Heart Sister to Heart Sister

In today's program Katie Hunt talks about what it was like to grow up with tetralogy of Fallot and how she longed for a sister or brother. She talks about what it was like to be bullied in school and how that experience led her to move to a new school and to develop a relationship with a little girl that would blossom into a full-fledged sisterhood, not only for Katie and Amanda but for their mothers and entire families! Learn how these families' lives became entwined and how, together, they experienced a miracle.

Transcript

spk_0:   0:00
Theo

spk_1:   0:05
Theo. The 11th season of heart to heart with Anna, our theme necessities in his heart Warrior siblings. And we have a great show for you today. Today show his heart, sister, Toe, heart sister And our guest is Katie Hunt. Katie will be telling us what it was like to be an only child, what it was like to meet Amanda and develop a sister relationship with her and then how she handled losing Amanda. Katie Hunt is a 27 year old congenital heart defect warrior with tetralogy of below or T o. F. She had her first open heart surgery in 1990 for her T O F repair and valve replacement. She has since had multiple pulmonary valve replacements. Katie and only Child started a new school at the age of 13 while helping in a kindergarten room of her new school. She met five year old Amanda. Katie soon realised Amanda was also born with congenital heart defects. From that point on, the pair became his closest sisters. Sadly, in 2013 at just 16 years of age, Amanda passed away suddenly welcome to heart to heart with Anna Katie.

spk_2:   1:13
Thank you and It's great to be here.

spk_1:   1:16
Well, I'm so happy to have you on the program, and I'm going to start by talking about what it was like to grow up with tetralogy of Philip

spk_3:   1:23
growing

spk_2:   1:23
up with CHD specifically the tetralogy of flow. My family never kept me in the dark about my heart. They wanted me from a young age to be able to tell whoever wherever if something was wrong and I needed medical help, they let me ask the doctors questions. They kept me like every appointment I was able to be involved in. It didn't bubble me. They let me push my limits and figure out what my personal limits were. Had one surgery as a baby and another a month before my 11th birthday. I remember coming out of surgery, asking for a drink, food and to go home already. My

spk_3:   2:03
spunky person

spk_2:   2:04
that got me out of the hospital from that surgery in less than four total days. I went in on a Tuesday and I was out Friday morning.

spk_1:   2:12
That's just amazing.

spk_2:   2:14
Yes, I don't hear of anybody getting out that fast. Almost ever.

spk_1:   2:19
Oh, my goodness. So you were pretty adamant. I want out of here?

spk_2:   2:23
Oh, yes. I was chasing the nurses around, asking them to get my IV's out on Thursday.

spk_1:   2:31
Well, it sounds like you had a very smooth recovery. If you could go home that quickly.

spk_2:   2:37
Oh, yes. And the next day, I was at a school function. Oh, my

spk_1:   2:40
gosh. For you. Really?

spk_3:   2:41
Yes. What? Everybody was like, What are you doing here? You shouldn't be here. You just have surgery four days ago. Oh, my gosh. Your parents

spk_1:   2:52
must have just been beside themselves.

spk_2:   2:55
I pushed my limits as hard as I could. I didn't let anything stop me. I

spk_1:   3:01
think that's awesome. And I hear from other tetralogy of fellow heart warriors that that's how it can be. You know that you can be really, really sick, and you really, really need surgery. But then after you have that surgery, you feel like you have a new lease on life.

spk_3:   3:17
Oh, yes. That's what

spk_2:   3:18
happened when I had my melody valve placement in December of 2015. I even took pictures of the day before my valve placement. And the day after, I could see the blue just completely go out of my face. I see like a total different person, and I was able to do dishes. I was able to run with my daughter again. It was a total 1 80 from what I had felt the day before

spk_1:   3:45
as a youngster. 89 10 years old. Could you tell that she didn't have the energy level that your friends had?

spk_3:   3:53
I could. To an

spk_2:   3:54
extent, I like I said, I pushed myself. I didn't really care. My teachers were all aware of my heart issues, so they knew when I started to look a little blue around the mouth to tell me to go sit down for a few and I would put up quite a fight because I wanted to be like everybody else.

spk_3:   4:15
But I knew

spk_2:   4:17
when I really needed to stop, okay? And I just pushed myself until I hit that point.

spk_1:   4:24
So you were self limiting.

spk_3:   4:26
No, I am now. I know

spk_2:   4:31
I didn't do that as a child. I pushed and I pushed. Except for when the doctor said running or something like that, they would notice, scale that back.

spk_1:   4:41
So would you push yourself to the point that you would faint

spk_2:   4:44
one time in P E I have that happen? I wanted to play the game that all the other kids were playing. It was called busy stick. You put your head on a bat, spin around 10 times and run back to your team. And I ran did that. And on my way back, I went face first into the gym floor. Oh, my gosh. She and my family was not happy. I had a massive lump on my chin. They had to take me to a special doctor to go make sure there was nothing broken in my phase. That that one with bad.

spk_1:   5:23
Yeah, that sounds bad.

spk_3:   5:25
Wow. I wanted to do what everybody else did it. Well, of course

spk_1:   5:29
you did. Now, were you on aspirin therapy? Is that one of the reasons why it looks so bad?

spk_2:   5:34
No, It was just how hard I hit.

spk_1:   5:37
Okay, T Ouch. Oh, Okay. So what was it like for you to grow up as an on Lee child? Did you often find yourself longing for a brother or sister?

spk_2:   5:49
Oh, yes. I always asked for a brother sister, but my family always told me that because of my heart, they wanted to be able to focus on me and me alone. And they were worried that they wouldn't be able to give another child the same attention that they had to give me. So I became very academically inclined because my physical wasn't quite up to power with everyone else. So I put my nose in a book, and that kind of made my social life lack white. Obey it. Sure. Even as a younger child, Well, I went to for the first and largest part of my childhood was straight. But when it came to bullying, they kind of just threw the book away and looked the other way. So I believe having a sibling around would have helped me. Maybe deal without a little bit better. Have someone to talk to other than people that wouldn't listen to me.

spk_3:   6:46
Yeah, I do still

spk_2:   6:47
have some social anxiety trying to meet new people to this day, I think because I don't

spk_3:   6:52
have a sibling, but you just gotta

spk_2:   6:55
learn howto keep going.

spk_1:   6:57
All right. All right. Tell me about what it was like for you to move. As a teenager, you had just turned 13 years old and all of a sudden you're moving to a new school. What was that like for you?

spk_2:   7:10
That was one of the most amazing things that happened to me. Like I said, I was bullied at the school that I went to for the first and largest part of my education. And the ridicule from the other kids was just getting to a point where even the teachers looking the other way was my family wasn't putting up with it anymore. So instead of giving them our money because I went to private school, my entire education were like, Okay, you're losing our money, and we're going to take it somewhere else. And you can keep this bullying problem,

spk_1:   7:43
right? Right.

spk_3:   7:44
So the new school

spk_2:   7:45
I moved to was a year behind the one that I had previously been attending, and I was presented with the offer to skip eighth grade and move on to ninth, which was an amazing opportunity that we took advantage of. I've fit in a lot better at the new school, even though I was a year younger in ninth grade than the rest of the ninth graders. They accepted me a lot more when bullying happened on campus. At that school. It was taken care of immediately, whether it be verbal or anything else. So that was one thing we really liked about that

spk_3:   8:20
school, right. They

spk_2:   8:21
also took into consideration my limitations that the doctors had set, unlike the other school on occasions. So on running days, I listen into various elementary

spk_0:   8:33
classrooms to be like a teacher's aide on,

spk_2:   8:36
and that turned out to be a life changing year for me in more ways than one

spk_4:   8:41
takes this hot industry. We're offering us a mechanical hot, and he said, now that I've had enough to give it to someone worthy, my father promised me a golden dressed twirling held my hand and asked me where I wanted to go. Whatever stride for conflict that we experienced in our long career together was always healed by humor.

spk_5:   9:02
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,

spk_0:   9:13
you are listening to heart to heart with Anna. If you have a question or comment that you would like to dress down, show police in an email to Anna Dworsky at Anna at heart to heart with anna dot com. That's Anna at heart to heart with anna dot com Now back to heart to Heart with

spk_1:   9:32
Katie Before the break, you were telling us about how you had a life changing experience when you were going into kindergarten classrooms and you were participating like a teacher's aide. I actually had a similar experience, and I also found it to be life changing and much later became a teacher of the death. So tell me about meeting Amanda.

spk_2:   9:56
When I met Amanda. I never once thought she and I would become a CZ closers. We did. She wasn't kindergarten and I was in ninth grade, which is quite the age difference. And you

spk_3:   10:06
really don't become

spk_2:   10:07
friends when you're almost 11 years different in age,

spk_1:   10:12
right?

spk_3:   10:13
And I don't remember

spk_2:   10:13
exactly the first time I met her because I was in and out of the classroom so much almost on a every couple Daya Week basis. But I do remember when the stars line for what became our sisterhood. We were having a Western day at our school, and her mom had supplied a horse, John Carriage, for the event for all of us students toe take of eye it around the parking lot, and somehow, at the end of the day, her mom and my family got to talking and the whole CHD thing came up because I had mentioned to them that her shirt moved and I had seen a scar. Then, from there, our family started pushing us trying to get us to bond and me being a preteen teen ager and her being, Ah, five year old. I have a four year old personally, so I can kind of see how she was in my own daughter.

spk_3:   11:04
We bought it heads,

spk_2:   11:05
and we weren't quite having it.

spk_3:   11:07
But I'm so thankful

spk_2:   11:09
that over time we both soften to each other and changed and grew into sisters.

spk_1:   11:15
Wow, So what was she like?

spk_2:   11:18
She was so spunky and set in her ways as a 56 year old that was one of the hardest times to try to become friends with her. It blossomed a lot more when she hits second and third grade, and we actually were able to talk and be human with each other. Otherwise, I was just that pesky big sister that

spk_3:   11:42
she didn't

spk_2:   11:42
want anything to do with in your taking over my area and my mom and stuff like that. But her mom, like I said, had the horses and I would go over after school because my grandmother was the after school care coordinator at the school that we were attending. And me being my ninth grade better than everybody Self didn't want to stay there. So I go play with Amanda and the horses and help the mountain everything. And we finally, just over time, getting to know the horse is getting to know each other.

spk_3:   12:18
She became my little sister, and we had our ups and

spk_2:   12:21
downs over the years, and we went a couple of years where communication was lacking quite a bit because we were in different places. But no matter what happened, we were able to go back to each other and just figure out where we needed to be in everything. When I moved back in with my mom when I was 21 she was living next door to Amanda and Veronica, who is Amanda's mom. And Amanda was a lot like I was in ninth grade, and I could see it, and we became very, very close. Then I was 21. She was

spk_3:   13:00
14 I want to say,

spk_2:   13:02
and any time she had problems with her mom, she would come over to the house and talk any time her heart was acting weird. She'd come over and we'd talk and be like, Is

spk_3:   13:11
this normal?

spk_2:   13:12
And I'd kind of help her out with making sure she knew when she needed to say something and well, was okay and could be just left alone and stuff. So our moms even became best friends. That's why they wound up living next to each other,

spk_1:   13:28
Don't you think? That's amazing. So you were an only child. And it sounds like Amanda was also an only child.

spk_2:   13:34
Yes, she waas.

spk_1:   13:35
So I think it's kind of natural the way you two gravitated to one another because you did have so much in common and you were both alone Most Yeah, as far as not having siblings. Wow.

spk_3:   13:49
How did

spk_1:   13:50
finding ah heart sister in Amanda help you deal with your own congenital heart defect? It sounds like you were great at helping her to figure out whether or not what she was experiencing was normal, but was there also a reciprocal relationship regarding your own heart.

spk_3:   14:05
Honestly,

spk_2:   14:06
I'm not sure, because growing up with my family, making sure that I knew everything I needed to know her mom kind of kept her

spk_3:   14:17
bubbled and oh, no, no, baby, that's okay. We'll go see the

spk_2:   14:20
doctor and stuff like that and my family talk to me about it. Tell me what's wrong. And that's how I was able to help her with a lot of things was because I knew my body so well. I knew when things were normal versus not normal. And I know every CHD and every case is different, but a lot of the symptoms are very similar

spk_1:   14:44
now. Did she have the same heart defect you had, or did she have something different?

spk_2:   14:48
She had Epstein's anomaly.

spk_1:   14:51
Okay, so that's significantly different, I guess, from tetralogy of fellow.

spk_2:   14:55
And she had had six different surgeries as a very young child before I ever met her, and she was born very prematurely, so

spk_3:   15:04
she had a

spk_2:   15:05
lot of hurdles to get through. But when I met her, she was doing very, very well,

spk_1:   15:10
okay? And you said that your mother became friends with her mother did

spk_2:   15:14
that. You did

spk_1:   15:15
that mean that the two families spent a lot more time together?

spk_2:   15:20
Oh, yes. Oh, yes, my mom. Especially after I got pregnant with my daughter and me and my fiance moved out. My mom would go on trips with them, and my mom and her would take trips like all the time. And then my grandmother would talk to her almost every morning.

spk_1:   15:39
Wow. So even your grandmother became close to a man.

spk_2:   15:43
They were all very What a tangled web we weave

spk_3:   15:46
way Everybody talked to each other. Wow. I mean, you became

spk_1:   15:53
extended family toe. Wanna

spk_3:   15:54
know? Yes. Wow. They even helped

spk_2:   15:58
us make our big move from South Florida to Central Florida. So that was a huge help. Instead of having to buy multiple moving trucks, they brought their horse trailer and we loaded a

spk_3:   16:10
whole bunch of

spk_2:   16:11
our stuff up in the horse trailer and saved a whole bunch of money.

spk_1:   16:14
Wow. Oh, see, that's amazing. It sounds like you're serendipitous. Meeting with Amanda not only affected you and your opportunity to find a little sister, but it affected your

spk_5:   16:28
mother, your grandmother, your entire family.

spk_1:   16:33
Wow, That's a beautiful story. I Love It

spk_5:   16:42
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spk_1:   17:49
Katie Before the break, we were talking about Amanda and how your family's became intertwined. So I can't even imagine what it must have been like for you to lose your heart. Sister, can you talk to me about that?

spk_2:   18:04
Waking up to that phone call was definitely one of the most soul crushing moments of my life. She passed away in her sleep and my wake up call that morning was my mom calling to tell me the news. I don't think I've ever cried so hard in my life. My fiance. I couldn't even get the words out to tell him what happened when my mom called. He's just looking at me, bawling in hysterics and trying to find out what, Trying to deprive the phone out of my hand. And when my mom told him he I had never seen him cry. And he broke down

spk_1:   18:42
because he knew who she was as well, right?

spk_2:   18:45
Oh, yes. He had lived with us for a few months before we moved out together.

spk_3:   18:51
She was a little sister to him, too. Hey, adopted her with me. We came as a kind of a package deal.

spk_2:   19:00
Our four year old currently was a four month old at the time, so she started freaking out because her mom and dad are going crazy over. She doesn't even know what that was. Just a really hard morning.

spk_1:   19:13
Yeah. Oh, my gosh. I can just imagine so who was it Who found Amanda?

spk_2:   19:20
It was her mom. She had gone in to go get her up for

spk_3:   19:23
school. Well,

spk_1:   19:25
well, that must have just been so hard for your entire family.

spk_2:   19:29
Oh, yes. And Nick and I nixed my fiance. We had to pack up the baby and head over to Lake City, which was a couple hours away from where we were currently living. And go just be with my mom, be with Amanda's mom and anything anybody needed help with or anything. Just try and be there as a family unit, because that's what we were. That's what we were made to do,

spk_1:   19:56
right? Right. And since Amanda was an only child, and I only hear you talk about her mother, So I'm thinking there was no father in the picture.

spk_2:   20:06
He was in the picture to an extent, her mom, and that had been separated, divorced for quite a few years. So a man who still had a relationship with her dad, but it wasn't like her mom's,

spk_1:   20:23
right, right? What I'm wondering is, it sounds like your mother had really taken Amanda's mother toe heart as well. So was it hard for your mom to see her friend lose her daughter.

spk_2:   20:35
It was horrible. She took the whole week off work and was by her side every step of the way.

spk_1:   20:42
Wow, that's a good friend. That's a really good friend. I know you have unusual experience. Some time later, can you tell us about what happened to you sometime after Amanda had passed away?

spk_2:   20:59
Well, one of the things that happened two weeks after she passed away was her mom passed away in my mom's arms. She had a stroke, which, in my opinion, she died of a broken heart. She was so upset and heart broke in that her heart and everything just couldn't handle it anymore. She passed away in my mom's arms, and then, about a year later, my fiance and my daughter and I were in a car accident with an 18 wheeler. They bumped into the side of us once we were able to correct it, and then they bumped into the side of us again and sent us spinning across the lanes of traffic on I 95 here in Florida and our tail and went into the back of Ah, different car and brought the trunk in the backseat into me and my daughter. And we should have been smashed by other cars. That truck something should have smashed into us and honestly killed us the way we were out of control on that road. And somehow, someway, we lay indeed perfectly in the median, facing the opposite direction. But we were where we could not be touched by another car. Thankfully,

spk_1:   22:20
that's a miracle.

spk_2:   22:22
Definitely. I believe we had one angel on the front end and one angel on the back end carrying us into that median.

spk_1:   22:29
Amazing. When you told me that story before, it gave me chills, and it still gives me chills. I believe in angels. And it definitely sounds to me like Amanda and her mother were there wrapping their arms around you and your family.

spk_2:   22:44
Definitely. We walked away with bumps and bruises. Well, Nick has a couple of slip fists or something like that, but no broken bones. No, no, nothing.

spk_1:   22:55
Wow. And your baby? Your baby? Who was I imagine? In the back seat?

spk_2:   23:00
Oh, yeah. She was a year and three

spk_3:   23:04
months old, so I was in

spk_2:   23:06
the backseat with her. We actually had something sitting in the front seat that night. So just like everything that had happened was just so weird because it

spk_3:   23:16
could have been

spk_2:   23:16
a lot worse. Her car seat actually came loose due to the impact on the back end. My whole I was sitting on the right side of her in her car seat, which was in the

spk_3:   23:26
middle. The whole left

spk_2:   23:28
side of my body was bruised because I was holding her carseat in its place. Oh,

spk_1:   23:34
my gosh.

spk_2:   23:35
That's how much the impact was in the back end

spk_3:   23:39
when not the feet loose. Wow. And she didn't even have a bruise on her. So she was

spk_2:   23:48
definitely wrapped in angels.

spk_1:   23:49
And had you been in a front seat? Do you think your fate may have been different?

spk_3:   23:55
I think hers may have

spk_2:   23:57
because her car see, definitely would have gone moving me Not so much. I mean, I probably would have fewer back problems now, but the front seat was actually one of the safer places to be in all honesty, because of the back and hit, which is where most of the damage was done and the seat coming into my back and knocking her c lose everything the image wise was in the back end where we were.

spk_1:   24:25
Wow. So it sounds like you were where you needed to be to save your baby's life. Yes, definitely amazing. Well, tell us about how losing Amanda has affected the way you deal with your own heart defect.

spk_2:   24:41
At one point in my life, about 18 1920 years old decided I could take care of myself. And I let myself go without care for a couple of years, and I definitely don't do that anymore. We lost Amanda mostly due to a lack of care, a lack of ch d care and I very much advocate for those that are getting 18 19 years old to not lose out on care just because mom and Dad don't take care of you anymore. You need to take over and take care of yourself. Amanda didn't hit that point, and I wish I would have known that she was out of care like she was. But I was pregnant at the time, and there was just a lot of stuff going into what had happened that I feel partly like maybe I could have done something, but a lot of The problem is parents and other people are told that their child is fixed more, their child is cured or the surgery fixed everything. And that's not the truth. CHD is lifelong. Surgery doesn't fix it. I know this. So I go see the doctor every 6 to 12 months. I've been out of care for about a year now due to medical insurance issues. But my insurance started February 1st, and I will be going to the doctor on February 5th, which I think this will have played by then. And I'm on top of my care compared to what I was before.

spk_1:   26:21
Yeah, it sounds like Amanda was an angel had helped to save your child and save you. And it sounds like her life had meaning. And maybe that meaning was to help you to know how to take care of yourself and to be the advocate that you have been. You're really, really good about going out and telling other heart warriors. Don't take this for granted. Don't let there be a lapse in your care. Make sure that you're taking care of you.

spk_2:   26:52
And I also tell some of my friends to have their babies checked knew that. Oh, to monitor. It's just a little clip on their toe. It's not an injection. It's nothing that's gonna hurt your baby. But it's something that could save you from heartache a couple months down the road, a couple days down the road, or even from some of these teenagers that they have underlying heart issues. And they may have known. Have they done that? Oh, to test when they were baby.

spk_1:   27:18
All right, all right. I think that's just so important. Now. There were more and more hospitals that are putting a pulse oximeter on the infant before they leave the hospital to make sure that they're saturation levels are okay, because that can be an indicator for some, not all. But it can be an indicator for some congenital heart defects. And you're right. Getting that heads up can be the difference between life and death. Well, I'm gonna ask you one more quick question. And that is what advice would you give other heart warriors Or siblings who are facing a loss like you did with Amanda?

spk_3:   27:52
I would say stay

spk_2:   27:53
strong. It never really gets easier. I know a lot of people say It will get easier over time. But that's a lie. No matter who you lose. Being a parent, a sibling, even a not blood sibling, it doesn't get easier. Remember your inside jokes and think about them often. Keep any pictures that you have, or even if you have a heart warrior that's still alive. But they're not doing well. Take pictures. I actually went back, and I only have one picture of me and Amanda that I have been able to find, and I so wish I had more. So if you're facing a potential loss in the next couple of years, take lots of pictures. Enjoy the time you have with, um And don't take a single moment for granted. And I have days where I want to call her and talk about things. But I've learned that the days pass and life moves on and I know I have some extra angels on my side. Now.

spk_1:   28:55
I think you've had that demonstrated. So you definitely have some angels with you, and I want it. Thank you for coming on my show. I feel like you were an angel today. Coming on my program.

spk_2:   29:07
Thank you, Anna.

spk_1:   29:09
Well, that does conclude this episode of heart to Heart with Anna. Thanks for listening, Friends. Please come back next week on Tuesday at noon Eastern time. And until then, you can leave a review for our podcast on iTunes. Remember, my friends, you are not alone.

spk_6:   29:23
This'll program is a presentation of hearts. Unite the Globe and it's part of the Hug Podcast Network are tonight The Globe is a nonprofit organization devoted to providing resource is to the congenital heart defect community to uplift on power and enrich the lives of our community members. If you would like access to free Resource, is pretending to the CHD community. Please visit our website at www dot hug dash podcast network dot com for information about CHD, the hospitals that treat Children with CHD summer camps for CHD survivors and much, much more.

spk_0:   30:04
Thank you again for joining us this week way. Hope you have been inspired on. Empowered to become an advocate for the congenital heart defect community. Heart to heart with Anna, with your host and Dworsky can be heard every Tuesday at 12 noon Eastern time