find that quite limiting. But at the time we were told that I should be able to function normally and I should be able to just do what other kids were doing, but physiologically I couldn't. And that was incredibly confusing. So I think it is important that we are able to share our bodily experience with other people. And usually that's something that would happen naturally with peers. But if your body works a little bit differently then that can be isolating. So I think this perspective also, there's a real importance within the polyvagal theory about safety. It highlights the importance of safe relationships. That then provides a framework to inform how things could maybe be better for best populations. For example, having compassionate loved ones during times of stress is incredibly important. And so we think about that within the medical setting, making sure that parents or main care givers are there for children and in intensive care that they are able to touch and sing and sooth their children. And of strategies that I spoke about last week as well to enhance feelings of safety.

Anna: 4:24

Right. I think that's very interesting and times have changed so much and it's research like this that have helped us to have a much more improved experience for the patients and for their families, too. It's interesting because a few weeks ago we were featuring my producers mother, David Franco's, mom, and she was talking to us about raising a child over 50 years ago with a heart condition and how she wasn't allowed to stay in a hospital.

Dr. Liza Morton: 4:57

Yeah, I know. It's quite unbelievable to think about that now, but that's something I hear often when I present on this. I've had many people come to me afterwards and say that they were maybe hospitalized in the fifties or the sixties or even the seventies and maybe in hospital for up to six months and an oxygen tent and the parents were maybe just visiting weekly. But that was standard practice. In the work of a psychologist, James Robertson, and he had quite a famous book,"The Young Child Goes to Hospital" and it was around about the same time as the attachment work that Bowlby did and he was able to demonstrate that children and hospitals at that point it was seem that they would calm down if the parents weren't there, actually he showed that they weren't calming down, they were shutting down and we really need to have the main care givers there. Cause the way I see it trauma is almost sort of the flip side of safety. So we want to feel as safe as possible to try and mitigate against trauma. The biggest protective factor for feeling safe, particularly for children but for all of us is to have your loved one present, and we see that from so many studies even in war times or other things when major trauma is going on. The most protective thing is to have your main care giver by your side soothing you, containing you. I'm hugely passionate about making sure that that happens. Not only can that happen from the main care giver, but we can also improve those feelings of relational safety by having medical staff trained and the importance of compassionate care giving by making sure that medical teams are consistent. And that was one of the things that even back in the fifties and sixties James Robertson advocated was that the nurses and doctors don't show up and change all of the time. There's a consistent care team and I think there's a lot of things that we could be doing in the hospital setting to improve that kind of feeling of safety.

Anna Jaworski: 6:58

Oh, absolutely. Absolutely. When my son was in the hospital, it was interesting to see how many different nurses and respiratory therapists and other doctors came in and out. And it was very gratifying to me when the same nurse would come back the next day because she knew my child's name and she knew what had happened the previous day. And you develop a relationship with them.

Dr. Liza Morton: 7:25

And that's so important.

Anna Jaworski: 7:27

Right, right. And so my mother was coming up to the hospital every day with me and she got attached to the nurses too, we got to know the nurses, the names of their children, and my mom would go and buy food for lunch for all the nurses that were taking care of my son. It just becomes your support system.

Dr. Liza Morton: 7:53

It does and I think that that's one of the issues with the adult population today because although, hopefully, their understanding is growing with children and things have improved. What we have are today's adult population have missed out because they may not have had that in childhood or their parents may not have been there, but then we also have huge problems with inconsistency of care for adults because services haven't evolved in time to meet our needs. That again creates uncertainty on top of the uncertainties of the condition itself as well.

HomeTonight4Eve: 8:43

Home. Tonight. Forever by the Baby Blue Sound Collective, I think what I love so much about this CD is that some of the songs were inspired by the patients. Many listeners will understand many of the different songs and what they've been inspired by. Our new album will be available on iTunes, Amazon.com, Spotify. I love the fact that the proceeds from this CD are actually going to help those with congenital heart defects. Enjoy the music. Home. Tonight. Forever.

H2HWMichael: 9:34

"Texas Heart Institute were offering us a mechanical heart and he said,"No, Dad, I've had enough. Give it to someone who's worthy."""My father promised me a golden dress to twirl in. He held my hand and asked me where I wanted to go.""Whatever strife or conflict that we experienced in our long career together was always healed by humor." Heart to Heart with Michael... please join us every Thursday at noon Eastern as we talk with people from around the world who have experienced those most difficult moments.

Rejoiner: 9:40

You are listening to Heart to Heart with Anna. If you have a question or comment that you would like addressed on our show, please send an email to Anna Jaworski at Anna@HearttoHeartwithAnna.com. That's Anna@HearttoHeartwithAnna.com. Now back to Heart to Heart with Anna.

Anna: 9:59

Before the break we were talking with Liza about some of the research that she has done and her colleagues have done, but now we're going to open the floor to members of our studio audience and we're going to start with a question from Megan in Australia. Welcome to Heart to Heart with Anna, Megan.

Megan from Aust: 10:16

Hi Anna. I'm happy to be here. Thanks so much for inviting me. I feel so lucky to get to actually talk with Liza after I saw one of her articles on the conversation a few weeks ago. You've talked a lot about the importance of having the primary caregiver there for young children in hospital and I totally agree. When I was in hospital, my mother or father was pretty much always there, which was great, but I was wondering what your vision might be for an adult or teen that might be in the hospital.

Dr. Liza Morton: 10:56

I think that's a really important question, Megan, and I'm glad that you brought that up. I think it's just as vital for us to have a loved one there as we get older. I can remember from personal experience when I became kind of a teenager, I wanted that separation and it's hard and I think that you have to figure out yourself. But if you think about any other health condition, if you were suddenly ill, you wouldn't be going to the hospital yourself, you wouldn't be there on your own.

Megan: 11:26

That's true.

Dr. Liza Morton: 11:27

So, why would we do that? Because it's a long term condition that comes and goes all the time. In fact, if anything that would mean that we would probably need that support even more because we have memories of having been in hospital historically and probably going forward. So I think in his attachment work Bowlby has stated at times about health. All of us need that secure attachment and personally I think that's completely true. It might not be your parent anymore. It may be a friend or a partner or somebody else that's close to you or it might be a variety of people, but, but we know that safe relationships are hugely protective in terms of mental health outcomes across the board. So why would that be any different for us?

Megan: 12:18

Yeah, that's right. I remember I came back into the hospital sort of quite suddenly when I was about 25. I was quite surprised that they are bringing social workers and psychologists around to talk to me rather than just a cardiologist, which I thought was wonderful.

Dr. Liza Morton: 12:36

Yeah, that sounds good. All the farming there.

Megan: 12:41

Yes. Yeah, definitely. But for me it was always good to have somebody. I felt like also as an adult I was aware of how much time I was taking up from my family because I knew that they had to work. I wanted them to get on with their lives, but I think it would be a good thing to have more in hospital support, like having someone from say an Adult Congenital Support Service come to visit or something like that, or common ward for the congenital patients because I hardly ever saw any others follower us there. I was in there with people who were sort of in their sixties and seventies and I didn't see any other young people.

Dr. Liza Morton: 13:26

That's tough and I think that is a really good point in terms of peer support it's so important too. I know there are all sorts of ways that having more social support can be facilitated. That's embeded with home service. It doesn't just have to be mom and dad anymore and it can be friends. Yeah. Like you say yours.

Megan: 13:49

Well I spent a lot of time on Facebook followers there.

Dr. Liza Morton: 13:54

Yeah. I think that all of these kind of forums on Facebook are hugely popular and that's why. Lots of offers that can of peer support. You have common experiences and then normally kind of throughout life would quite easily have common experiences with our peers and other people around us. We tend to have quite unique experiences and it's harder to find people to share that with. That's one of the wonderful things I suppose about the communication age and everything, like Facebook or social media because we can then link in and find other people and share.

Megan: 14:29

Yes, definitely. Is it okay if I ask another question?

Anna Jaworski: 14:35

Absolutely.

Megan: 14:36

So just thinking again about the kind of psychological and social work support I've encountered in the hospital. The staff were always lovely. They wouldn't sort of touch on the idea of of safety and trauma so much. It would be sort of more the talk therapy, cognitive behavior therapy and then getting into resilience and mindfulness as well and I mean I did a bit of reading of my own and I personally found logotherapy quite interesting about searching for meaning in your life and I think probably different things will work for different people. But I guess again, what would polyvagal therapy look like? If you went to a consultation with a polyvagal therapist and if there was such a thing available.

Dr. Liza Morton: 15:33

This is an area that's quite new and that's developing. So I read about polyvagal theory and it just really fit in with my own experiences and what I kind of understood more than other things I had read and the safety and trauma aspect, which I think has been missed in by lot of interventions for people with congenital heart disease.

Megan: 15:58

I agree.

Dr. Liza Morton: 16:00

I emailed Professor Porges and I explained my own situation and said I thought I had implications for people living with the heart condition and surprisingly he just emailed me right back and he said,"Of course it does, but this hasn't been looked at and I've never spoken to anybody about this before." And he happened to that point be writing the book in clinical applications of Polyvagal theory and he invited me to write a book chapter developing these ideas. So it's all very new. As far as I know it's the first time it's been applied to congenital heart disease. And so what I tried to do is, in that book chapter and then in a journal article I just had published is develop some of this, because psychology is increasingly moving towards more body and holistic approaches. I think the main body, the question is about a false dichotomy. They're learning so much more about the links between the gut, the heart and the mind and if part of that is maybe congenitally not quite in tune with the rest of the body, then intuitively it makes sense then that's going to have an effect on everything else. I guess it's about having that more holistic understanding and then using that framework to then think about, well, what can we do? And there are lots of established techniques that have already been developed and within the cannot body psychotherapy field for people who've experienced trauma that we can bottle or use that are more about safety and stabilization. So well, as you said, rather than kind of talking therapy, you need to kind of be engaged in your social engagement system and you need to be feeling quite safe to do that, so if you're not in that place, then that's not necessarily going to work. So doing some more kind of body techniques to get your body into a place where you can be in that system first, then that may be more beneficial.

Megan: 18:04

Yes. Yeah. When I read the article, it was certainly a bit of a light bulb moment for me and I shared it with some sedge dare groups on Facebook and those are overwhelming, you know? Yes, yes, yes. This is me. I think back to when I was a child and I definitely had things like separation anxiety. I was scared to go to school. I would freak out on school camp. Didn't like the sound of the telephone. These are all little things that were kind of weird.

Dr. Liza Morton: 18:41

I think that's what's terrible about it, its just even having that understanding, cause I had the same expedience but I, and I read about this. It was like suddenly I was able to understand my own experiences. I've always had unexplained physical symptoms that were never put down as having anything to do with the cardiac condition. But I thought myself, there must be some link here and just suddenly it just, it made sense. And I think that's incredibly empowering. I think, okay, I can understand what's happening here. And then you can share that and then you can do things about it as well.

Megan: 19:17

Yes. Yeah. No, that's, that's true. I have done a lot of reading into CHD just to try and learn. And it's amazing how often I see things and go, well, isn't that strange? I've always thought that it's something that I've been told isn't linked or shouldn't be happening and...

Dr. Liza Morton: 19:40

Yeah, and that's psychologically that's very distressing isn't it when you're told you shouldn't be feeling something that you aren't feeling. That's incredibly confusing.

Megan: 19:50

Well, it was, and to me I always, I would feel like, gee, are the adults lying to me. And I know now that they've probably weren't, they were probably just saying what they knew at the time, but I always felt like people lied to me.

Dr. Liza Morton: 20:08

I think that what's happened is the medicine has come on so far in the last 50 years and it's amazing because all of us wouldn't be here. And so that was a huge success, but I think that a lot of them are now dependent on medical treatments that are perhaps less humanized and then, you know, it would be a normal human experience. And we haven't really caught up with that in terms of the psychological and emotional impact, that it just hasn't been considered. I think that we've got quite a bit of catching up to do.

Megan: 20:40

Yes. Yeah, I think particularly for adults. I was visiting a children's hospital recently and it was just beautiful. They set it up just like a home. They had activities for the children, music therapy. The parents were welcomed and they had a common room with meals and things like that and it was amazing.

BHP Promo: 21:04

Anna Jaworski has written several books to empower the congenital heart defect or CHD community. These books can be found at Amazon.com or at her website, www.babyheartspress.com. Her best seller is'The Heart of a Mother,' an anthology of stories written by women, for women in the CHD community. Anna's other books,'My Brother Needs an Operation,''The Heart of a Father' and'Hypoplastic Left Heart Syndrome: A Handbook for Parents' will help you understand that you are not alone. Visit babyheartspress.com to find out more.

HUG Message: 21:46

Heart to Heart with Anna is a presentation of Hearts Unite the Globe and is part of the HUG Podcast Network. Hearts Unite the Globe is a nonprofit organization devoted to providing resources to the congenital heart defect community to uplift, empower, and enrich the lives of our community members. If you would like access to free resources pretaining to the CHD community, please visit our website at wwwcongenitalheartdefects.com for information about CHD, the hospitals that treat children with CHD, summer camps for CHD survivors, and much, much more.

Anna: 22:21

Before the break we were talking with Liza and we actually had a member of our studio audience Megan Tones?? all the way from Australia who was asking Liza some more questions about the polyvagal theory. It was really fascinating. Now we have a member of our studio audience from Austin, Texas. Welcome to Heart to Heart with Anna, David.

David: 22:43

I'd like to ask a question and I need to start with a little bit of history. I'm 52 years old and recently we spoke about the touching when you were a child about the adult. They mentioned actually skin to skin contact. My father would have also called it caressing the baby, feeling the touch of the parents and I know there are studies that show it, but is there anything that particularly stands out when a person is neglected like that? And do you see things that are actually typical that happened?

Dr. Liza Morton: 23:29

If you don't have that, do you mean?

David: 23:29

Yes, correct. If there's no contact, if the child is isolated for a while.

Dr. Liza Morton: 23:37

We know that touch is incredibly important. There was a study done back in the fifties on Harlow's monkeys. I don't know if you've heard of them, it's a very famous psychologist study where monkeys were left in isolation without their mother and the ones who had some kind of fabric that was soft and reassuring were the ones that did best. And there's also been a lot of work done by Bowlby on attachment and this was in the early days and since then going forward, this is all being backed up by a lot of neurological studies. So we know that touch is incredibly important for normal neurological development and attachment secure and safe attachment. And the attachment that we have with our early care providers provides the template going forward for future relationships. So it's incredibly important.

David: 24:36

I see.

Dr. Liza Morton: 24:36

And more recently there have been studies on things like what they call kangaroo care. So when they have premature babies and they are held next to the mom's skin or dad's skin they tend to put on weight and have higher rates of survival. So there are a lot of studies out there, many of which I've sighted drawn on in my own work. And we also know things like when a doctor provides a reassuring touch too, even just a handshake that has enhanced survival rates. So just simple things like that. I can remember when I had surgery just last summer to have lead extraction and one of the things I really remember is that when I was waiting pre-operatively and obviously quite anxious, the surgeon came to see me beforehand and he just patted my leg before he left and said,"Well, you know, I'll see you in theater". And just that one gesture, I just immediately felt safe and reassured. These things do matter much more so than we previously thought, I think.

David: 25:49

I mention this because through many parts of my early life when I was left alone, much like you, I was given a pacemaker at an early stage, not as early as you. But I had an early pacer implanted and I was constantly being checked and being catheterized, hospitalized, poked, prodded, and it was almost very normal to me. And I'm wondering if I was conditioned for that setting because of how I was brought up as an infant and I guess it could affect everyone differently, but can a person have PTSD and not recognize the symptoms?

Dr. Liza Morton: 26:32

If you're looking at it formally, PTSD has got two different types. So the first type is simple PTSD where you have maybe one incident, say a car accident and you maybe relive that expedience and you have like your body gets stuck and a red light's on and you're in that alarm place. And you maybe have flashbacks. There's a second type of PTSD, which is complex PTSD and that's when you've had more than one traumatic event. And usually they kind of build up all the time. And some of that can be relational as well so that some of the people involved in your life maybe that you've loved, caused harm. And so I think that when we're talking about congenital heart disease and people would have multiple interventions are probably more of a complex PTSD picture. The characteristics of that, are just generally be more anxious and more hyper-vigilant. Maybe having nightmares, flashbacks. And the way I see it, I'm not a psychiatrist and I don't tend to work with diagnostic categories. I think that it's more helpful to just provide a fuller understanding of that person's orderly experiences and that's why I like the Polyvagal theory that I've spoken about it because it's not so much in terms of diagnosing somebody whether they do or you don't have that. I don't think it's that black and white. I guess if you look at it from a polyvagal perspective, what we would be seeing is that where maybe when you've had many traumatic experiences and maybe if you have an underlying heart condition, than you maybe more likely to go into a mode where your body feels threatened. Does that make sense?

David: 28:20

Absolutely.

Dr. Liza Morton: 28:22

It's not that you're different or in some different category, it's just that the cause of your bodily experiences, then you're maybe more likely to go into that mode where you feel like something bad is going to happen. To me, that just absolutely makes sense because if a lot of bad things have happened to you, then why wouldn't you feel like that your body's kind of become programmed to do that. And I also think that potentially because of the heart condition itself, because our heart rate is so integral to how our body decides whether or not the environment is at rest or not, then if that's a little bit out of kilter, then we might be more likely to go into that mode too. I wouldn't advocate diagnosing everything with PTSD. I think it's more of a spectrum and it's more kind of thinking of it that way and think, well actually maybe I'm just a bit more vulnerable and therefore maybe it would be helpful for me and my body to recognize that and then have strategies to get back into the place of feeling safe. I think it's so important.

David: 29:24

It has helped. Thank you, it has helped. Yes, it really has.

Anna Jaworski: 29:31

I want to thank Liza also for coming on the show. I can't believe our time is already up. This has been a really fascinating program. Thank you so much, Liza, for coming on the program today and sharing your experiences and advice with us. It has been really eyeopening.

Dr. Liza Morton: 29:48

Thank you so much for inviting me. It's been a pleasure. Oh, it has been so much fun. And thank you to my live studio audience. You guys have been awesome. This really has been an international show. I'm really excited by the wonderful and in depth questions that we've had, but that does conclude this episode of Heart to Heart with the Anna. Thanks for listening. Find us on IHeartRadio and subscribe. And remember my friends, you are not.

Conclusion: 30:16

Thank you again for joining us this week. We hope you have been inspired and empowered to become an advocate for the congenital heart defect community. Heart to Heart with Anna, with your Host, Anna Jaworski, can be heard every Tuesday at 12 noon Eastern Time.