Making a Difference Thanks to Gabe

Anita Moreno Marcelo, as the mother of a son with a congenital heart defect (CHD), penned a poem that touched many lives in the CHD community. In this episode of "Heart to Heart with Anna" she talks about why she wrote the poem entitled "The Presence of Greatness," what it meant to her and why she feels it's important for us to talk about how adults with CHDs are treated in medical settings and what we, as a community, can do to improve our Heart Warriors' medical experiences.

Transcript

Anita Marcelo: 0:00

He was afraid to go to the hospital. He didn't want to go to the hospital. So in delaying care, what does that mean for our families that are out there?

Anna Jaworski: 0:12

Welcome to Heart to Heart with Anna. I am Anna Jaworski and the host of this program. This is the first episode of Season 13 and I'm so excited because we actually have a live studio audience. This is the first time for us to do this and we are recording an episode called Making a Difference Thanks to Gabe. Sometimes someone will write something so compelling that you simply have to respond. My next guest wrote such a piece on October 20th, 2018 and the response has spanned page after page after page on Facebook. She struck a chord and I think you'll see why in a moment. Anita Moreno Marcelo, is mom to Jaime Alejandro Marcelo, a musician and composer and Gabriel Louis Marcelo who passed away in 2017 at age 27 from complications associated with his single ventricle heart. Anita is also mom to, stepdaughters, Gina and Lisa and a grandmother to Shayla, Dawson and Hugo. For the past 30 years she has worked in business and currently owns a business doing vehicle licensing in Woodinville, Washington. She has been actively involved in online support groups for congenital heart defects since 1995, which has helped her to gain the information and support to advocate for her son Gabe's changing medical needs throughout his childhood and adulthood. On a personal note, I know Anita and have been friends with her for 20 years because she was a contributor to a book I put together called"The Heart of a Mother." This show is going to focus on how all of us in the congenital heart defect, or CHD, community can make a difference for Heart Warriors because of what Anita learned from being Gabe's mother. In the first segment we'll go over the extraordinary post that had people all over the world talking about the topic of her piece and in the second segment we'll get some advice from Anita on how we in the heart world can do something so other people won't have to suffer like Gabe and his family did. A select group of VIP Heart to Heart with Anna isteners has been invited to be part of our studio audience and we'll continue the conversation with Anita and our audience to the conclusion of this show. Anita, welcome to Heart to Heart with Anna.

Anita Marcelo: 2:29

Thank you for having me. This is what I posted on Facebook. The name of my poem is called The Presence of Greatness. You, Dr. Specialist, had no idea who you were treating, who you were minimizing with your offhand, shortsighted, cursory diagnosis. You did not see him. You probably never gave him another thought. You were so close to him and you did not notice the strength, the determination, the pain, the suffering, the hopeless end that was in store. You simply cut him off, dismissed this man as less than. You, ER nurse with absolutes, which he was going to complicate with his needs, his issues, his complexity. You did not realize who you were so angry at. You did not get what an opportunity was missed. You saw him as another difficult patient. The anxiety he had to overcome just to wheel into your ER, his very own personal story, that did not fit neatly into your plan. You did not know that a kind act, the gentle touch from you would be a miracle for him. You missed your chance and left in anger, non-compliant. You, Doctor adult cardiologist really blew it. You, so full of your high self image looked down on this very special man. You decided that his pain was a ruse. You threw away a chance to meet and really know the beautiful chrysalis, breaking open, miracle and blessing to witness. Your calculation, your haughty rebuke, such a weapon. This man coming to you for help struck down by your accusations. Drug Seeker. You floor nurse, you had so many opportunities to be the true healer, adding only insult, suspicions, condescension. How can that be? How do you do your job that way? You were in the presence of a brave and fearful man. He did not want to be there. He did not want your disregard for him as human and in need. Judgment was not yours to deliver. A cold blanket on shivering soul. You could have had the special touch that brings out a smile that will melt you. A shy dimple in one cheek and eyes that reached deep, deep inside, giving back with such direct appreciation and love, linger. You, all the other doctors, nurses, technicians, interns, specialists. You did listen. You wanted to know. You asked him what he needed, what it was like for him to be in that body. You sat close, touched lovingly, shared so many, many laughs, hugged and cried with him, saw the hope he clung to, fist bumped away anxiety, witnessed the pain he spoke of, gave the aid and comfort he was owed. You were his army, his family. He had me bring you gifts, chocolates, lots of chocolates from the man who loved you back in every kindness. You diminished the memory of the past. Righteous.

Anna Jaworski: 5:43

Wow. That poem is by my very special friend, Anita Moreno Marcelo. Welcome to Heart to Heart with Anna, Anita.

Anita M Marcelo: 5:51

Thank you.

Anna Jaworski: 5:52

Okay. I'm trying not to cry already.(laughing) Wow. I mean, that poem got to me the first time I saw it. It gets to me every time I read it, but hearing you read it is just even more powerful. So let's talk about why you wrote that poem. It's filled with so many emotions. I found myself chuckling and smiling and crying all through that poem. It's just such a roller coaster ride. What was the most important message you wanted to impart with that piece?

Anita M Marcelo: 6:24

Well, the title of the poem is In the Presence of Greatness and it doesn't pertain to Gabe as an individual. It pertains to the sick patient or the patient fighting a disease or pain or suffering and the medical professional's ability to be just the magic that comes from looking in somebody's eyes, from connecting with them, from listening to them, from really relating to them. As you can see in the last part of the poem that is the greatness. It was his part of his life. These people played a critical, critical role in his life and it turned out to be the end of his life. I didn't know that the last year. We thought we had years to go and so you're going through all the steps of dealing with a medical circumstances and you're reacting to things based on what is everyday life and as I saw Gabe spiraling down, we were just trying to get him back to where he was-- back to baseline and there was one thing after another after another, but we were unaware technically of what heart failure really looks like in a young adult. When an older person who's dying of a heart failure, their body is pretty much, it's an aged body. This is a young healthy body that is not getting what it needs from itself and that is a painful procedure that we're not aware of and I don't think even a lot of medical people are really aware of it. So you have the experience that we can all relate to what it looks like for a cancer patient whose dying, what that looks like, with some of the symptoms and the horrible things they go through. But people, even the medical staff that we dealt with just didn't get what Gabe was going through. It surprised me. It took me by surprise and so this poem just came the night before I posted it. I just wrote it. It just had been mulling in my head, how do I get rid of this really difficult feeling I have in my sense that they're not hearing us. I needed to put that out there.

Anna Jaworski: 8:40

You did a beautiful job of doing that. That poem definitely makes me feel that those people just weren't listening. They had preconceived notions of what was going on and I think that's what that poem speaks to. Through the years, I've come to know a lot of adults in the CHD community. How did you feel about the outpouring of emotions that your piece stirred up in the community? Because I printed it out, Anita, it was 26 pages long. All of the responses that you got to that poem. Amazing.

Anita M Marcelo: 9:15

Well, and we realize as parents of children who have had many different experiences that there are many different experiences going on right now, so our kids all have different hearts. We all have different experiences, there's different outcomes. Everybody's different, but the one thing that I got out of that list of the comments that came, people have been supportive of me, loving toward me. I appreciate all that. But the idea that people could be even reluctant to go to a local ER, that needs to be addressed. That's really, really, really huge. We fought that with Gabe and going from children's hospital to an adult hospital, he really got to know the ACHD clinic and felt good there, but the rest of the hospital could fall short very easily and just didn't get what this was like for him and he was afraid to go to the hospital. He didn't want to go to the hospital. So in delaying care, what does that mean for our families that are out there, the stress, the worry, the potential for a negative outcome because we're not getting to get to care. We're not getting heard or understood. Is there some way we can really make that change?

Anna Jaworski: 10:37

Oh my gosh, I really hope there is Anita because this is the one thing I hear people saying over and over again, especially what you talked about with the fear, the fear of going to the ER and having to explain all over again about a really complicated course. I mean, it's not even just a complicated birth by the time you're an adult, you're way past the birth process. However, what you were born with matters and all of the surgeries you've had subsequently matter and what you've been dealing with the last two months, two years matter, and having to go through that all over again with new people. It's got to be depressing.

Anita M Marcelo: 11:16

Well, our partnership that really affected Gabes ability and mine as someone who loved him and was caring for him was the palliative care doctors that we encountered and who worked with him and for him. I want to say there were like soldiers. They stood up to the rest of the doctors and said, this is what you're going to do for this young man. This is how you're going to handle this. This is what he needs from you. So they were supportive of him and they spoke for him. They actually put things into writing. If you're an inpatient, this is what we will require the hospital to do. It's part of his chart. It was amazing and they incorporated the family, the other medical staff that he dealt with, his own personal therapist, all these people in this initial conference, but they listened to Gabe and I mean once he started saying what he felt, what he wanted, what his thoughts were, they put this into action and I have to say that was a good move on our part. That did help to manage a lot of the stressful things that had occurred.

HomeTonight4Eve: 12:52

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: 13:01

"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.

Anna Jaworski: 13:46

Anita before the break, you were talking about how there were certain people in the hospital who were more helpful than others. Did you go to all of Gabes appointments with him?

Anita M Marcelo: 14:00

Well, you gotta understand, I had to. Gabe had a lot of neurological issues that prevented him from driving. He didn't have the ability to be independent. He lived at home. He could go suddenly blind and he just had these seizure elements that were enough of a problem that it was better that he just stayed home. I mean his big dream was to live in an apartment. I wanted that to happen for him so badly and had looked into housing for disabled adults and, everything, but I knew that if that apartment wasn't close by, I would be there every single day. I would have to be there or he would have to have someone who could live with him because he truly had some neurological issues that were an override to the heart condition. So...

Anna Jaworski: 14:59

Yeah, I've actually done a couple of programs on dealing with the neurological issues and in some cases that becomes even more handicapping than the heart condition.

Anita Marcelo: 15:13

Yes.

: 15:14

And definitely more concerning.

Anita Marcelo: 15:15

Yeah, it's lifelong. Yeah.

Anna Jaworski: 15:16

Well both of them are lifelong. But yeah, that really adds a whole new complication into what is going on. Yeah. I feel fortunate that my son goes to his appointments alone because he's super independent and doesn't want me to overshadow him. I get that, but he does come back and he gives me any paperwork.

Anita Marcelo: 15:37

It is a cause for celebration.

Anna Jaworski: 15:40

It is a cause for celebration. Absolutely. In fact, the minute he turned 18, it was like, okay, now I've got this mom, you've been raising me all these years. I can do this and it took me aback because I was the record keeper. I was the one who was used to being in charge and I kind of voiced those concerns and he said,"Mom, don't worry, I'll still let you be the record keeper." So he brings all of his paperwork, you know, anytime he gets any kind of paperwork, he'll bring it to me and we usually will have lunch or we sit down after his appointment and he'll say"So this is what happened." So it's not like I'm out of the loop, thank heavens, because that would really drive me crazy. But I do worry a little bit about what's going to happen if he goes and people treat him like what you wrote about in your poem and what I hear about from so many other friends who have adults with congenital heart defects.

Anita M Marcelo: 16:28

Yeah. Well Gabe would be in the driver's seat as far as talking to the doctors and dealing with them, but he would ask me to back him up on history information and all that and to be there to listen and also consult with him. But would point me and he'd say,"My mom is my advocate, and just, you know, like don't mess with me."

Anna Jaworski: 16:51

See that's exactly what I've told Alex, that it helps to have an advocate to go with you and he's not at the point right now where he wants that, but it's good to know that Gabe saw that. He didn't see you as being nosy or anything that you were his advocate. Plus I told Alex it helps to have another set of ears, especially when people are talking about things that are really complicated. You start talking about liver issues or involvement of organs or possibly needing another catheterization. They can start throwing a lot of jargon at you that when you're not using it every day, it can be intimidating. I haven't been able to convince him.

Anita M Marcelo: 17:27

His Dad said that he would watch Gabes face and if the doctor was talking about anything real specific that Gabe would watch me. He'd watch my reaction to what the doctor would say. He wouldn't watch the doctor, he would watch me.

Anna Jaworski: 17:42

Wow.

Anita Marcelo: 17:43

I didn't really pick up on that, but...

Anna Jaworski: 17:45

That's funny that his dad picked up on that.

Anita Marcelo: 17:52

He wanted to know how I was going to react.

Anna Jaworski: 17:53

Wow. Well Anita, I've had people reach out to me who have adult children who are in pain and awaiting difficult procedures and it sounds to me like that was Gabes experience for a long time and I've actually put some of them in touch with you believing that you might be able to give them some valuable advice and I was wondering could you share some of that advice with my listeners?

Anita M Marcelo: 18:18

Yes. Like I said, we were really in the dark as to what to expect from what turned out to be Gabes resistant to diuretics. Apparently they just weren't doing the job. He needed stronger and stronger and more IV treatments and all that. And we really didn't know what heart failure was going to do to him or how it was going to proceed. But eventually we were put in touch with home health care people who came to the house. There was respiratory therapist, Gabe was on oxygen some of the time, and physical therapists and home health care nurses. There were home health people who would come because I had to work. My mother had died just 10 months before Gabe did and she had been home with him all the time and now I had to be at work and Gabe was home alone and he had medications that made him extremely nauseous and he had this tiny little pill he had to open and it was hard to get open and I'd just be at work thinking, oh my gosh, what if he wakes up and he needs that pill and it's in this little tiny foil packet, so they had this home health person who could come and be here like four hours a day during my work day, which was good in the morning when he would first get up and all that and they could make him breakfast. And there were options like that, but the palliative care doctors, I felt were really, really instrumental in helping us to focus on where we were at, what he needed and actually she put him in the hospital at one point when we came in for an appointment and another time she stopped the appointment and took care of his hands so his skin was dying, his hands, his.....

Anna Jaworski: 20:07

Wow.

Anita M Marcelo: 20:08

His liver, his kidneys, his lungs, everything, everything inside was taking a big toll and so there were all kinds of problems that just kept coming up, and she was a great person to just kind of put it in perspective for us, tell us what was going to happen and kind of how. And that was helpful without being painful and sad and also helped to kind of line up where he wasn't responsible for this. He felt because he was gaining so much weight that he was overeating, which I knew he wasn't because I was feeding him so he couldn't eat as much he ever had and he could gain 12 pounds in a week and then you can't breathe. You can't breathe, and so the palliative care doctor was another doctor who was trying to line up a process where Gabe could maybe go in once a week for an IV treatment. Just to avoid having to be in the hospital. It was a movement toward really getting some things under control and trying to find the best way to get him in the best shape possible. So lots of those kinds of issues that came up with the various people we met along the way. And so those are my recommendations, is to find those local resources. The home health care people really got what we were dealing with. They talked to us about putting in a stair lift and also got us a better wheelchair for Gabe because the one we had was so bad it was really hard for me to push him. It made all the difference in the world. So these are all things for our specific journey. Everybody has their own different needs, but I say we all need to really go back to our primary doctor and talk to them about what other resources are out there and to really be direct about how huge an impact this can be, because sometimes we've just been doing this for so long and our goal is just be hopeful and positive and looking for our kids to improve.

Anna Jaworski: 22:16

Get better.

Anita M Marcelo: 22:16

That was our whole goal all his life. I didn't know how to make his life easier. How to find solutions for the pain and suffering of what he was experiencing and I really kind of just had to blindly find my way.

BHP Promo: 22:32

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.

Promo: 23:11

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 Jaworski: 23:29

Well, here we are. This is the first time for a Heart to Heart with Anna to have a live studio audience and this is really exciting. Thank you, Anita for such a powerful show. I mean, wow. I just feel like there is so much that we can from your experience with Gabe and you're so articulate in your poetry and in your interview with me. I really, really appreciate you coming on the show today.

Anita M Marcelo: 23:54

Oh, you're welcome. Thank you for having me.

Anna Jaworski: 23:57

First, let's go ahead and talk with Michael Liben. Many of you know Michael Liben as the host of Heart to Heart with Michael. He is also my go to guy when I have technical problems with my show. And he is also a longtime friend and I believe Michael has known you, Anita, for about as long as I've known you because we were all in PD Heart together. So Michael wanted to share his experience with his daughter Liel, and I'm going to turn it over to you, Michael.

Michael LIeben: 24:28

Thank you. First of all, I just want to say that your story is very real to a lot of people and how so much of it is the same for all of us and so much of it is different and that we're all going through our own versions of the same thing. And thank you very much for sharing that with us because it's really important that everybody gets their story out. I want to go back a little bit to the beginning when you were talking about advice for people and you were talking about how difficult it was whenever you went into the hospital to start all over again in telling the story. What we did, and there were a number of occasions when Liel was hospitalized for things that had nothing to do with the heart and we'd have to start all over again. I prepared a sheet, a one page, short medical history written by a father who's not a medical expert. This is what she has as far as we know and these are the medications that she's allowed to have and these are medications that she's not allowed to have. I literally pinned it to her chest when we went in there and she was lying there in the hospital and all the doctors and all the students, all the interns, everybody read it and were all literally on the same page and they all had appropriate questions and very quickly we all got into taking care of her with what we had and not having to teach from the beginning and that's the best piece of advice that I would have for anybody going through something like that.

Anna Jaworski: 25:38

Yeah, I think that's excellent advice and in fact this is something that the Adult Congenital Heart Association has recognized is needed and if you go to the ACHA website, you can even find a... I believe it's online, but I know I've seen at conferences where they have these little books that look like a passport almost and it's an opportunity for you to put down all that information that you just talked about so you can just hand that to the medical team when you go in and you don't have to talk about it like what you just said, Michael. I think that's really good advice. Anita, did you have anything like that? For Gabe?

Anita M Marcelo: 26:16

Fortunately most of the hospital medical personnel we dealt with could access his chart.

Anna Jaworski: 26:24

Right.

Anita Marcelo: 26:25

But, it would've been a nice shortcut, especially when the problem is that they just don't get that you can't put oxygen on someone and have their saturations go up from out of the low eighties or high seventies into a normal range. This is not going to happen.

Anna Jaworski: 26:44

Right.

Anita Marcelo: 26:45

There are just issues with understanding what a patient like Gabe has going on.

Anna Jaworski: 26:54

When Alex was going off to college, because he decided to go from Texas where we live all the way to New York City, I made a flash drive that had his most recent echo, his notes from his last surgery and a medical history that was in PDF form and all of that was on a flash drive and I actually took it physically to the cardiologist that I found in New York City that he would go to if he had any problems and I handed that flash drive to them. But I had a copy of the flash drive for Alex that he could keep with him in case he ever needed it. That could help somebody who is in an emergency room or in an outpatient walk in clinic to get a snapshot real quickly without you having to go through everything. I think that's great advice. So now I'm going to welcome Chris Atherton and Chris is mother to Becca and Chris has some stories that she would like to share with us as well. Welcome Chris.

Chris Atherton: 27:56

Thank you, Anna. What I would like to ask, actually, Anita is about palliative care. When did palliative care become involved in Gabes care? Because with Becca they didn't become involved until maybe 10 months before she passed away. Not even that long. I'm kind of curious when it started for Gabe.

Anita M Marcelo: 28:16

Well, it started about 10 months before he passed away, to be quite honest. The conference that we had was held right in the ACHD clinic and it was a group of about a dozen people. It was pretty big and one of the things that it lends itself to is the conference yielded this document from the palliative care doctor that was going directly to the hospitalization that Gabe had in. One of the things they said is that you cannot stop certain medications that had happened at other hospitalizations and the problems that we encountered was a very clear set of directions for him to proceed, but it didn't come into play really until that last 10 month period. We could have used it years and years before that. I was just dumbstruck by how helpful it was, it was amazing.

Anna Jaworski: 29:14

This is something that I don't understand when you're looking at a team approach. When I was first told that my son had Hypoplastic Left Heart Syndrome way back 24 years ago, they told me that he needed a palliative surgery and I'll be honest with you, I had to go to a dictionary to look up what that meant because I wasn't sure what that meant and then I came to realize that what that meant was he would not be"fixed," that they were going to do the best they could, but that he would never be fixed, so why don't we have a palliative care team from the get go?

Anita M Marcelo: 29:56

Some other issues with the palliative care really coming into play and I think that it doesn't have to be so far out like it could be earlier on where they could really help you bring together all these other medical personnel. They just have a very direct way of cutting down to what's needed for this patient. Figuring out what this patient could use. So I don't know why it's not a ongoing part of their care.

Anna Jaworski: 30:31

Chris, what was Becca's original diagnosis?

Chris Atherton: 30:34

Tetralogy of Fallot, Pulmonary Atresia, Pulmonary Hypertension, and then a bunch of all different kinds of arrhythmias and she ended up with a pacemaker defibrillator, those kinds of things. Pulmonary Hypertension was the real nasty piece of this whole diagnosis.

Anna Jaworski: 30:50

Wow. Yeah. Now, was she born with Pulmonary Hypertension or did that develop over time due to the complexity of her heart defects.

Chris Atherton: 30:58

She had Hypoplastic Pulmonary arteries, so they were tiny, tiny. So she was born with pulmonary hypertension.

Anna Jaworski: 31:06

Okay, okay. Yeah. Wow. That complicates things right away because now we're not just dealing with heart. We're dealing with lungs too.

Chris Atherton: 31:14

Right. And I do think palliative care probably would have been a good thing to have from the time she was very small to try to make things as good as possible and to be part of the team so everybody knew each other when things got pretty tough. I think that would have been a really good thing.

Anita Marcelo: 31:34

I agree.

Anna Jaworski: 31:36

Yeah. So what can we do as a community to try and let people know that this is something that's important and Frank, I might want you to weigh in here, for those of you who haven't heard my husband before, Frank Jaworski is a nurse and he's been a nurse for over 20 years. The first thing that comes to my mind is the reason why palliative care may not be employed from the get go, which I think a kid with a critical congenital heart defect that is not going to have that heart fixed. I think the palliative care team should be part of the overall team that looks at our kids. The thing that pops into my mind, Frank, is, well, we can't afford that. Insurance won't pay for that. Can you speak to that?

Frank Jaworski: 32:20

I'm not sure if the insurance is the biggest issue as your previous question, palliative surgery versus palliative care. The word has the same meaning, but it doesn't apply the same way because a palliative surgery is intended to have the patient live as long as possible, but a palliative care team is associated with the idea of end of life care. And if you identify everybody may need end of life care early on, you're going to need more palliative care teams, more than the hospital can afford. Because a lot of patients who come into the hospital, adults and children both could be in that market later on. The critical question I guess is decide exactly what point you bring them in.

Anna Jaworski: 32:59

So it seems like for both Anita and for Chris, I guess the team appropriately picked up on when those young adults would need care about a little bit less than a year out. Is there some way, Frank, that the medical professionals really can tell, okay, we've got probably less than a year and that's when they decide to invite them to come on board?

Frank Jaworski: 33:22

Well that'd be great, but no, there is no way you can tell for sure. We were told Alex had a 5% chance of surviving his first surgery, which obviously we knew he had a small likelihood of surviving very long at all and now he's 24. So no.

Anna Jaworski: 33:34

Yeah, but you know, when they told us that, I wonder why they didn't have palliative care come and talk to us. They didn't.

Frank Jaworski: 33:42

Well probably because palliative care implies a whole bunch of people involved and techniques involved. Sometimes it's outpatient care, sometimes it's an end of life facility as it were, and if Alex had had a serious complication, there would've been no end of life care. He probably would have died in the operating room or in the ICU shortly afterwards. So palliative care also depends on what the prognosis is in terms of how the patients going to progress. If you suspect it's going to be a sudden catastrophic problem then palliative care has no place. Does that makes sense?

Anna Jaworski: 34:12

Yeah, it does. Unfortunately it does make sense darn it. I want there to be a quick, clear and easy way for us to know when to get people involved. So Chris, it seems to me that Becca was born with multiple organ complications. She had heart problems and she also had lung complications because of the pulmonary hypertension. So she was really a very complicated case. Even more so than I think Gabe or Alex were. When do you think it would have been appropriate for you to meet a palliative care team?

Chris Atherton: 34:44

I think that's a good question because she did have crisis on and off through her life. Maybe at one of the first crisis, maybe when she was 13 months old and ended up on ECMO, which wasn't done as often as it is now by any means way back then. So maybe that would have been a good time to have a team member. I just think it's important to have a team together and just keep seeing the child to the adult as they move up who know that person and I think that makes a difference. I really do. I mean, part of this conversation though has to do with are these children, when they become adults going to be seen in a place that are going to know who they are and what their history is and what their outcome looks like and can they be treated well, and I think that becomes an issue, too in this whole picture here.

Anna Jaworski: 35:31

Oh, I agree. A hundred percent. What about when they travel? I'm a nervous wreck every time Alex wants to travel and of course, he wanted to do an internship in Germany. I felt that I had to allow him to do that because he had overcome so many odds to be where he was. That for me to say no would have kind of negated all the work that all the doctors and all of us had done for so many years, including Alex, of course, and so of course we let him go, but I made him take his little flash drive with him.

Chris Atherton: 36:02

We want them to live so they can live and that's the thing that we have to do. Yeah, I do think even at home, Becca, a couple of times had stomach issues and so we went up the street to a well known hospital in town because it wasn't her heart, we didn't think, and they did not know what to do with her and said she did not have heart failure and then let us go home and instead just a stomach thing. Well, we ended up at Lucile Packard, which is a Stanford Children's Hospital, both times in very serious heart failure. So part of it depends on if people know, if they listen, if they're overconfident in an ER. They can look at the hard drive but still think they know more than what is being given to them or they don't understand what is being given to them and we found that just right up the street in this hospital that's well known, but they just didn't know about congenital heart defects.

Anita Marcelo: 36:58

Right. And I would like to see our ACHD doctors be at the helm of giving our sons and daughters directions on what they should do. I'm giving them the information that they need and the connections and resources for travel for going anywhere for running afoul of other situations. Just like if you're discharged from the hospital and they say here are the things you need to be aware of, should they come up. It's the same thing for them but on an ongoing basis and on a broader scale and it seems like the doctors themselves, instead of you doing the flash drive, they should be providing the contact information. They should be providing the direct backup for the patient wherever they are, and I don't mean patient because our kids don't want to be patients. You just want to be people out there living, but it is that complicated part of their life that will be impacted by those other situations.

Anna Jaworski: 38:02

Wow. I think that's great advice. I cannot believe how fast the time has gone, everybody. Thank you so much to Anita, to my studio audience, to my producer David Franco and my assistant producer, Michael Liben. I appreciate you all so much. This has been a lot of fun, everybody. We did it! So thank you. We did record our first show with the live studio audience. I think this was a lot of fun. If you would like to be part of the studio audience in the future, then you can join the Heart to Heart with Anna VIP group. That is the group that we'll find out when we are recording some of these shows that we'll have a live studio audience and you can take part. So thanks again Anita, for coming on the show today and sharing your experiences and advice with us. I'm so glad that you had a chance to read your poem because now everybody had a chance not only to read it themselves, but to hear it in your own voice.

Anita Marcelo: 39:02

Thank you.

Anna Jaworski: 39:03

I hope you keep writing. Anita, you really are gifted that way.

Anita Marcelo: 39:07

Thank you.

Anna Jaworski: 39:11

That concludes this episode of Heart to Heart with Anna. Thanks for listening today. Please check out our website HeartsUniteTheGlobe.org for this show and for other shows. Heart to Heart with Michael is also on HeartsUniteTheGlobe.org, and we also have a store. So if you would like a mug to drink tea out of or coffee when you're listening to our show, all you have to do is go to our website, HeartsUniteTheGlobe.org. Go to our store and you can find that tee shirts, hoodies, a whole compendium of products, thanks to our graphic artist Nancy Jensen. Thanks for listening today, friends, and remember you are not alone.

Promo: 39:50

If you've enjoyed listening to this program, please visit our website, HeartsUniteTheGlobe.org and make a contribution. This program 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 educate, 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 CongenitalHeartDefects.com for information about CHD, hospitals that treat CHD survivors, summer camps for CHD families, and much, much more.

Conclusion: 40:35

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.