Title:
Sweet Ella | The Child Heart Warrior

Subtitle:
American Heart Month: Alycia’s family is embracing life with Congenital Heart Defect

Transcript:

Alycia Anderson: Welcome to Pushing Forward with Alycia, a podcast that gives disability a voice. Each week we will explore topics like confidence, ambition, resilience and finding success against all odds. We are creating a collective community that believes that all things are possible for all people.

Open hearts. Clear paths. Let’s go.

Welcome back to Pushing Forward with Alycia. I’m Alycia Anderson. It is Congenital Heart Defect Awareness Week. My family, my twin sister Regina, and her husband, Shane, they are man and wife and I am so happy that they are on to share a little bit about their personal story.

And before we jump in because I have a slew of questions. I saw a quote right before we started and it was from a gentleman named Jeff Hood and it was, “The strongest hearts have the most scars.” And I thought that was pretty amazing.

Regina Weinstein: Oh…

Alycia Anderson: I know.

Regina Weinstein: Tears to my eyes.

Alycia Anderson: Shane Weinstein is my amazing brother-in-law and he is making his debut on the podcast. Shane welcome, a special welcome to you. Thank you two for your time.

Shane Weinstein: Thank you. Thank you, sister.

Alycia Anderson: Yeah, yeah. I think we should start with, if you don’t mind laying down a little framework, can you share a little bit about your personal journey as a mom and dad with congenital heart defect and how that’s entered your life?

Regina Weinstein: Sure, I’ll jump in. It entered our lives almost seven years ago… around seven years ago, Shane and I had been on a very strenuous, exhausting, difficult birth story. Trying our hardest to find that path to family and we were blessed with this pregnancy of our daughter and so excited that it had come to life, finally.

And because, I had some complications and issues with pregnancy prior we had…, I was being monitored very closely. And so, at 12 weeks pregnant, we went in for a fetal echocardiogram, anticipating the quote-unquote news of normal or everything is looking good or we are on track.

And not receiving that news and… that was difficult to accept or hear or acknowledge, or just, I don’t know, just absorb…

Alycia Anderson: What was the news?

Regina Weinstein: The news was our amazing health care providers through UCSF, which have done tremendous work for us, had told us that… [they] brought us into a conference room, sat us down and they clearly had a look on their face like they had something they needed to tell us.

And they told us that our daughter…, we didn’t know she was a girl at the time, but our baby had the diagnosis of tetralogy of fallot, which is a pretty common… commonly known congenital heart defect.

And we didn’t know what that meant. I didn’t even know how to pronounce it. I didn’t know how to say it. I didn’t know how to believe it.

And the first thing I thought was get me out of here. I don’t want to listen to this, and I need a second opinion, but UCSF is a second opinion place. And so, what we did was just take a deep breath and try to get more information.

So it was early in our journey is my point… very very early.

Alycia Anderson: And Shane, what were your initial emotions, thoughts to this news delivered to both of you?

Shane Weinstein: Ah, it’s a great question because I don’t…, I don’t think at the time we knew how to think. It’s a very, very sobering reality for people who are completely oblivious to what the word means, let alone how it’s going to affect your life. For the rest of your life, to be very honest with you.

So I mean, when you… when they say you have tetralogy of fallot, I mean you, you could have told me that she was going to be born with something else and I would have believed you. I didn’t know what it meant.

But what I can say is as Regina spoke about, our journey didn’t start there. Our journey started with multiple miscarriages previous to that. So the desire and the want that I knew that was in our hearts to make this happen, and this was the last time.

That to be hit with this type of news was… I didn’t know how to handle it. I didn’t know whether to cry. I didn’t… I didn’t know whether to be mad. I didn’t know what was going on. And so, it took a little while to calm your nerves and start listening to people who are the professionals.

That’s what we’ve had to learn over time is you need to put your trust in in the people that know exactly what they’re doing because you’re going to learn all of this, but you’re going to learn on the fly. And, they already knew all of this stuff, so…

Being called into a back room is never a good feeling. I can tell you that right now. Being called into a room where there’s ten, you know, medical professionals and you’re wondering what they’re about to tell you. It…, it isn’t a good feeling, but it was a feeling that I think that we were more prepared for maybe than other couples simply because we had already been through some pretty serious tragedy previous to this.

So, to answer your question, I didn’t know how to take it, but it was… it was very quick that I understood that we were going to figure this out together.

Alycia Anderson: And I also heard you say, which I think is probably really good advice for any other parents that are out there. As scary as that a diagnosis might be, take a deep breath lean in on the professionals, the teams that are surrounding you and maybe navigate slowly and understanding, it’s going to be a tough process.

Are there any other advice you can give parents that get that, like sobering news right then and there?

Shane Weinstein: You know it sounds… everybody’s gonna tell you this, “You just put one foot in front of the other, you put one…, you put one leg in your pants at a time like everybody else does.”

To put things into perspective, we had already had a child that didn’t have a life sustaining a you know heart condition. It wasn’t life sustaining. We had to… We had to cancel that pregnancy.

But in front of us… you just have to like I said you gotta listen to them, and when they tell you… what you’re not expecting is for them to say this could be a normal lifespan.

With modern medicine, this could be nothing very soon. They told us that Shaun White had it, Shaun White was an Olympic champion.

So you really don’t know in the beginning. You think the worst, you lean on the people that you that know what they’re talking about and all of a sudden you start to build these relationships with people who are now becoming your friends who are who are cardiologists at UCSF that are magicians, but now those are part of your family.

It’s all trust in the people. You have to put trust in them and you have to do your due diligence in investigating what is going on, and I couldn’t tell you from that point on how many medical journals that I had read. I couldn’t tell you how tetralogy of fallot was spelled, but I could tell you that I knew exactly what it was because I put so much effort into that.

So you just gotta trust those people. You gotta lean in on them, and it’s for you to kind of say, alright, we’re going to do this together because that’s really the only option that you have.

Because that baby in there is trusting that you’re going to put that effort in.

Alycia Anderson: Oh. Modern medicine is powerful today and I love it that you mentioned that and leaning in on these magicians, these doctors, these magic men, and I think for any parents out there with kids, with any type of challenge, disability defect, that’s a lesson that can resonate really far. So I think that’s really power.

Well, how common is this?

Regina Weinstein: Congenital Heart Defect is the most common birth defect with children in the United States. There’s like 40,000 kids, approximately babies born with these different types of disorders annually, and modern medicine has taken some insane leaps and bounds on ways to tackle, address and repair and monitor these problems over time and over lifespans.

The majority of them never go away, but it’s a management plan and like Shane said, having the right people in play, you have the right visibility of next steps and those are all things that we have to do proactively to make sure that these little potential changes that we need to make in, you know the health of our daughter are occurring at the right time.

That’s also not just physically, but also mentally, and that we’re taking the right precautions so that we don’t allow things to get too far down the line before it comes, could become something that could be detrimental to her health long-term, and these medical professionals have in our case, have gotten every single diagnosis from 12 weeks pregnant to, you know, right before Christmas we received news of our next step, and it’s… it’s just all of it is… tends to be right on point.

They just haven’t missed a beat. They’ve gotten it all right.

So this is a common thing. There’s a lot of families out there who have been exposed to different types of heart defects, whether that’s a hole in your heart, which is really common, sometimes closes, and heals itself to some of the most severe cases where you have to literally rebuild… rebuild the heart to function in different ways, because the body just did not build, it builds it as. It traditionally does when the baby was in womb.

Alycia Anderson: You’re listening to Pushing Forward with Alycia, and we will be right back.

[pause]

Alycia Anderson: Welcome back to Pushing Forward with Alycia. I’m Alycia Anderson. It is Congenital Heart Defect Awareness Week. My twin sister Regina and her husband, Shane. I am so happy that they are on to share a little bit about their personal story.

Can we talk about as much as you’re comfortable with, like Ella has had to fight through, prove, overcome a lot of milestones… Like what have been some of the significant milestones that she’s had a collect… collectively with y’all and her team kind of had to fight, prove and overcome? Because you just mentioned one, like there’s another surgery coming up.

Regina Weinstein: Yup. We were told when I was pregnant, along through the pregnancy, that her case was critical but less severe than some. She was considered a pink baby versus a blue baby. Some babies are born blue. They can’t… They don’t have the oxygenation that they need, and they go directly into surgery right away.

Ella did come out a pink baby. She thrived on her own until she was about three months, which was very close to when we had decided to start planning for the first open heart surgery. And she started showing us signs that she needed the surgery a little sooner. She was, you know, turning blue kind of gray in her hands and her limbs, and so we did go into action sooner than we expected, but not much.

But and still in that circumstance, you know, we were not critical. We were a case… we were in the hospital and they kept us in the hospital, but they had much, you know, more critical cases going on around us and we kind of were in a holding pattern until the doctor had the time to work us into the schedule due to severity.

So they did, they did a handful of repairs at that time, including some valve work. She had I guess you could consider it what? Shane, right? Like a hole in the heart type of situation where they had to close up her ventricles. If I’m saying that correctly.

And, we went home and she thrived and she ate and she grew and she was great and, you know, she was a little delayed in certain things associated to like traditional child development. Crawling, she did differently, rolling over… she didn’t have the benefit of that, as most children do, you know.

So there’s certain things that were a little bit different for us but she thrived.

Alycia Anderson: You know, she was like three months open heart surgery, and that was powerful to watch her power and navigating and being as resilient as she was as that little tiny infant.

And I remember how scary it was for all of us, specifically for you two, and I remember a moment in the hospital that was so beautiful. Where she was turning blue. All the nurses ran in and you and Shane were just like arm and arm, among this team of really angels that were, you know, caring for her and saving her and taking care of her and healing her.

And I think an important note, at least from my perspective, is sharing how important it’s been and beautiful it’s been for you two as her parents to be arm and arm in this like advocacy and walking through this path that has been very scary at times.

Regina Weinstein: That particular experience, like people that you’re in the hospital and you hear code white, code blue, code red, she coded.

She was not breathing. She was purple. She… it… it was announcing all through the hospitals, the teams ran in from every avenue of the care… you know the entire care team ran in and yeah, that was terrible.

And the only thing that Shane and I could do was hold each other, and it hasn’t always been easy.

It’s not easy as a couple of going through some of these things. You know, we’ve had to, like, really work hard to support each other, love each other, maintain our relationship because there was a lot of stress involved in it, but it is also very temporary.

The stress, the pain, the fear, it’s temporary, and these kids are so resilient and they really do… the way that she’s bounced back from these very, very difficult experiences have been… it’s mind blowing.

We struggle more than she does emotionally, and I mean physically, yes she’s going through it, but the build up in the aftermath and those pieces are very hard on an adult versus a child.

Shane Weinstein: Let’s be… first of all shout out to the UCSF nurses out there, because I’m, I’m really just gonna tell you right now… they run the place they get… I love doctors and I love our cardiologists they’re the best people in the world, but if you want to talk about who runs those hospitals it’s the nurses.

But let’s be kind of real here you know a very good example it has been her aunt, right… Not only that but her twin sister, who lived that life with her aunt, was prepared more than a lot of other people were because Regina was part of Alycia’s journey. And so whether that’s ingrained in them because the blood of the Busciglio’s was in there or just because it was a learned thing, she may be a little bit more resilient because of it.

And, you know, as Regina said, nobody’s really prepared for it, but they don’t know what’s going on. They have no idea of what’s going on, and as the years kind of go by, it was very difficult in the beginning, right. You know, there were times in that hospital when we weren’t seeing eye to eye, because we weren’t experienced in what’s going on. We weren’t knowledgeable and what we had to be. We didn’t have our emotions in check because it was all emotional.

But as the years kind of go on, and that baby that was supposed to be tiny because they’re a heart baby is not tiny. And that baby who isn’t supposed to be running around and acting the fool all the time is not supposed to be doing that, but she is. They show you the things that you’re not ready for, just like you weren’t ready for the diagnosis.

But what they’re also showing us is how awesome that can be, and how different from what the doctors say is gonna happen or possibly would happen…that doesn’t mean it’s going to, because she’s kind of defied all of those odds.

So whether that’s a learned behavior, whether that’s in your blood or whether that’s something that you have to learn, it’s a part of your life. And Regina and I have learned to embrace that rather than it being a stressor.

Now, I can’t say that when we go in for this next thing that we have going on here, that there’s not going to be times but because this is going to be #3, we can handle that a little bit better and we know that our job is to be calm and to be healing and to be loving and to be all of those things that she needs during a very, very difficult time in her life.

Alycia Anderson: She is proving what is possible, and that she’s resilient in her strength. And in overcoming, and all of that, she’s seven years old right now, like, can you see aspects of her personality that she shows today that potentially are from this?

Shane Weinstein: I think you see it. I think you see it, right now. She goes and… she’s gonna tell people she’s a heart warrior. She knows that… she knows what she’s been through, but just like you, Alycia, she doesn’t get treated any different.

You start treating them differently. They’re going to feel like they’re different. She’s special, but she’s no different than anybody else. She just has to have a couple interventions with her body than a normal kid does.

But she has best friends, she runs, she does all of those things that normal baby’s do and her expectation is that she’s going to get treated the same.

That’s the type of person that she is, and we’re gonna raise her to be that type of person because she she has her own… She’s on her own now. She has her attitude. She has the things that she loves. And she has the things that she doesn’t necessarily love.

But there’s a constant there that this is a part of you. This will always be a part of us. And we’re going to master all of these things together.

So deeper roots, stronger branches, and she is kind of the center of all of that she makes the heartbeat tick.

Alycia Anderson: Deeper roots, stronger branches, and she makes the heartbeat tick.

One other thing that you just said that is probably very useful for parents out there that might be embarking on this type of journey is the honesty about the… there’s been no hiding… in this is your path.

You know… where you dress her up when she goes to see the heart doctor, and we’re excited to be in hearts, and she knows that… you share with her what has happened in the past and what the future looks like.

And is there any advice that you can give, at least from your own personal perspective to other parents out there that might be afraid to share the journey with their little one?

Do they? Do they not? Do they? How do you talk about it? Like is there… any advice there?

Shane Weinstein: Yeah. Listen, you must embrace it. It’s going to be around forever. OK. So how do you do those things with one of the most beautiful things that I had ever seen?

My mother had open heart surgery previous to Ella being born. So, she had already had a scar on her chest.

When Ella was born and we got done with the open-heart surgery. That scar was beautiful. It was from day one. That scar was cool, that scar was beautiful, that scar was everything other than ugly, unnecessary… whatever it is.

And when you… when you grow that person to feel like their disability or her…, what she has wrong with her… is powerful. She’s just like everybody else and probably a little bit more special because they know that they’ve been through that already. Having that, you know, having my mother, it really showed me. It taught me something that day that these kids are going to eat what you’re going to give them. They’re going to be the sponge that you kind of want them to be, but as long as you let them know that this is not a negative, this is not a negative in any way shape or form.

We’re gonna make this happen, and we’re gonna learn from all of this stuff, and we’re gonna be better for it, right? But that scar is beautiful, and she still says it is to this day.

And I still make sure that every day I’m putting cream on that scar. After her shower that we talk about it, that we talk about the beauty, that we talk about how awesome she is. It’s very, very, very important for them as they grow.

Regina Weinstein: She refers to it as her beautiful scar. If she has a…, you know, we’re swimming with friends and you see kids looking, they wanna touch it, what is that?

And she says I’m a heart warrior, that’s my beautiful scar. So, she knows it’s her power… she knows it’s her… you know, big part of her purpose. And, I think she picked us…, picked this… because she’s got the strength to handle it.

I think it’s very similar to what I’ve observed with you, Alycia, throughout our lives together, which is like however we get here and whatever that journey looks like, I just think there’s something really associated to choosing it because you can handle it.

Because… and it’s the same thing for me like Shane mentioned, you know I’m… I’ve always kind of been the sideline person, the supporting person, the wait for the clock to tick while the surgery is going on.

Thank God and pray for every ounce of my being that everything is gonna go exactly how they say, and you know there’s gonna be just… everything’s gonna be good.

And I’ve done so much of that in my life, and that’s my role. You know, that’s clearly my role. And I wouldn’t change it, you know, like I just wouldn’t change it.

I wouldn’t change her. I wouldn’t change this journey. I wouldn’t change the steps, the challenges, the…, the fear. Just any of it. It’s all part of her, and she’s a very, very amazing person. So, yeah… It’s my honor to be her Mom.

Alycia Anderson: And she is the strongest, most loving heart. So she must have the most scars. I love it.

As we wrap up, did we miss anything that you think is important to know?

Regina Weinstein: I just think like one of the things that we had talked about was, you know, for families out there that are going through some of these things and new to these experiences. You know, there’s so many resources and groups and social media that you can lean in on, on and ask questions to. When you know… there is the American Heart Association and the Mended Hearts Association, and there’s things, there’s resources out there to help you understand and better understand the diagnosis and the clear future…, a path to the future.

And we’re not alone. This is a big broad disease that affects a lot of people, and we just all gotta lean in on each other.

Alycia Anderson: Community

Regina Weinstein: Yes.

Alycia Anderson: Build the community around you, and read, research.

Well, happy Congenital Heart Defect Awareness Week to my two favorite parents of the journey and all of the rest of you that are out there.

We end the show every time with the pushing forward moment. This is the time… you are both… We’re gonna have two pushing forward moments.

Shane, this is your very first pushing forward moment, make it good.

Shane Weinstein: So not all bad news is everybody’s bad news.

OK, you gotta start living that life and simply because you have a hiccup does not mean that later on you’re going to be better off for it.

I’m a better person because of what we’ve had to deal with. I’m a better father. I know Regina is. I know I’m more patient. I know that there’s a lot of things that came of what was supposedly a bad situation?

It isn’t a bad situation.

We have a fantastic daughter with a very, very strong heart that needs a little check up every once in a while, but the ramifications from what came of what was supposed to be a bad thing only turned out a multitude of great things.

Simply because somebody’s going to give you their bad news does not mean it’s going to be your bad news.

Alycia Anderson: I love that. That’s a tough one to beat, Reg. That’s really good.

Regina Weinstein: For me, all I can say is that filling life with gratitude for what you’ve been given and in these situations associated to challenges or things that feel complex, turn it into beauty.

Like that’s what we’ve done. And don’t hide it. The more we talk about it, the more we normalize it. And the more that we make it part of Ella’s DNA and the people around her, her DNA, her school celebrates Congenital Heart Defect Week, things like that.

Make it a forward thinking thing. Make it something that’s not hidden so that we try to erase some of the things associated to fear of being different or something.

That’s something about me that’s not like everybody else.

Just have an open mind. Just share your stories. Lead with love and honesty and openness.

Alycia Anderson: Well, I thank you both for inviting me on this journey with our sweet little Ella because it’s been the absolute joy of my life. There’s no one that I love more.

So thank you so much for doing this, this was such a beautiful conversation.

Thanks for your time, Shane. We’re going to be back on to talk about other things.

Shane Weinstein: I love you.

Alycia Anderson: I love you too. I love you, Reg. I’m proud of both of you.

And thank you so much to our Pushing Forward with Alycia community.

This has been Pushing Forward with Alycia and that is how I roll on this podcast.