0:00

We got a prenatal diagnosis of

0:02

Down syndrome and she

0:04

had a balanced AV canal defect when

0:07

I was pregnant with her . I always tell

0:09

people I totally feared the wrong diagnosis

0:12

["The

0:18

Heart to Heart"] .

0:19

Welcome to Heart to Heart with Anna IM . Anna

0:21

Dorsky , your host , also

0:23

a heart mom too , an adult . She was born

0:25

with a single vitro cohort and he was

0:28

29 years old . That's the reason I'm

0:30

the host of your program . With me

0:32

today is Ellen Boyer . Ellen

0:34

is married to Bo Boyer and they have

0:36

three children Brett Wells

0:38

and Lottie . Brett was born with Down

0:41

syndrome and a congenital heart defect

0:43

. Sadly , brett passed away due to complications

0:46

from her jaw or heart defect . Ellen's

0:49

with me for today to talk about World

0:51

Down Syndrome Day . This day has

0:53

been officially observed by the United

0:55

Nations since 2012 . The

0:58

March 21st 2024

1:00

call is for people around

1:03

the world to end the stereotypes

1:05

. Ellen and her family started

1:08

the Brett Boyer Foundation in honor

1:10

of her daughter . Ellen is the executive

1:12

director of the Brett Boyer Foundation

1:15

and today we'll learn more about

1:17

that foundation and how you can help them

1:19

with their mission . After our

1:21

interview today , meaghan Tones and

1:23

I will take turns reading essays from chapter

1:25

five of the Heart of a Heart Warrior . You

1:28

can sign up to take part in a book study

1:30

of volume two on our website , babyheartspresscom

1:33

. We'll be discussing the

1:35

book's Thursdays from five to six pm

1:37

. Usa Central Daylight

1:40

Savings Time . We'll discuss

1:42

the book starting on Thursday , march

1:44

21st , which just happens to be World

1:46

Down Syndrome Day . It's

1:48

only $10 a session and anyone

1:50

is welcome to join at any time

1:52

. Now on to the show . Welcome

1:56

to Heart to Heart with .

1:57

Anna Ellen . Oh , thank you so

1:59

much for having me . I'm so glad

2:01

to be with you .

2:02

Well , I'm so excited to have a chance

2:05

to talk to you today and to learn more

2:07

about your nonprofit organization . So

2:10

, first of all , a mutual friend of ours , Katie Swan

2:12

, told me I had to meet you and

2:15

I had to have you on the podcast . The more

2:17

I learned about you , the more I realized oh

2:19

yeah , she is absolutely right . So

2:21

I really enjoyed reading about the

2:23

Brett Boyer Foundation on your website

2:25

. For those who don't know about this foundation , can

2:29

you tell us why you started it and

2:32

what your foundation does or who

2:34

it helps ?

2:36

Absolutely . Thank you . And yes , I agree , katie is

2:38

just the best . I'm so thankful

2:40

that she connected us and I'm

2:43

so thankful to know her . She's such

2:45

a gift to the CHD community . We

2:47

started the Brett Boyer Foundation in 2017

2:50

. My precious

2:53

firstborn Brett . We

2:55

got a prenatal diagnosis of Down syndrome and

2:59

she had a balanced AV canal

3:01

defect . When I was pregnant with her , I always

3:03

tell people I

3:05

totally feared the wrong diagnosis . There

3:08

were a lot of intricacies of her

3:11

diagnosis of , yes , she might have Down

3:13

syndrome . No

3:15

, it looks like low risk . We

3:17

did not have an amnio . But when we finally found out

3:19

that

3:22

she had an AV canal , that kind of solidified the

3:25

diagnosis for us and

3:28

I thought , well

3:30

, they're telling me that they can fix her heart , because

3:32

you know they still love to use the term fixed

3:35

. They can fix

3:37

her heart . But what about Down syndrome ? Because I was so fearful of

3:39

all the things that they

3:42

kept telling me she would never do . I

3:44

was terrified of what it would do to our family , to the

3:46

dynamic , because I wasn't lucky enough

3:48

to know and love someone with Down

3:51

syndrome . So I was

3:53

so scared of what I didn't know . And

3:55

then , the minute she was born , I realized

3:58

how wrong . I was that how I feared the

4:00

wrong diagnosis and

4:02

that Down syndrome was a part of her and

4:05

it was a part of her that I would not change for the

4:07

world , that I'm so

4:09

grateful that she chose us and that that

4:11

was a part of her . It wasn't

4:13

everything about her is a part of her . That

4:16

, I just think , is wonderful . It's

4:19

always the top of our mission . Of

4:21

the beauties that

4:23

she taught us is that Down syndrome should be celebrated

4:26

and

4:28

does not need a cure , and that the

4:30

HD needs a cure , and

4:33

that's what took her from us . Yeah

4:35

.

4:37

Isn't it funny how your

4:39

world completely changed in what you were thinking

4:41

and how you were thinking about it , and

4:43

how interesting that the world Down

4:46

syndrome day is to stop the

4:48

stereotypes . And

4:51

that's exactly what you were having to face yourself For sure .

4:56

Of all the things that they told us that Brett may never

4:58

do , none of that was considering her heart defect

5:00

. Those predictions

5:03

on what she would accomplish with her life

5:06

were

5:09

only based on her

5:11

pros and I . Never , in a million years , even before

5:15

we talked about having children , do you think

5:17

that your child would be able to change the world for

5:21

an entire massive group of people . And she did , and she

5:24

has and continues to . There's

5:26

just so much that I'm so thankful that

5:29

we never put her in

5:31

a box the way that sometimes people that are just misinformed

5:34

and uneducated about Down

5:36

syndrome and just so

5:38

thankful that we get to see her legacy continue . It's

5:41

just the honor of my life .

5:44

It's pretty amazing what

5:46

people with Down syndrome can do . When my second

5:49

child who has a good job heart defect was

5:51

born , we were living out in a country in Texas , in

5:53

a teeny , tiny town called Mound Everybody

5:57

always says flower mound , like now . Now that's near

5:59

Dallas . I was way out in central

6:01

Texas in the middle of nowhere , where

6:05

there are more cows than there are people . Wow , and

6:07

my neighbor down the street had Down

6:10

syndrome . Yeah , and she wrote

6:12

a column for Mound , for the Gatesville

6:14

newspaper . Because

6:17

Mound is so tiny we didn't have our

6:19

own newspaper , but they always let us have part of the

6:21

Gatesville newspaper once

6:23

a week and she would write the news so

6:26

we knew who was happy lunch with whom

6:28

or who went out to a movie . It was like walking

6:30

back in time when I lived out there

6:32

. It

6:37

was amazing . And

6:39

this woman who was born with Down syndrome she's

6:42

in her fifties now and

6:44

she was just like

6:47

the star of the town . She

6:49

knew everything that was going on and

6:51

that was her job . She didn't get paid for it , but

6:54

that was her mission was to keep everybody

6:56

apprised of what's going on in the

6:58

big metropolis of Mound , texas

7:00

.

7:02

And she was like . I'm sure her beautiful

7:05

life , her visibility , her contribution

7:07

to the town made everybody's

7:09

stigma about how

7:12

much value she

7:14

brings I mean to everybody that meets her

7:16

and how much each life

7:18

has such great purpose . Absolutely

7:21

, the amount of chromosomes that we have don't change

7:23

, that , it amplifies

7:25

. No , it doesn't .

7:26

Yeah , and you know how love late

7:29

that we're not all exactly alike , right

7:31

? I love it that we have different

7:34

interests , we have different abilities

7:36

, we have different things that

7:38

excite us . I was a homeschool mom

7:40

and one of my dear friends who was a homeschool

7:42

mom . We were co-coaches for

7:44

our children's robotics club

7:46

and her aunt has

7:49

Down syndrome . Her aunt

7:51

didn't have the same skills that my neighbor

7:53

did , but her

7:56

aunt is just such a joy to

7:58

be around and when she's with

8:00

her aunt they dress up like princesses

8:03

and they go to tea and they

8:05

did fun things . I kind of feel like

8:07

her aunt is a reminder of

8:09

not ignoring the child in us

8:11

and that it's okay to be child

8:14

like and see joy in everything

8:16

, because that's how her aunt is she just finds

8:19

joy in everything . And

8:21

isn't that lovely that we have someone

8:23

like that in our lives .

8:25

I know , and that's what I want to be like , and

8:27

that's what I want to be around , and

8:29

I mean , why would you not want to find joy

8:31

in everything ? It's just a

8:34

beautiful reminder and something

8:36

that our society needs so

8:38

badly . I'm so grateful to

8:40

know and be a part of this community

8:43

and I'm so thankful

8:45

that Brett came to us exactly

8:47

how she was .

8:49

So tell me , now that we've talked about

8:51

that , what does World Down Syndrome Day mean

8:54

to you ?

8:56

World Down Syndrome Day means to

8:58

me celebrating

9:00

our differences , like we said before , celebrating

9:03

what everybody brings to the table , acknowledging

9:06

that they deserve a seat at the table and

9:09

recognizing that all of our strengths are different

9:12

. And one of the biggest things

9:14

that Brett taught me is no matter how old you

9:16

are maybe you haven't figured out

9:18

what your strength is yet and that

9:20

you have the ability to

9:22

see it in other people and to help them recognize

9:25

it as well .

9:27

Yeah , it feels like Brett gave you

9:29

a whole new mission in life .

9:31

Absolutely and

9:33

absolutely to never put limitations

9:35

on yourself , but

9:38

also to know that you have absolutely

9:41

no right to put limitations on other

9:43

people .

9:44

Right .

9:45

I know you and I talked before we started

9:47

recording about when we received her diagnosis

9:49

. We had many doctors

9:51

that absolutely

9:53

saw her worth right off the bat and I'm so

9:56

grateful that they were so compassionate

9:58

about honoring

10:00

her life and recognizing she

10:02

is our child and is no differently

10:06

loved than our other two . But

10:08

there were still a lot of people that

10:10

immediately put limitations on her before

10:13

she was even here , and it's

10:16

so hard as a parent to

10:18

hear that and not to

10:20

feel fear . Immediately

10:22

Before

10:25

she was born there were a lot of things

10:27

that I definitely didn't think that I could do

10:29

and she brought out good

10:31

in me that I

10:34

didn't even know that was in there . That

10:36

is something that forever I will never put

10:38

limitations of what someone is capable of .

10:41

I love it . For those who have

10:43

not visited your website yet , can

10:45

you give us URL for your website ?

10:48

Yes , the website is

10:50

the Brett Boyer Foundationorg

10:53

. That's Brett with two T's . Our

10:55

logo is the Queen Bee , because

10:58

that's what we called her , our Brett the Queen Bee . Yellow

11:00

was just her color . And another

11:03

thing that kind of made

11:05

my heart so happy was , years before

11:08

I was even pregnant with her , I had saved in my

11:10

phone it said aerodynamically

11:12

the bumblebee shouldn't be able to fly

11:14

. But the bumblebee doesn't know that , so they just

11:16

keep on flying anyway . I

11:19

was reminded that while

11:21

I was pregnant and going through all of the

11:23

emotions that are part of receiving

11:25

a diagnosis . That's scary . Anything

11:27

different is scary . And I

11:30

read that and I was like we're not going to tell

11:32

her what she can and cannot do , we're just going

11:34

to be along for the ride , and sometimes

11:37

things take longer and they're that much

11:39

more of a celebration and I just

11:41

want to be part of it . That is why

11:44

it's all bees and one

11:47

of you will see the bumblebees

11:49

flying around on our website .

11:52

I love it . I love it . Thank

11:54

you so much for coming on the program

11:57

today , Ellen . I have so enjoyed

11:59

meeting you , hearing about

12:01

the Brett Boyer Foundation , and

12:03

I know we're going to be talking about it even

12:05

more next week .

12:07

Thank you , anna , I've enjoyed it too .

12:10

Okay , my friends . That concludes the interview portion

12:12

of the podcast . We'll take a short break , but when

12:14

we come back you'll have a chance to hear

12:16

my co-editor , megan Toste , and we

12:18

read aloud from our new book , the

12:20

Heart of a Heart Warrior , volume 2 , endurance

12:23

, chapter 5 . This content

12:25

is not intended to be a substitute for

12:27

professional medical advice , diagnosis

12:30

or treatment . The opinions expressed

12:32

in the podcast are not those of

12:34

Hearts Unite the Globe , but of the hosts and

12:36

guests , and are intended to spark

12:38

discussion about issues pertaining to congenital

12:41

heart disease or bereavement .

13:07

When I was a kid having my surgery in the 1990s

13:10

, there was very little entertainment

13:12

available . Our choices

13:14

included playing Alex Kidd in Miracle

13:17

World on the Sega Master System 2

13:19

. Someone had stolen

13:21

a Wonder Black cartridge from the box . The

13:24

boy who could fly , or

13:26

Conan the Destroyer the

13:29

latter was fairly questionable entertainment

13:31

for young children and perhaps that's

13:33

why we watched it repeatedly . Fun

13:35

fact , arnold Schwarzenegger had

13:37

a bi-custodial aortic bowel , so it may

13:39

not have been completely inappropriate . As

13:43

the youngest in my family with an older brother

13:45

and older , mostly boy cousins

13:47

, I ended up seeing a lot of action

13:50

movies , and the actors seemed

13:52

to me to be the embodiment of endurance

13:54

, taking injuries with

13:56

an almost robotic calm in the pursuit

13:58

to whatever end . While

14:00

we may not look or feel like action movie

14:03

heroes , and we certainly don't have

14:05

their salaries , we endure nonetheless

14:07

, as do our loved ones who support

14:10

us . As time passes

14:12

, the medical field advances and we

14:14

may find answers to why we feel and

14:16

experience what we do . All

14:18

more questions may be raised . My

14:21

own experience has been that my health has

14:23

not been linear . I am healthier

14:25

at age 40 than I was at 26

14:28

, thanks to medications not available

14:30

back then . In

14:32

the three chapters that form . The middle of this

14:34

book , service , motherhood

14:37

and Facing my Mortality , you'll

14:39

meet many others who have enjoyed the challenges

14:42

that come with reaching adulthood and older

14:44

age with CHD . In

14:46

Service , you'll read about heartwarriors

14:48

working in the medical profession , as

14:51

well as those who have had valuable experiences

14:53

. Giving back to the community are enriching

14:55

their families' lives In

14:58

Motherhood . You'll learn about the unique

15:00

circumstances that women with CHD

15:03

face on the road to Motherhood and

15:05

how their experiences in growing up with

15:07

CHD help them to advocate for their

15:09

loved ones and community . The

15:12

final chapter , facing my Mortality

15:15

, is a hard read , but so worth

15:17

it for the wisdom the contributors

15:19

in part Some of them have

15:21

sent past away . Chapter

15:24

5 . Service . If

15:27

you've read this book from the beginning , you may have

15:29

noticed that several of the essays

15:32

are about helping others . For

15:34

example , jason Crutchley volunteered

15:36

with the American Red Cross to repay

15:39

all the help he received as a child

15:41

, while Christie Silman became

15:43

a pediatric cardiologist within

15:45

the ICU to help the children with

15:47

CHD . These

15:50

stories showed that there were different ways

15:52

of giving back and that in giving

15:54

you can gain so much . For

15:57

example , you may have heard a saying that is

15:59

some variation of the

16:01

best way to help yourself is to help someone

16:03

else . This chapter expands

16:06

upon the theme of service . In

16:09

Monica's essay Jack's More

16:11

Than a Service Dog , the quest

16:13

for a service dog gives Monica a sense

16:15

of hope and purpose . Jack's

16:18

a loving home and both of them

16:20

loving companionship . Tracy

16:22

Grastie , victoria Scorgans

16:25

and Rosalyn Rivera are

16:27

all in the healthcare field , reciprocating

16:29

through their work . In her essay

16:32

Giving Back , tracy

16:34

describes how she had to stop wifeing as

16:36

an ICU nurse during the pandemic

16:38

and found herself in a different

16:40

caring role , helping her parents

16:42

, now aged in their 80s , as

16:45

they cared for her as a child . In

16:48

my career choice , victoria

16:50

talks about the loving guidance of mentors

16:52

which steered her towards a career

16:55

in healthcare administration rather

16:57

than the front line . Rosalyn's

17:00

essay Novic Cardiac

17:02

Alliance Trips to the Middle East and Eastern

17:04

Europe tells the story of

17:06

her journey from pediatric CHD

17:08

patient to pediatric CHD

17:10

nurse , traveling the world

17:13

to help heal young hearts . My

17:15

essay man Lighting as a CHD

17:18

is about a part-time job I

17:20

once had , volunteering for a medical school

17:22

program . I must

17:24

admit I am a bit in awe of my co-authors

17:27

in this chapter and of what they have achieved

17:29

. I didn't think I could

17:31

cut it as a doctor , nurse or other healthcare

17:33

professional . However , you

17:35

don't have to be a medical professional or emergency

17:38

worker to give back . Even

17:40

small gestures can make a big difference

17:42

to somebody's life Together

17:45

. These essays show that there are many

17:47

ways to give back to those in need and

17:49

, in turn , received .

17:52

Jack's More Than a Service Dog by

17:55

Monica A Mosse . Mid-morning

17:57

on January 3rd 2016,

18:00

. God answered my prayers , but in

18:02

a much bigger way than I imagined . I

18:04

was talking on Facebook Messenger when I

18:06

noticed I had one unread message

18:08

. At first glance I caught the words

18:10

Therapy Dogs and Louis

18:12

H Mosse . I stared at the

18:15

message again and saw a link to

18:17

check out Therapy Dogs . My

18:19

heart skipped with excitement at the possibility

18:21

of my dream finally coming true . If

18:24

Dad was serious about this , after

18:27

an intense internal debate on whether

18:29

I should inquire , I could no longer

18:31

stand a suspense . I had to know

18:33

for sure . Dad was sitting

18:35

in his recliner . When I calmly and nervously

18:37

asked Dad the message you sent

18:39

me , does that mean what I think it does

18:42

? Looking serious and not

18:44

saying a word he nodded yes . I

18:47

immediately became an emotional wreck

18:49

. My dream was finally coming

18:51

true . As soon as I composed myself

18:53

, I gave Dad a hug . Thank you

18:55

for making my dream come true , I said with a

18:57

lump in my throat and tears flowing down

18:59

my cheek . Still embracing

19:02

each other , dad suggested why don't

19:04

you do some research ? There may be some

19:06

applications to fill out . Thanks

19:08

, dad , I'm planning on it . Sitting

19:11

in the living room , I looked at the photo of

19:14

Levi . That was my screensaver . Levi

19:16

, I thought I love and miss you dearly

19:19

. You were the best cat anyone could

19:21

have asked for . I hope you will send me

19:23

your blessings as I search for a service

19:25

dog . I browsed the

19:27

Therapy Dogs website a bit . Before I

19:29

emailed explaining my situation

19:31

. They responded by telling me their

19:34

company trained dogs for people who need

19:36

them as emotional support . Therefore

19:38

, they could not help me and wished me the

19:40

best of luck in my search . I

19:42

thanked them and continued researching

19:45

. Over the next couple of days I

19:47

sent out numerous emails to Therapy and Service

19:49

Dog Organizations explaining my

19:51

urgent situation . One

19:53

by one , the replies arrived , rejection

19:56

after rejection . They

19:58

were the wrong company , required money

20:00

up front or had a two to four

20:02

year waiting period for a specially trained

20:04

dog . I could not wait that long

20:06

. I needed one right away . I'm

20:09

so depressed . I said to my mother

20:11

I don't want to wait two to four

20:13

years . That's too long . Maybe

20:16

I should adopt a small dog and train him myself

20:18

. Keep the faith , mom

20:20

said sympathetically . I am sure

20:22

God has something special planned . Why

20:24

don't you email the Milton Veterinary Hospital

20:27

? Maybe they can point you in the right direction

20:29

. I contacted the

20:31

vet and asked for their assistance . Tears

20:34

spilled down my cheeks while saying another

20:36

prayer for a service dog , unaware

20:38

that my life was about to change the

20:40

next morning , january 9th

20:43

. Hello , is this

20:45

Chico and Friends saving dogs ? Milton

20:48

Vet gave me your number . This is Anne

20:50

Mossy . I'm calling for my daughter , monica

20:52

. She is unable to hear on the phone

20:55

. I am lucky for information about

20:57

getting a service dog for her . She needs

20:59

a small dog because of her heart defect

21:01

. When I woke up , I was

21:03

shocked to hear Mom say Monica , you

21:05

have to check out Chico and Friends saving dogs

21:08

. You laid

21:10

it and , heart pounding , I checked out

21:12

the Facebook page . Browsing through the pictures

21:14

of dogs available for adoption , I

21:17

came across a picture of a two-year-old

21:19

dog named Jax and

21:21

instantly fell in love with him . Mom

21:24

, I am going to inquire about Jax

21:26

. Mom nodded in agreement

21:28

, shaking with excitement . I contacted

21:31

the owner via Facebook about

21:33

Jax . I told your mother

21:35

this little guy would be perfect for you . She replied

21:37

. Knowing this gave me goosebumps

21:39

. I knew God was giving me a sign

21:42

. I scheduled an appointment for the next

21:44

day , since there were three other people

21:46

interested in him . Thank you

21:48

for letting me meet with Jax tomorrow . I wrote

21:50

on Facebook Messenger . Lying

21:53

in bed that evening , I put my hands

21:55

together and prayed Dear God , please

21:57

help me make the right decision regarding Jax

22:00

. The next morning , mom and I

22:02

headed over to Chico and Friends to

22:04

meet Jax . We introduced

22:06

ourselves and anxiously waited for the employee

22:08

to bring Jax out . Here you go

22:11

, she said , placing Jax in my arms

22:13

. While holding him , I was

22:15

unsure if he was the right dog for

22:17

me . When he laid his head on my shoulder

22:19

, I had my answer Filled

22:21

with mixed happy emotions . I made my decision

22:24

and adopted a trembling two-year-old

22:27

Jax . Thank you God , I said

22:29

with tears sliding down my cheek . After

22:32

Jax settled in and we got to know each other

22:34

, it was time to begin the training process

22:37

. I searched online for a certified

22:39

dog trainer . Mom , I exclaimed

22:41

. I found a trainer . A couple

22:43

of weeks later , mary Ann came to my house

22:46

to meet Jax and me . She asked

22:48

me what I wanted Jax trained for . I

22:50

have a complex heart-lung defect and

22:52

occasionally wear oxygen . I told Mary

22:54

Ann I need Jax to comfort

22:56

me when I am distressed or sick . Also

22:59

, I am deaf and wear cochlear implants

23:01

. I want Jax to alert me when someone

23:04

rings the doorbell or walks in the house

23:06

. Mary Ann made notes

23:08

, then pulled out a training workbook and

23:10

pointed out the do's and don'ts . She

23:12

showed me how to train Jax . To alert me

23:14

when someone was at my house . You

23:17

need to have Jax leash tied to you

23:19

for the next month . That's the only

23:21

way he'll know that you are his owner . It'll

23:23

also help him learn about your special

23:26

health needs . Mary Ann told me Jax

23:29

was one step closer to becoming a service

23:31

dog . It was time to get him registered

23:34

. Monica mom said I am so

23:36

proud of the work you have done training Jax

23:38

. He seems so much more comfortable

23:40

with his job . His little blue

23:42

vest is so cute , beaming

23:44

with pride . I registered him online

23:46

and anxiously waited for his papers to arrive

23:49

in the mail . A week

23:51

later I received them . Look

23:53

, mom , I said upon opening the envelope

23:55

. Jax is officially a service

23:57

dog , mom , and I cheered

23:59

. Even though it was legitimate , it did

24:01

not feel 100% official until

24:04

Mary Ann finalized it . I

24:07

can't believe this is my fourth and final visit

24:09

. Mary Ann said to me Jax

24:11

has been doing great work with his training . I

24:13

am quite impressed . I

24:15

could not have done this without you . Thank

24:17

you , I said to Mary Ann as she left . Jax

24:21

was exceptional in his training . His

24:23

intuitiveness amazed me . One

24:25

day he followed me around and wouldn't

24:28

stop crying until I checked my blood sugar

24:30

. He senses my daily

24:32

battles and incessant pain

24:34

by sticking to my side . With

24:37

his help , although difficult at times

24:39

, I pushed through the rough days . He

24:42

knows what his vest means . It takes his job

24:44

seriously . While wearing it , once

24:46

it is off , his personality changes

24:48

from serious to playful . He knows

24:50

how to keep me laughing . Jax's

24:53

enthusiasm and zest for life are infectious

24:55

. He is truly my kindred spirit

24:58

. We do not get to choose what

25:00

happens to us , but we do get to

25:02

choose how it shapes us . What

25:04

is life all about for Jax and me

25:06

? It is about the hope that exists

25:08

beyond the pain and a journey I

25:10

never have to make alone . Mononkhamasi

25:14

was born on September 6th 1984

25:17

with Trunkas Autiriosus , type

25:19

2 , along with a host of other cardiac

25:21

and pulmonary conditions . She

25:24

lives in Vermont with her fur baby Jax

25:26

, a Chaiweenie dog who is her pride

25:28

and joy . She is an avid

25:30

reader , enjoys stewing , cross-stitch

25:32

and spending time with her friends and family

25:34

, especially her two nephews and

25:37

her niece .

25:40

Giving Back by Tracy Grasty

25:42

. My temperature

25:44

wouldn't go down . Mum

25:47

and I were in the emergency room ER

25:49

for the third time . My

25:51

mum was yelling at the doctors because they

25:53

thought I had the flu and gave me a shot

25:56

that didn't work . My fever

25:58

was up to 104 degrees Fahrenheit

26:00

. Mum held my

26:02

hand and reassured me all would be okay

26:05

. I remember being so

26:07

scared because the doctors couldn't help

26:09

me . Then

26:11

Superwoman showed up , a

26:13

beautiful black woman , pediatric

26:15

cardiologist . She

26:17

touched my hand and reassured me and

26:19

my mother . I'm going to

26:21

find out what's going on , she

26:23

said . She ran tests

26:25

and discovered I had endocarditis

26:28

. I was eleven years old

26:30

. I had to be admitted

26:32

into the hospital for one month on IV

26:34

penicillin . As a child

26:37

it felt like forever . I knew

26:39

about hospitals . I

26:41

was born with tricuspidotresia , ta

26:44

, with hyperplastic right

26:46

heart syndrome , hrhs

26:48

. By the time I was eleven

26:50

years old I had had two heart

26:52

surgeries . One was a Blalock

26:55

Tau , sig Thomas shunt at fifteen

26:57

months and one was the Waterston

27:00

shunt at four and a half years old

27:02

. I remember little about

27:04

these surgeries , except after the Waterston

27:07

shunt . I remember going back

27:09

to the hospital to get my stitches out

27:11

. In a cold room they

27:13

took a set of pliers and removed them . Ouch

27:16

, I said repeatedly . It

27:19

seemed as though I had a million stitches

27:21

. During my hospital

27:24

stay , mum visited every

27:26

day after teaching school , before going

27:28

home to fix dinner . She

27:30

sat with me as I ate nasty hospital

27:32

food and complained about being there . Mum

27:35

held my hand and comforted me . I

27:38

anticipated mum's daily visit

27:40

and it always thrilled me

27:42

. My dad , sister and brother

27:44

would sometimes come in the evening . Thanks

27:48

for coming , I said to everyone

27:50

. They would leave me and my heart

27:52

would sink every time we said goodbye

27:54

. That year I also started

27:56

wearing a brace for scoliosis . I

27:59

remember the pain of how it squeezed my

28:01

body . I could hardly breathe

28:03

or eat . It went from

28:05

my chin to the bottom of my butt . Kids

28:08

teased me because my butt was flat . They

28:11

would also trip me in the whole land laugh

28:13

because it was hard for me to look down

28:15

. My clothes tore from

28:17

the nails and I was never comfortable

28:19

, especially in a chair , unless

28:22

it was upright , with no cushion . After

28:25

three months mum would take me for another

28:27

brace adjustment because I had grown . When

28:30

the brace would draw tighter I would feel like

28:32

my body was in a vice and it was hard

28:34

to breathe . I had back

28:36

surgery at 17 years when they

28:38

placed a Harrington rod inside my back

28:41

, straightening my spine . I

28:43

was free . In 1999

28:46

I taught school and in the summer I taught

28:49

at a daycare . We all

28:51

went to an indoor play park and the

28:53

children two to four years old

28:55

were playing on the slide all by themselves

28:57

. I thought , since I was

29:00

small , I could get on the slide too

29:02

to supervise them more closely

29:04

. Another co-worker

29:06

and a friend who was small like me also

29:08

got on the slide . I thought

29:10

surely if this 50 year

29:12

old lady can get on the slide , so

29:15

can I . The slide

29:17

was a tube and was so fast I couldn't

29:19

stop and there was nothing to hold on to . I

29:22

wound around fast and furious . I

29:25

reached the bottom Ow . One

29:27

leg got caught on the mat and I flew forward

29:30

. The other teachers took the kids

29:32

away so they wouldn't get scared when the ambulance

29:34

came and took me and my broken tibia

29:37

and fibula away . After

29:40

surgery my parents came from Detroit

29:42

to Maryland take care of me . After

29:45

a few weeks Dad went home but

29:47

Mum stagged . We went

29:49

back to my studio apartment . Mum

29:52

cooked and cleaned . I

29:54

had a rod placed so there was no plaster

29:57

cast but I had a boot

29:59

to wear your leg looks

30:01

like it was in a fight and lost . Mum

30:03

said there were bruises

30:05

everywhere . Physical therapy preserved

30:08

both legs . Mum stayed

30:10

until I could take care of myself . I

30:14

was in college when I asked my doctor about

30:16

how long I would live . He replaced

30:19

my old doctor , who retired . Dr

30:21

Ross was straightforward you

30:24

won't live past 26 years old

30:26

unless you have a surgery called the Fontan

30:29

. He said I was 22

30:31

years old . Mum started crying

30:34

. I think that is why my

30:36

old doctor would hedge and never say

30:38

how I really was to him . He

30:41

said I expect your outlive

30:43

me when he was in his late 60s

30:45

or early 70s . I

30:47

came out of college for the Fontan

30:49

. All went swimmingly until

30:51

I felt like I couldn't breathe . I

30:54

kept calling the nurses and doctors

30:56

. I had so many tests , but

30:58

they couldn't find evidence of my decline

31:00

on any tests . Meanwhile

31:03

I asked for more oxygen , which

31:05

they reluctantly gave me . One

31:07

night I woke up and every staff

31:09

member was around my bed . Tracy

31:12

, you look grey . We need to intubate

31:15

you . I was so scared . The

31:18

next thing I knew I had a tube down my

31:20

throat . I don't know what hurt

31:22

more the tube or my newly

31:24

operated arm chest . I

31:26

could hear my mum yelling from the hallway

31:29

at all the doctors and nurses for not believing

31:31

me when I said I was feeling worse and

31:33

having trouble breathing . My

31:36

mum was hot . That little black

31:38

woman telling off every doctor and nurse

31:40

she could find must have been something to

31:42

behold . The intensive

31:44

care unit ICU allowed

31:47

15 minute visits every hour

31:49

. I looked forward to mum

31:51

and dad visiting me . The ICU

31:53

was cold and I stayed in pain

31:56

. Morphine , I said

31:58

to the nurse All I wanted was

32:00

sleep . Sometimes dad

32:02

couldn't come , but mum was always there

32:04

. A few decades later

32:06

, I felt my heart beat fast and weird

32:08

. By charting as a pediatric cardiac

32:11

ICU nurse , I

32:13

put myself on the heart monitor and

32:15

couldn't believe my eyes . My

32:17

heart was beating 250 beats

32:19

per minute . I was in atrial

32:21

flutter . They put me on a beta

32:23

block of medication that dropped my heart

32:25

rate to about 35 beats per minute

32:28

. I could barely get out of

32:30

the bed . I had no energy . I

32:32

needed an ablation , a procedure

32:34

where they burn away the areas of the

32:36

heart that cause the arrhythmias . Before

32:39

my ablation I heard a knock on my house

32:42

door Mum , dad

32:44

. They came to take care of me until

32:46

I had my procedure . A sense

32:48

of relief washed over me . Years

32:51

passed and I visited home more often

32:53

because my parents became too old to travel

32:56

. One day mum

32:58

and I went shopping and as we prepared to

33:00

leave the mall , mum couldn't remember

33:02

which door we came in . I

33:05

recognised a store and a pillar , so

33:07

I directed us accordingly . Then

33:10

mum couldn't find her car . This

33:13

never happened . Luckily

33:15

, I saw a glimpse of a light blue car

33:17

and went over to it . It was mum's

33:19

car . When mum couldn't

33:21

find her way home , I knew something

33:23

was wrong . My phone GPS

33:26

got us home . Tracy

33:28

. Dad said in one of our regular calls

33:31

Mum isn't paying her bills

33:33

and her phone got cut off . I

33:35

did , too , pay them , mum said

33:37

. I gave them $100 in cash

33:40

and I don't owe anyone anything . Mum's

33:43

credit score was $850

33:46

. She was never late with her bills . I

33:49

realised I needed to help mum and dad . Mum

33:52

will be 87 later this year and

33:54

dad will be 90 . I

33:56

travelled from California to Detroit

33:58

, michigan , at least once a month

34:00

. When the pandemic happened , I was

34:02

unable to work my regular job as a

34:04

pediatric cardiac ICU

34:06

RN . Since they

34:08

allowed me to work remotely , I

34:11

took my computer and stayed in Detroit

34:13

for several months . Mum

34:16

has developed Alzheimer's dementia

34:18

and she is progressively worsening

34:20

. She refuses to believe she

34:22

has Alzheimer's and will not allow me

34:25

or anyone to bring a care provider

34:27

, housekeeper or anyone

34:29

in the house . It is part

34:31

of the disease . When

34:33

I am home , I do what I can . Dad

34:36

cleans , cooks and does laundry . Unfortunately

34:40

, my sister and brother don't come

34:42

home to help . They refuse to

34:44

come home . During the pandemic , even

34:46

though I begged them to , I

34:49

wore full personal protective equipment

34:51

a Tyvek suit with a hood

34:53

, a hair net , booties , mask

34:55

and shield and travelled

34:57

in first class on a direct Delta

35:00

flight because first class passengers

35:02

sat alone . Mum assigned

35:04

guardianship to me . I

35:06

started taking care of the bills and paying

35:08

more attention to her medical issues

35:10

. Although financially and

35:12

logistically difficult , I am

35:15

glad I could do this for her . While

35:17

I was in Detroit , I got her a mammogram

35:20

on blood pressure medication

35:22

and a gastroenterologist

35:24

for her gastroesophageal

35:27

reflux disease . I

35:29

helped dad get his correct medications

35:31

appointments and followed both

35:33

of their health closely . I

35:36

still do . Before I left

35:38

, I made sure they got their COVID vaccinations

35:40

here . Mum , I

35:43

said while helping her dress for her podiatry

35:45

appointment you can't wear a

35:47

slip and pants . That's where this

35:49

pretty shirt . Let me help you

35:51

with those buttons . It looks like your arthritis

35:54

is bad . Today she

35:56

keeps hiding her keys and mail . Dad

35:59

said I do not . Mum

36:01

said you keep taking my things

36:04

. We both know this

36:06

is part of the progression of mum's illness

36:08

. It's time for you to have

36:10

a nurse and physical therapy . The doctor

36:12

said at one of mum's appointments I

36:15

don't need strangers in my home , I'm

36:17

fine , said mum . I

36:19

want to help both my parents , especially

36:22

my mum , not only because they are my

36:24

parents , but because they always cared

36:26

for me when I had CHD problems

36:28

. Prayerfully I

36:30

can give mum and dad back a morsel of what

36:32

they have given me . Tracy

36:36

Renee Grasty is the youngest of three

36:39

and was raised in Detroit , michigan

36:41

. Tracy was born on September 23

36:43

, 1966 , with

36:46

tricuspidotresia , aka

36:48

hyperplastic right heart syndrome or

36:50

single ventricle . While

36:53

Tracy is single without children , she

36:55

does have a pure white pet rabbit named

36:57

Snowball , a bird

36:59

lover . Tracy also has a pineapple

37:02

conure named Sunburst because

37:04

of her vibrant colors . In

37:07

the past Tracy loved to travel

37:09

and go to live concerts . She

37:12

followed her favorite singer , l

37:14

D Barge , around the country , attending

37:16

all of his concerts .

37:23

Heart to Heart with Anna is a presentation of Hearts

37:25

Unite the Globe and is part of the Hug

37:27

Podcast Network . Hearts

37:29

Unite the Globe is a non-profit organization

37:31

devoted to providing resources to the congenital

37:34

heart defect community to uplift , empower

37:36

and enrich the lives of our community members

37:39

. If you would like access to free

37:41

resources pertaining to the CHD community

37:43

, please visit our website at

37:45

wwwcongenitalheartdefectscom

37:48

for information about CHD , the

37:50

hospitals that treat children with CHD , summer

37:53

camps for CHD survivors and much

37:55

, much more .

37:57

My Career Choice by Victoria Skoggins

37:59

. Victoria , have you thought about your

38:01

career ? I remember my cardiologist

38:04

, dr Mullen , asking me during a routine

38:06

follow-up appointment Because

38:10

of your trichuspid atresia and other heart defects , you will have a tough time getting

38:12

health insurance . It is very important

38:14

you have insurance that has good coverage

38:17

and you can't ever let your policy

38:19

drop . At 16

38:21

, this was not a conversation I was ready for

38:23

or even wanted to think about . I

38:25

always knew that insurance was going to be

38:28

an important aspect when choosing a career

38:30

. Mom would always say you

38:32

need good insurance . Whenever I would talk

38:34

about the future From an early

38:36

age , my parents pediatrician and

38:39

cardiologist always reinforced

38:41

that I would need good health insurance throughout

38:43

my life and a career that fit my

38:45

physical abilities . I had

38:47

an inkling I wanted to work in the medical field

38:49

. I wanted to be a doctor , but

38:52

my fear of needles prevented such a vocation . With

38:55

my frequent visits to my pediatrician

38:57

, dr Tallin's office , I became

39:00

a regular there and even had my own room . My

39:03

pediatrician became a family friend

39:05

and mentor . Knowing my fear

39:07

of needles and that I had an interest

39:09

in a career in healthcare , he asked

39:11

have you ever thought about going into healthcare

39:14

administration ? Oh

39:16

, I didn't even know that was an option . He

39:19

told me to set up a meeting with their office manager

39:21

and of course I did . I ended up

39:23

working in my pediatrician's office during

39:25

summer vacation and saw firsthand

39:27

the duties of an office manager . I

39:30

decided I was going to be in healthcare

39:32

administration Now . I sought colleges

39:35

with the healthcare administration program

39:37

. Unfortunately

39:39

, I did not find a college that specifically

39:41

had healthcare administration as a major

39:43

, so I ended up getting my bachelor's

39:46

in business administration . During

39:48

summer vacations I returned to

39:50

my small town and , because my pediatrician

39:53

knew that chief executive officer

39:55

CEO of our local hospital

39:57

, I was able to have a one-on-one meeting

40:00

with the CEO to further discuss pursuing

40:02

healthcare administration . He

40:05

offered me summer jobs to get hands-on

40:07

experience and learn about the administrative

40:09

process of running a hospital While

40:12

earning my undergraduate degree in business . I

40:15

signed up for the only healthcare administration

40:17

class that was offered . The professor

40:19

of this class retired from a healthcare

40:21

organization as CEO . He

40:24

was someone I needed to talk to and

40:26

get more insight into this career path

40:28

I had chosen . Victoria

40:31

. If you want to get into healthcare administration

40:33

, you need to think about getting your master's

40:36

degree , and my professor suggested

40:38

some universities that had great programs . I

40:40

took his advice and pursued a master's

40:42

degree in healthcare administration

40:45

. During graduate school

40:47

I was in a work study program with

40:49

the program director , dr Mosley . His

40:52

background was in hospital administration

40:54

and his father had been one of the first

40:56

hospital administrators for the Veterans

40:58

Administration VA . With

41:01

a year left until graduation , he asked

41:04

me what part of healthcare management

41:06

do you want to go into ? Ceo

41:08

of a children's hospital ? Knowing

41:11

my medical history , he said you should

41:13

look into veteran affairs . They

41:15

have great benefits and good job security

41:18

. Since I had multiple

41:20

open heart surgeries as a child , I

41:22

pictured myself working in a children's

41:24

hospital . Dr Mosley offered

41:26

some good points I would need to consider

41:28

when picking my first job . Perhaps

41:30

his greatest contribution to my career

41:32

decision was recommending that I

41:34

consider working for the Veterans Administration

41:37

. As I got closer to

41:39

graduation he asked have you

41:41

applied for any of the VA administrative

41:43

fellowships ? You know there are few

41:45

offered throughout the country and they are very

41:47

competitive . A few

41:49

days before my final presentation

41:51

he asked have you heard from any of

41:54

the fellowships you applied for ? Yes

41:56

, but I haven't received an offer yet . He

41:58

looked disappointed but said there's still

42:01

time for the facilities to select their

42:03

administrative fellows . The

42:05

next day I got the call I was

42:07

being offered an administrative fellowship On

42:10

a final presentation day . Dr Mosley

42:12

peeked his head into my office . It's

42:14

time for your presentation . Are you ready

42:17

? Yes , after

42:19

my final presentation , with most of

42:21

the professors sitting there , dr Mosley

42:23

asked did you get any offers ? Actually

42:26

, I got an offer yesterday with

42:28

the VA for a healthcare administration

42:30

fellowship and I have accepted the offer

42:33

. I have been with the VA

42:35

for over 14 years and it has been

42:37

the best career decision . Over

42:39

the years , I have worked in three VAs in

42:41

three different cities . I

42:43

have very good benefits that generously

42:45

cover my increasing medical care

42:47

costs . While healthcare insurance

42:50

was always a crucial factor in choosing

42:52

a career path , I have found a career

42:54

that gives me satisfaction . Every day I

42:57

get to help veterans and having great

42:59

health insurance is just a bonus . From

43:02

Dr Mollins to Dr Mosley and everyone

43:04

in between , I have had many significant

43:07

mentors who influenced me and

43:09

guided me to a successful healthcare

43:11

career . Victoria

43:13

Rose Goggins was born in 1983

43:16

with tricuspid atresia . Her

43:18

heart defects were not diagnosed until

43:21

she was one month old . When she was

43:23

rushed to Texas Children's Hospital

43:25

for Surgery In 1989

43:28

, she had the fontan , realizing

43:30

that her heart defects needed more publicity

43:33

. In 2014

43:35

, she started her Wear Purple for CHD

43:37

Awareness event on Facebook . Although

43:40

originally from a small town in Texas

43:42

, she now calls Arizona home . She

43:45

shares her home with her dog and enjoys

43:47

working her sense business when

43:50

she is out , working her full-time job at the VA

43:52

hospital as a hospital administrator

43:54

.

43:56

Mern Lighting as a CHD-er by

43:58

Megan Tones . From the

44:00

hallway I hear Dr Smith lecturing

44:02

the medical students . When

44:04

you are taking a patient history for your

44:06

objective structured clinical exam

44:08

, you don't have much time , so

44:10

it's all about pattern recognition . Out

44:14

of breath , from walking up the hill I wait

44:16

the doorway . You need to look

44:18

for patterns of symptoms to clue you in

44:20

on what might be going on with the patient

44:22

. Ah , megan , dr

44:24

Smith smiles . Take a seat

44:27

. We were just going to start introductions

44:29

. As we go around the

44:31

room I learn the students are from

44:33

different corners of the world . How

44:36

exciting it must be to move to another country

44:38

to study and work . On

44:40

my turn , I try to sound interesting

44:42

. My name is Megan . I

44:45

was born here in Brisbane and work as

44:47

a rare disease registry curator and

44:49

researcher . I enjoy

44:51

travelling and go to Japan nearly every

44:53

year . Megan is here

44:55

. As one of our patient volunteers said

44:57

, dr Smith , she's going to go back

45:00

a few years to when she was 22

45:02

and first presented to her doctor with

45:04

a new medical issue . Would

45:06

anybody like to volunteer as Megan's

45:08

doctor ? They look at me

45:10

already turning over facts in

45:13

their minds Young female

45:15

, working , travelling and

45:17

considering possibilities . Finally

45:20

, student volunteers and the game

45:22

begins . My task to

45:25

reveal as little as possible about my medical

45:27

history . I even covered

45:29

my scar and painted my lips . So

45:32

what brings you here today I

45:35

want to say well , a little

45:37

while back , my pediatric cardiologist

45:39

told me that my heart has been stable for years

45:41

and functioning like normal . But I

45:43

don't believe him because I still take the jocks

45:45

in and my heart randomly races and I sleep

45:47

all the time and I get puffed out carrying

45:50

my groceries home . But

45:52

I am also trying to publish from my honours

45:54

and get my PhD and write a book and

45:56

well , it's like

45:58

I'm trying to live my whole life in a few years

46:00

, but I can't . Instead

46:03

, I tell them I'm 22 and I just

46:06

moved out of home with my husband and daughter . I

46:08

work at a university and will start my

46:11

PhD soon . When

46:13

I get home , I just want to sleep

46:15

. Sometimes I wake up and my face

46:17

is all puffy like the moon , and

46:20

when I carry my groceries home I have

46:22

to stop walking up the hill . Sometimes

46:24

my heart beats really fast for no reason

46:27

. Usually they

46:29

start down a line of questioning for anemia

46:31

, pregnancy or mental illness . Sometimes

46:35

they raise their eyebrows at the moon face

46:37

thing but , like me , don't realise

46:39

that it's water retention . Heart

46:41

failure from congenital heart defects

46:43

causes fluid to build up in the darned displaces

46:46

. Most of the

46:48

time . The student doctor eventually arrives

46:51

at heart failure . One even

46:53

asked if I had a history of heart disease

46:55

and I played dumb Gee

46:57

. I had a few surgeries as a kid , but

46:59

I'm not really sure what they were . And

47:02

I still take these little white pills . Guess

47:04

I should read the box , huh ? Once

47:07

class has discussed my possible diagnoses

47:10

, dr Smith turns to me . So

47:13

, megan , do you want to tell us what really

47:15

happened ? I'm

47:17

back , squinting at the bright lights

47:19

of the consulting room at the university's

47:22

general practice . Aside

47:24

from what I told the student doctors , I

47:26

also said my heart feels

47:28

really heavy and dull , like somebody

47:30

replaced it with a brick or wrapped it in a wet

47:32

towel . He raised his

47:35

eyebrows . I'll send you off for some

47:37

blood tests . There are a few rare

47:39

things I'll back to roll out . I'm

47:42

not your typical student patient , am I

47:44

? I'm more like somebody you might

47:46

see on that show house . The

47:48

student doctor nodded . I don't

47:51

see people like you every day . At

47:54

the hospital , the gastroenterologist

47:56

studied my liver ultrasound . Your

47:59

liver is congested , with blood flowing back

48:02

from the right side of your heart . Finally

48:05

, an answer to why I struggled to keep

48:07

up with the other students and missed my school

48:09

bus nearly every day and

48:11

, when I got older , wanted to sleep

48:13

all the time . I took the results

48:15

with me to the cardiologist . Even

48:18

then , as I sat in his dingy office

48:20

with my liver results , he performed

48:22

an echocardiogram and said Sometimes

48:25

we see liver problems in fontan patients

48:28

, but not in patients with ventricular

48:30

septal defect , vst . I

48:33

don't think your heart would be the cause . I

48:36

couldn't believe it . I felt

48:38

like he was treating me like the old maid

48:40

in a card game . But he did

48:42

help me , even though I had to take the long

48:44

way . We could do a catheter

48:46

and a stress echo to check your heart pressures

48:49

and how your heart works when exercising

48:51

. As the classical

48:53

music played , my cardiologist , surrounded

48:55

by a registrar and a team of scientists

48:58

, pressed a needle the size

49:00

of a pen cap into my femoral artery

49:02

. Thanks to a local

49:04

anesthetic , I felt only a curious

49:06

pressure , the wires bumping

49:09

into the sides of my arteries like

49:11

errant guppies lost on the weight of

49:13

my heart . I thought of strange

49:15

science fiction and horror films of the 70s

49:17

and 80s , tony Scott's

49:20

the Hunger at the forefront of my mind

49:22

Maybe it was the Hungarian

49:24

accent of the registrar . I

49:26

watched my heart on the monitor as the scientists

49:29

read out numbers . It was almost

49:31

hypnotic , except when my heart

49:33

rate spiked a couple of times . The

49:36

procedures over . My cardiologist

49:39

said calmly we need to remove

49:41

the wires now . I

49:43

looked down as the doctors put a towel over

49:45

the needle . What happened next was

49:47

a coordinated effort . As

49:50

my cardiologist removed the needle , the

49:52

younger registrar pushed down on the wound

49:54

with all his strengths . Even

49:57

so , the blood flowed like a hose on

49:59

full power . I stopped looking

50:01

but felt the towel growing heavier with

50:03

me . My lower

50:05

body felt like it was unraveling , my feet

50:07

detaching , floating away like

50:09

smoke . I thought of my

50:11

blood like a magician's silly strength squirting

50:14

from the cuff of a magic jacket . How

50:17

absurd life is . This

50:19

isn't as much fun as it looks on true blood

50:21

when we descend . How

50:23

Okay . Somebody

50:26

put a hand on my shoulder and a blanket over

50:28

my shaking body . We stopped

50:30

the bleeding . It

50:32

surprised me that I was able to stay on the

50:34

treadmill for eleven minutes . For

50:37

the first few minutes I chatted with the cardiac

50:39

scientists . What do you think

50:41

of house ? Terrible show

50:43

. It makes people think that the crazier

50:46

your doctor is , the better . My

50:48

cardiologist called me back a few weeks

50:51

later . Your mitral valve is

50:53

leaking quite a lot when you exercise

50:55

. We're going to need to repair

50:57

it . I had a huge mortgage

50:59

, bore new rescue dogs and

51:01

was halfway through my PhD . Now

51:04

is not the time for surgery . Can

51:07

I have it two years from now ? I

51:09

don't think you've got two years . He

51:12

was right about that . Soon

51:14

I was out of breath chopping a tomato

51:16

or tying my shoes . My

51:19

dogs became my masters . My

51:21

husband watched helplessly as I lay next

51:24

to the window staring at the world

51:26

I was no longer part of . Finally

51:29

, in the hospital , a new congenital cardiology

51:31

team prescribed metoprolol and

51:33

furosamide . These

51:36

were , of course , heart failure medications

51:38

. Only nobody wanted to come

51:40

out and say I had heart failure . Instead

51:43

, I was an adult with heart

51:45

disease . On the

51:47

third day in hospital I woke to see

51:49

my surgeon sitting by the window , bathed

51:52

in the early morning sunlight , like an angel

51:54

. We can do the surgery

51:56

in five weeks . The

51:59

last time I volunteered , a student

52:01

asked me a question I had not heard before

52:04

. So what happened after

52:06

the surgery ? Do you feel better

52:08

now ? I think I

52:10

do . I started Not

52:12

better , but more stable . The

52:15

surgeon was very good and saved my valve

52:17

, but I still have heart failure and arrhythmias

52:20

. One time I ran into

52:22

my cardiologist in the car park and

52:24

I asked him why he told me not to

52:26

come back as an adult and

52:28

why he didn't warn me about what could

52:31

happen later in life . The

52:33

student doctors leaned in . What

52:35

did he say , asked Dr Smith

52:37

? He said years ago

52:39

we felt like if we got you through high school

52:42

, our job was done and

52:44

I thought it would be pessimistic if

52:46

we told you all those things and

52:49

that you might give up on yourself . It's

52:51

hard to know what to tell patients . There

52:54

you have it said , dr Smith . Sometimes

52:58

the patient doesn't fit an expected pattern

53:00

or the pattern might still be in discovery

53:02

. Adult congenital cardiology

53:05

was a very new field at the time of Megan's

53:07

case . As the lecture resumes

53:10

, I leave from knowing they are a little

53:12

wiser about adult congenital heart

53:14

disease . Maybe I will see

53:16

one of them again in a consult room or

53:19

hospital hallway or

53:21

at my bedside and feel that I am in safe

53:23

hands . Megan

53:26

Tones was born in Brisbane , australia

53:29

, in 1983 . Her

53:31

heart condition was discovered at six

53:33

days of age , but she was

53:35

not formally diagnosed with a large

53:37

ventricular septal defect , vsd

53:40

, untrubbed , two years of age

53:42

. She has had four heart

53:44

surgeries between the ages of four

53:46

months and 25 years . She

53:49

has worked on a range of research projects

53:51

in the area of disabilities , education

53:54

and health and specializes

53:57

in research methodology . In

53:59

her spare time she enjoys helping the

54:01

CHD community .

54:04

Novic Cardiac Alliance trips to the

54:06

Middle East and Eastern Europe by

54:08

Rosalind Rivera . As

54:11

the city-wide speakers , playing the call

54:13

to prayer in Arabic awakened me , I

54:16

find myself yet again reflecting

54:18

on how my life has led me to be in Iraq , having

54:21

grown up in a suburb of Los Angeles

54:23

and attending private Catholic school

54:25

my entire life . I look back

54:28

and think that I actually grew up sheltered

54:30

from the real world . This was

54:32

likely because my parents' desire to keep

54:34

me safe from harm . My parents

54:36

raised me with fear for my health . Like

54:39

any parent who heard the words congenital

54:41

heart defect , my

54:44

parents took me home , their newborn baby

54:46

girl who was just diagnosed with

54:48

congenital heart defects . Their own

54:50

hearts shattered , their minds

54:52

confused , their hopes in

54:54

limbo . Despite my

54:56

unknown future , they raised me as

54:59

they would any child , but with a

55:01

tremendous secret . They didn't

55:03

share my diagnosis with my family

55:05

. My grandmother cared for me

55:07

, not knowing that my heart was literally

55:09

a ticking time bomb , lovingly

55:12

giving me sugar water when I had a boo-boo

55:14

. I still am amazed that my

55:16

parents kept this secret , wanting

55:18

family to treat me like a normal child

55:20

. It wasn't until I fell into

55:22

heart failure at age three that

55:25

surgeons touched my heart to repair

55:27

it . From this moment , my

55:29

heart became the focus . After

55:32

my second open heart surgery at age 10

55:35

, I knew I wanted to be a pediatric

55:37

nurse . When I grew up , even

55:39

with my sometimes failing heart , there

55:42

was nothing stopping me . Here

55:44

I am as a pediatric cardiac

55:46

nurse , working alongside an

55:48

international medical team to provide

55:51

free cardiac surgery to

55:53

children in the developing world . When

55:56

I graduated nursing school at 21

55:58

, I did not envision that my future

56:01

would lead me to a country where the language

56:03

and culture were extremely foreign

56:05

. This humbling

56:07

life reflection is cut short as

56:09

a phone rings in my hotel room Good

56:12

morning , my father said . As I answered

56:14

the phone Instantly , I am

56:16

in shock and awe , a state of

56:18

joy that only my dad's voice could produce

56:21

. He somehow figured out how

56:23

to call my hotel in Iraq from California

56:25

. Hearing him express how

56:27

proud he was of me for having the courage

56:29

and determination to travel to Iraq

56:32

to provide my nursing expertise

56:34

words spoken from halfway

56:36

across the world made my heart

56:38

so full of love . As

56:40

my career as a pediatric cardiac

56:42

nurse advanced , I recognized

56:45

that congenital heart disease spans

56:47

the world , regardless of race , culture

56:49

, religion , politics or economic

56:51

status . It became

56:53

my sole purpose , my passion

56:56

to help heal children worldwide

56:59

, children with CHD just

57:01

like me . Not only these

57:03

children with special hearts , but also their parents

57:05

and families , just as mine were

57:08

cared for . Throughout my childhood , my

57:10

dad was my ultimate supporter , encouraging

57:13

me when I told him I was leaving California

57:15

to start travel nursing across the USA

57:17

, crying tears of joy and

57:19

probably fear when I told him

57:21

I was now taking my work overseas . Over

57:25

the past 10 years , I have taken part in

57:27

medical mission trips to developing countries

57:29

such as Iraq , dominican

57:31

Republic , libya , ukraine

57:34

, russia , iran and Ecuador

57:36

. Novic Cardiac Alliance

57:38

provides free , life-saving cardiac surgery

57:40

to children with CHD and

57:42

medical education to local

57:45

teams so that they can become

57:47

sustainable programs , being

57:49

spent a total of over 6 months in Ukraine

57:51

and Libya , places I barely remember

57:54

learning about in school and where I

57:56

didn't know a single word of the language

57:58

. I now know these places so

58:00

well that I could take public transportation

58:02

, and the medical teams are my friends

58:04

who keep a small part of my heart . As

58:07

much as I may have taught the local teams

58:09

, I learned so much more about the world

58:11

, about language , religion , culture

58:14

and hope . I have followed

58:16

my heart's desires quite literally across

58:18

the globe . As I prepare

58:20

for my shift in the Iraqi hospital

58:23

, I tie my hair up and put

58:25

on a scarf to cover it out of respect

58:27

. Looking into the mirror

58:29

, I notice the faint line of my chest

58:31

scar and smile Throughout

58:33

my travels . The one undeniable

58:35

thing is that a smile translates

58:37

in every language . There

58:40

are numerous remarkable memories ingrained

58:42

in my brain A once blue-lip

58:45

child walking out of the hospital with

58:47

a beautiful healing scar on their chest

58:49

and a new hope for life . A

58:51

grateful parent repeatedly telling me

58:53

thank you in their native language . The

58:56

nurses I've taught CPR to performing

58:59

these skills to save a child's life . A

59:02

mother holding her baby in the ICU

59:04

, scattered with lines and tubes

59:06

, noticing my chest scar and

59:09

realizing that there was hope for her baby's

59:11

future . I believe

59:13

my heart desired these experiences

59:15

to feel whole and I will forever

59:18

be grateful for being born with CHD

59:20

. Rosalind

59:22

Riviera BSN RN , cpn

59:25

, bc , was born July

59:27

10th 1983 in

59:29

Los Angeles , california , with partial

59:31

AV canal defect and she had

59:34

two surgeries . In childhood , rosalind

59:37

CHD led her to become a pediatric

59:39

cardiac nurse . As a nurse , she

59:41

has worked in 15 US cities

59:43

and 7 developing countries

59:45

. She enjoys teaching patients

59:47

and families about their heart conditions

59:50

, especially helping her patients learn

59:52

to take ownership of their health . Rosalind's

59:55

father was diagnosed with CHD at 57

59:58

and unfortunately passed away from

1:00:00

complications related to a CHD

1:00:03

surgery in 2016

1:00:05

. Rosalind volunteers

1:00:07

with several CHD organizations Camp

1:00:10

Del Corazon , providing year round opportunities

1:00:12

for children and young adults with CHD

1:00:14

. A CHA as a peer

1:00:16

mentor , conquering CHD

1:00:19

as a guest blogger , and Hearts Unite

1:00:21

the Globe as a medical advisory board member

1:00:23

. In her free time , rosalind

1:00:25

enjoys camping and hiking with her

1:00:27

husband , michael , who is a heart transplant

1:00:30

recipient , and their two dogs . This

1:00:33

concludes this episode of

1:00:35

Heart to Heart with Anna . I hope you're enjoying

1:00:37

listening to Meagan Tones

1:00:40

and me . Read the heart of a

1:00:42

heart warrior , volume 2

1:00:44

, endurance . We

1:00:46

are starting a brand new book

1:00:48

study for this volume

1:00:51

. It meets on Thursdays

1:00:53

at 5 pm

1:00:56

, usa central time . We

1:00:58

only meet for one hour . It's

1:01:00

kind of like a book club for the CHD

1:01:02

community , but we specifically talk

1:01:05

about the topics for the essays

1:01:07

that we read for that week . Each week we're

1:01:09

going over a different chapter and in the fourth

1:01:11

week we play a fun jeopardy game where

1:01:14

we go over what we might have learned

1:01:16

from the book . It's

1:01:18

a lot of fun . I hope you'll join us . You

1:01:21

can go to babyheartspresscom to read

1:01:23

more about the book studies and to get a ticket

1:01:25

to join us . I am limiting

1:01:27

it to 12 participants so

1:01:29

all of us have an opportunity to share our

1:01:31

own experiences and stories . Have

1:01:35

a great week , talk to you next week and

1:01:37

remember my friends , you are not alone

1:01:40

.

1:01:41

Thank you again for joining us this week . We

1:01:43

hope you have become inspired and empowered

1:01:45

to become an advocate for the congenital

1:01:47

heart community . Heart to Heart with Anna

1:01:50

, with your host , anna Jaworski , can be

1:01:52

heard at any time , wherever you get your

1:01:54

podcasts . A new episode is released

1:01:56

every Tuesday from Noon Eastern Time

1:01:58

.