Heart to Heart with Anna

The Mental Health of a Heart Mom

January 21, 2020 Helen Simpson Season 15 Episode 3
Heart to Heart with Anna
The Mental Health of a Heart Mom
Chapters
Heart to Heart with Anna
The Mental Health of a Heart Mom
Jan 21, 2020 Season 15 Episode 3
Helen Simpson

Heart Mom veterans and dear friends, Helen Simpson and Anna Jaworski discuss a concern they have regarding the mental health needs of women whose babies have been identified with congenital heart defects and need surgery. As mothers of young adults with congenital heart defects, they talk about their own stories of diagnosis and treatment of their children's conditions and how it made them feel, how they dealt with their children's hospital stays and what they believe could help both mothers and children alike when they are in the hospital together. They also explore the kind of support that was available to them over twenty years ago versus the support that is available to heart families today and share their hard-earned advice with newly identified heart families.

Links mentioned on this episode:

Baby Hearts Presshttps://www.hug-podcastnetwork.com/shop-baby-hearts-press.html/

Little Hearts Matter: https://www.lhm.org.uk/


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Show Notes Transcript

Heart Mom veterans and dear friends, Helen Simpson and Anna Jaworski discuss a concern they have regarding the mental health needs of women whose babies have been identified with congenital heart defects and need surgery. As mothers of young adults with congenital heart defects, they talk about their own stories of diagnosis and treatment of their children's conditions and how it made them feel, how they dealt with their children's hospital stays and what they believe could help both mothers and children alike when they are in the hospital together. They also explore the kind of support that was available to them over twenty years ago versus the support that is available to heart families today and share their hard-earned advice with newly identified heart families.

Links mentioned on this episode:

Baby Hearts Presshttps://www.hug-podcastnetwork.com/shop-baby-hearts-press.html/

Little Hearts Matter: https://www.lhm.org.uk/


Please take a moment to follow us on your preferred social media platforms:

iTunes: https://itunes.apple.com/us/podcast/heart-to-heart-with-anna/id1132261435?mt=2

Facebook: https://www.facebook.com/HearttoHeartwithAnna/

YouTube:  https://www.youtube.com/channel/UCGPKwIU5M_YOxvtWepFR5Zw

Instagram: https://www.instagram.com/hugpodcastnetwork/

If you enjoy this program and would like to be a Patron, please check out our Patreon page: https://www.patreon.com/HeartToHeart

Support the show (https://www.patreon.com/HearttoHeart)

Helen:

Obviously, we don't know what the future holds, but yes, there is a sense of being, just for however long we don't know how long, but being able to put down that burden and just kind of breathe a little, live a little.

Opening Music:

.[inaudible] .

Anna:

Welcome to Heart to Heart with Anna . I am Anna Jaworski and the host of your program. Today's episode is called The Mental Health of a Heart Mom. I always enjoy meeting heart parents face to face, but it doesn't happen as often as I would like. Since 1994 when my second son was born with a heart defect, I have met people from all over the globe who have children with heart defects. Today's Guest is someone I know and have known for almost two decades, but I've only come to meet her face-to-face yesterday. Helen Simpson is mother to Alasdair, Ellie and Catherine. Alasdair was born with hypoplastic left heart syndrome. Helen first found me because of a book of essays I had put together called The Heart of a Mother. In the book I included my email address and Helen took the time to write me a note. This was when the Internet was young and before Facebook or Instagram. Today's program is very special because Helen and I are talking face-to-face. We're actually in the kitchen of the Airbnb I'm staying in in Canterbury, England, so I'm very excited. Normally I use Skype to record long distance on my computer, but today I'm actually sitting in the kitchen with Helen. We've had a nice cup of tea and we all already to have this lovely conversation about the mental health of being a heart mom. Our Patrons are in for a treat because we plan to have something special for them as well, but that will be a surprise. If you're interested in being a Patron, check out our Patreon page. That's www.patreon.com/hearttoheart and sign up! For as little as $2 a month you can be a Patron and you will get certain benefits as well, depending on the tier you belong to. Now today, Helen and I will be discussing Helen's history as a heart mom and why we believe it's important for us to consider parents' mental health after a child has been diagnosed with a critical congenital heart defect. Welcome to Heart to Heart with Anna, Helen .

Helen:

Hello. I'm really pleased to meet you. It's been lovely.

Anna:

Oh, we've had such a great time and I can't wait to get into this topic. I want us to start by having you tell us when your son's heart defect was diagnosed.

Helen:

Well, when Alasdair was 10 days old, he'd been signed off by the midwife. We'd had a midwife visit every day for his first 10 days and he'd been signed off as healthy. But after this happened during the night, he wasn't well. I was quite worried about him and he hadn't been feeding properly over the first 10 days, but it hadn't really been picked up by the midwife. It was holiday time and the midwife kept changing each day. So there wasn't really good continuity and I think probably that impacted on our ability to work out the story and to see what was happening properly with Alasdair. So, as I said, he was sick in the night and he hadn't actually fed. So I knew that that wasn't normal. And in the morning he screamed in a way that really worried me. So I got David to ring the midwife who couldn't come out, but we were directed to the GP. Actually we should have gone to the emergency. We should've gone to A&E straight away. But we didn't. We went to the GP and we realized Alasdair was very unwell and we were directed to our local children's ward where he was treated as an emergency. We were very lucky. There was a consultant who had experience with heart babies. And so he was given prostaglandin and that, in effect, saved his life because it meant that he was able to survive long enough to be blue lighted to Guy's Hospital in London where he was treated.

Anna:

Right. So what I found interesting was a parallel between our stories when we were talking yesterday, you knew way before he was diagnosed that something was wrong and you kept saying something to the midwives but nobody seemed to pick up on it.

Helen:

I mean, I don't know, call it a mother's instinct, but yes, I was very, very anxious. It was my first baby and I think I was too easily persuaded that the problem was in fact my anxiety rather than the problem with the baby.

Anna:

Right, right. The same thing happen to me. They were treating me like I was an overprotective parent and Alex was my second child, but they kept telling me, "Don't compare him to your first child. Every child is different." He came three weeks early and there were all of these excuses. So I found it interesting how you and I had a very similar experience where we knew in our hearts something was wrong, but the professionals were not agreeing with us. So after Alasdair's heart defect was diagnosed and it was very serious -- hypoplastic left heart syndrome -- so it wasn't something that could have been put off much longer.

Helen:

It couldn't have been put off any longer.

Anna:

Right. It's a miracle that he survived as long as he dig.

Helen:

Yes, yes, no , he collapsed. He was gray. He was limp. We were extremely lucky.

Anna:

Yes.

Helen:

And we're very lucky that the GP actually very quickly when we finally got to see somebody and we, because we only live a few minutes away from our local hospital, we were able to do, she said it was quicker than getting an ambulance. We jumped in the car and um , and took him straight there.

Anna:

Absolutely. Well tell me what kind of supports you had after the diagnosis because this was quite a while ago. We haven't yet how old Alasdair is.

Helen:

He's twenty well, he's almost 20 .

Anna:

So this was, you know, two decades ago. Just about. Okay.

Helen:

So when we arrived at the hospital, because we had to follow the ambulance, a lovely thing, just as we got out of the car, hugely worried, the ambulance driver gave us a little thumbs-up so that we knew he was alive, which was lovely. And we got a huge amount of support from friends and family who were absolutely wonderful and looked after us, looked after Alasdair when we needed it. Looked after things at home and also at that time there was an organization could Echo, which is a parents group linked with Evalina Children's Hospital and they were just setting up and I became involved with them. Um, so I was able to meet some other parents that way, but at the time we didn't have Facebook, we didn't have social media. So actually your book was hugely instrumental. It was the first time that I really connected, I felt connected emotionally with other parents because I read their stories and I guess it made me feel not so alone.

Anna:

Right. That was the whole purpose of the book. And that's the whole purpose of this podcast, which is why I always end the show with reminding my friends, all of my listeners, you're not alone. I think for me that was probably one of the worst parts of having a child with a heart defect. All of my friends had children who were healthy and I just didn't, I didn't feel connected with them in the same way anymore and I couldn't have my child around other little children who were sick. It's very isolating. And you definitely do feel alone. So yeah, that was the whole purpose of putting the book together was to let people know they weren't allowed and also to give them hope. And I'd like to think that this podcast is another way that we are giving hope to people who are living with congenital heart defects because we talk about everything. But it's so much fun for me today to talk to you. We are considered "old moms." Since our children have made it to their second decade, which is really exciting because when our children were diagnosed, we were not given a very hopeful outlook, were we?

Helen:

No, we were given a statistic, 50/50 chance of survival to five. And that statistic just, it went round and round in my head. I just couldn't come to terms with that. I found that very difficult to hold it in my head. Um, and yes, the most important thing about the book, even though I did cry a lot,

Anna:

I cried, too. I cried, too, Helen!

Helen:

I did cry a lot. But yes, it did give me hope because there are stories of heart survivors who, who were older, who had gone through the journey that we were just beginning. So yes, it , it gave me hope.

Anna:

Yeah. Well, good. That's what that book was supposed to do. For any of you who are interested in the book we're talking about, it's called The Heart of a Mother and if you go to https://www.babyheartspress.com you can see what we're talking about. Well, let's talk about the greatest sources of information and support that you got when Alasdair was young. And I know things are probably different now here in the U K but way back when, twenty years ago or 18, 19 years ago, what were your greatest sources of information?

Helen:

Um, well definitely, yeah, definitely friends and family like you said. Um , Evelina, her organization. I did look online. I joined a parent chat group online. But yeah, I do think it is very isolating. It was hard to get the support that I needed to be honest.

H2HwMichael:

"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.

BabyHeartsPress:

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.

Rejoiner:

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 [email protected] That's [email protected] Now back to Heart to Heart with Anna.

Anna:

Last night, Helen, when we met face-to-face for the first time, we were talking about how our mental health as parents of children with chronic illnesses were treated when our children were young. So let's talk about why you feel that parents may need some assistance when it comes to our mental health.

Helen:

Finding out your child is ill and ill in the longterm, it's hugely traumatic. And even planned hospitalization is extremely difficult for parents and families.

Anna:

Yeah,

Helen:

So add on top of that an emergency hospitalization -- it's very traumatic for the parent and you end up focusing so much on what the child needs that it's very easy to forget your own needs and often very well-meaning people, they're always asking, 'How is the child?' - which, of course, that's important and they want to know and you want to fill them in and your whole focus is on how the child is. But again, your needs can become forgotten in amongst all that. Also not all people experience the hospital environment alike, so it's easier for some people, I think, to adapt to that environment than others. For me it feels like a really alien environment and especially as a mother of a young baby, I wanted to focus very much on nurturing the baby, making a cozy, friendly environment and I experienced the hospital environment as something alien to me.

Anna:

Right, right. I can totally relate to you because I was a teacher of the deaf and I know you were a French teacher. We're very accustomed to a classroom setting. The hospital is not anything like a classroom setting and it is alien. I would agree with you. I think our husbands, who are both much more scientific, maybe didn't have the same feeling that we did. I know my husband didn't because he was a nurse. So being in a hospital for him was not as traumatic as it was for me. And I think maybe you experienced the same kind of thing.

Helen:

Yeah, yeah, it's true . My husband works in a hospital. He was quite comfortable with being there. Um , I mean obviously he didn't want to be there. Obviously, it was traumatic for different reasons, but he did feel kind of on his home territory. Whereas for me, it wasn't even necessarily that I had experienced a different work environment. It was that basically I just wanted to be at home.

Anna:

Well, I think as moms, and this was your first child, so I can't even imagine this happening to my first child. At least I had been a mother when I had Alex, who was my second child. So I knew what it was like to be a mother. I knew what it was like to bond with my baby. All of those things that you dream about, that you read about. For me, it took me a long time to be able to get pregnant and have my children. It was five years before we had a baby, and we had been trying for a long time and were very concerned that we had not gotten pregnant yet. With Alex it was different because I had already had a baby. I knew how to bond with my baby, but I knew something was wrong and you knew something was wrong. So then going into the hospital, it's like our worst fears imagined because we already knew in our hearts that something was wrong. But everybody kept telling us, "Oh no, no, they're fine, they're fine." And we wanted to believe that. But being in a hospital, you're kind of slapped in the face with, "No, you're right. Something really is wrong."

Helen:

Yes. Yeah. I mean, I think it's very common from what I understand for new parents to be anxious about their babies. And it is that idea that your worst fear has come true. Um , and you're going through a period of rapid adjustment because the reality in front of you is there's a complete mismatch between the reality that you're living and the reality that you've imagined. And somehow you've got to close the gap. Coupled with that, you're probably not sleeping, so that has an impact. And fortunately, things have changed an awful lot now. But I remember expressing milk in a toilet. I was too shy at the time to ask where there was a facility to do that. And um , I know it's hard to believe now. Now I can't imagine where I was then -- as a young mother. But it was when Alasdair was first admitted, he was in the local hospital and it was in the emergency room and I knew I needed to express milk . I asked to borrow a pump , so I was given a pump to borrow, but I didn't know where to go with it. So I remember going into the toilet and it felt, it just felt so sad. It felt so lonely and yeah, just extremely isolating. Not to mention unhygienic.

Anna:

Well , yeah, I was lucky when I asked for a pump like you did, because I had been nursing Alex, we had a room. They had a pumping room that you went into. But I remember going in there the first time and I was always used to nursing my baby. I had never used a pump for Alex. I used to pump once or twice after I needed to for Joey, but I didn't like pumping. It's not very comfortable and since I was a stay-at-home mom, I didn't really have to, but I remember the first time I pumped just weeping because I was used to the smell of the baby. Now I had brought a blanket and I was sniffing the blanket to try and help let my milk let down so that I could pump successfully and tears were just streaming down my face because I wasn't supposed to be pumping. I was supposed to be nursing my baby and it is a very isolating feeling and I find it odd that we went through this, Helen, and nobody said to us, "We really think you should see a counselor." Don't you find it strange that nobody really felt the need to tell us that it would be okay for us to get emotional support for what we were going through?

Helen:

Yes. I really hope now that things have changed a little bit, but yes I do find it strange. I know I felt extremely anxious and I remember looking at the notes that had been written for Alasdair and there were notes in the margin that had been written by hospital staff that said, 'Mother, extremely anxious.' Also, 'Mother hearing-impaired,' not hard-of-hearing, mother hearing-impaired and 'Mother very worried' and notes like that and I couldn't believe they were about me.

Anna:

And yet they hadn't offered you help, but it doesn't surprise me that they put those notes in there because that would help anybody else coming to see the child that they would know, oh, well, the mother is anxious -- if she acts anxious with me, it's not that she doesn't trust me, it's that she's anxious, but why didn't they send somebody to help allay your fears? Allay your anxiety? That's what I don't understand because I imagine our babies can feel when we're anxious and really the hospital needs to treat the whole family, not just the baby. I mean of course the baby is of primary importance. However, we're going to be the baby's primary caregivers and if we're in the hospital as much as it sounds like both of us were, we're around the baby and you would think that the medical staff would want to do something to reduce our anxiety. And they don't. So this is for all those people who are listening to my show that we need to do something for those moms because it is extremely anxiety-provoking to be in the hospital, to be facing open-heart surgery with your child , to be facing such an uncertain future. I mean I knew with Joey, my healthy child, that his future was uncertain, but I never thought about his mortality. With Alasdair, with Alexander, we had no choice but to think about their mortality. And that's not normal.

Helen:

No, it's not . It's counter-intuitive and, you know, when you think if anyone brought a needle near my baby, I would want to kill that person.

Anna:

Sure. To protect your baby.

Helen:

And yet, all the time when you're in the hospital environment, you're having to rationalize this fierce instinct to protect your child.

Anna:

Right?

Helen:

And tell yourself all the time, 'But actually in this situation, this is what needs to be done. In this situation, this is what's got to happen.' That's going to produce anxiety.

Anna:

Yeah. Yeah. I think we experience a lot of trauma as mothers and I don't really think that it's addressed in a healthy manner for us. Instead we're made to feel over-protective or they're writing notes about us being anxious in their reports to one another and we don't even know about it. So what do you think has been the most challenging situation that you have faced as a heart mom?

Helen:

What do I find the most challenging? Because there's quite a lot of chatter , right? So I mean I definitely, view the initial emergency was a big challenge. When Alasdair was around seven, he was diagnosed with protein-losing enteropathy in addition to his heart condition. So yet again, we found ourselves in the consultant's room having that talk about his mortality. So that kind of triggered a lot of the anxiety that I'd had previously. And that was definitely a really big challenge. And then we were back into the situation of looking for support because although it's a known side effect of the Fontan, PLE is relatively uncommon. So we were then back into looking for support for him. That was very difficult

Home2night4ever:

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.

HUG Message:

eart 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 pertaining 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:

You were telling me, yesterday where we got together, that you took part in a research study at your local hospital. Can you talk to me a little bit about what that program was?

Helen:

Yeah. In 2017, I participated in a parent public involvement and engagement focus group and that was up in London. It's part of a collaboration between Echo, the parent group that I mentioned before, and South Bank University in London. And so it was basically a group of parents who got together to share their experiences and the group is facilitated by a researcher and it was recorded and at the same time my daughter Ellie went with me, as well, and she took part in some activities for siblings. And this research project is ongoing so it's still active now and it aims to look at the impact of children's heart issues on the wider family and what can be done to help.

Anna:

Right. Which is exactly what we're talking about as far as the mental health of parents, but also that is a whole other area that needs to be examined and that is what is it like to be the sibling of somebody who is having multiple surgeries or having to go to the doctor regularly or, heaven help us, developing protein-losing enteropathy or some other kind of illness. We know that plastic bronchitis is another rare, and yet it happens, circumstance. Arrhythmias are not so rare. A lot of our Fontaners end up developing arrhythmias . It might need a pacemaker or I might need to have ablations. And so just because you have the Norwood, the Fontan, a bi-directional Glenn, that doesn't mean it's it. This is an ongoing, lifelong condition and there will be situations in the future that the siblings will have to deal with as well. And I think that's very unusual, don't you?

Helen:

Yes, to be honest, I don't know what went on in the siblings group, which is kind of a good thing because we were in different areas, but certainly when we were on our way home and Ellie and I were talking about it, I could tell that she was quite animated. There's a sense of relief at having met other people who were in her situation and also had fun with them.

Anna:

Right. Which I think is lovely. I did an entire season talking with siblings. And I loved those 13 shows that I did were so fabulous for me to get a chance to talk to the siblings. What was it like being raised with somebody who had a heart defect? And I was really touched by how sensitive, how empathetic these siblings were. Not that it was easy to be raised with a sibling with a heart defect and they had to think about their sibling's mortality, or some of them at least were confronted with their sibling's mortality, which again, is not a typical situation for most siblings. But I do think that there's value to them knowing other siblings who are in that same circumstance.

Helen:

Yeah. Absolutely. Yeah.

Anna:

Yeah. What do you think that you've learned as a long time heart, Mom? Which, it feels good to say that we're "longtime heart moms"! What do you think that you've learned that you would like to share with somebody new?

Helen:

I think I've learned that it's okay that I was worried; it's okay to be anxious. It was okay to tell other people that I felt like that because for a long time I didn't really say that. And I've realized it's okay to be emotional in front of other people. It's only recently that I've really properly understood the importance, both for me and for the people around me, of looking after myself and paying attention to my own wellbeing. Um , so yeah , I think that that would be perhaps the most important thing that I would say to other people, which is not only, is it okay to say that you're worried about things, but it's okay to look after yourself,

Anna:

Right. I think if I were to tell a newly-diagnosed heart mom anything, it would be, yeah, give yourself a break. You don't even have to make it a date. Even if you just want to have somebody in the house to watch the baby so you can go take a bubble bath or so you can just have a nap. Because, like you were saying, there's so much anxiety. I've had trouble sleeping at night. Did you sometimes have trouble sleeping?

Helen:

Yes, but actually I've just been reminded of a wonderful thing that your husband said to me today, which was a really good point. We were talking about this issue and he said how on a plane they tell you to pull down your own oxygen mask first before you try and look after somebody else. And it's very easy to give that advice. And of course I'm 20 years on now and as a younger parent with an ill baby, I was a lot more vulnerable than I feel now. But I still think that was excellent advice and it was a really good image because it's one that we're all familiar with. It's very clear. It's an important thing.

Anna:

Yeah, but I think you're so right that we need to address our own health, as well, because if we're healthier, and I'm talking about mental and emotional health, and maybe that's through reaching out. Now, there's so many more avenues on the internet than there were 20 years ago for me, 25 because my son is now 25. And we didn't even get online until he was two years old. We didn't even have Internet. So for those newly-diagnosed parents who are in their twenties right now, you probably don't even remember this, but it was very isolating back then because we didn't even have online services like you do now. But I would say, yes, you need to see after your own mental health and that . Also, there's nothing wrong with counseling. Seeing a psychologist or a psychiatrist or even doing group therapy. It sounds like Echo is involved with helping families. Do you want to talk a little bit more about Echo and what they do here in the U K?

Helen:

Well, now of course it's a lot more developed as an organization than it was and there are all kinds of things going on. So activities and groups that children can join in with. And young people, again, it's often based on just having fun together, not necessarily sharing big things, but just having a nice time and treating yourself. So yeah, as I say that there's quite a lot more that can be things that can be joined in with than there were.

Anna:

That makes me feel so old, Helen! You know what, how awesome that nowadays we can say, 'Wait a minute' And the thing that's popping into my head is when my son was young, we didn't have any of that.

Helen:

No. And the other organization , that helped me a lot, but I didn't get in touch with them until later on because I didn't know about them was Little Hearts Matter. And they have helped hugely. They helped with doing applications for Alasdair's, DLA (dispensary living allowance). They helped with his transition between primary and secondary school and information for teachers. And again, there are networks and you can ring up and talk to somebody, which was really important.

Anna:

They also have a lovely website which has a lot of information as well.

Helen:

Yes.

Anna:

And now we have that. We have those websites that we can go to. Another one that's really good and, in fact the organization that Jane Hunt and I started, which was called Milagros in Central Texas has now been taken over by Mended Little Hearts and Mended Little Hearts is all over the United States and it sounds like they do a lot of what you're talking about and they also help bereaved parents. They have a special program for bereaved parents, which I think is so necessary because that seems to almost be a taboo subject. They don't want to talk about what happens if one of those children pass away and we know, unfortunately, there's a disproportionate percentage of our children who are going to not make it to that next birthday. Those people need support probably even more than we do.

Helen:

Yeah. Yes. And another side of that also is understanding when you are able to dip into knowledge about other people's situations and for your own sake you need to take a bit of time out and that has to be up to the individual. That has to be something that the individual decides in terms of what's right for them. Because there are times when we're able to be with and support others and times when we're not. And that's quite normal. Quite fine.

Anna:

I think it's easier for me now that Alex is 25 then it was when he was little because I think it was still so fresh for me. Now it's not quite so fresh. How do you feel about that? Do you , it's a little easier for you to be supportive of other parents now that Alasdair's in the university?

Helen:

Yes. It's certainly a bit more distant in the sense that he's been able to take on, I guess some of the issues that we were holding for him. So there's a lot of information, you know? So it's been quite a big journey for him going into adulthood. Gradually he's found out more about his condition and taken on his management of his own medical treatment, et cetera , and also learning to become his own advocate and realizing sometimes that you have to fight for the treatment that you think is right for you , and fight for the system to meet your needs. So yes, in some ways him being able to take that on is a relief to me and takes a little bit of weight out of my relationship with him so that it can be perhaps a little bit easier.

Anna:

Right. I feel like now I have more of an adult-adult relationship with Alexander, whereas before I very much was the mama tiger taking care of Alex and protecting him and trying to raise him to adulthood. Now that he's made it to adulthood, he goes to his appointments without me, he's taken care of himself and taking care of what needs to be done. I do feel a little bit of a sense of relief, but I think as far as like providing a support, it's a little bit easier too because I feel like we have a success story. We really are so lucky that he's made it this far when we were told that he probably wouldn't.

Helen:

Oh yes. Yes .

Anna:

And for you, and even more so because with the PLE, that must have been a huge scare for you.

Helen:

Yes. I mean at the moment Alasdair's PLE is in remission so obviously we don't know what the future holds. But yes, there is a sense of being just for however long, we don't know how long, but being able to put down that burden and just kind of breathe a little live a little.

Anna:

Yes, I love it. I love it. This time has just completely flown by. I have been waiting for six years to have you on my show because I knew I wanted you on my show early and I was lucky enough to get David on the show. But with you being hearing impaired, working on Skype was not going to work. So I'm so happy that we could meet face-to-face and actually do this. So thank you so much for coming on the program today, Helen.

Helen:

Oh, thank you. Yeah. Really enjoyed it.

Anna:

It has been so much fun. So that does conclude this episode of Heart to Heart with Anna. Thanks for listening today, my friends. Please consider becoming a Patron of our program by visiting www.patreon.com/hearttoheart. And remember my friends, you are not alone.

Conclusion:

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. [inaudible] .