0:46

When we started the adoption process . We

0:48

have to get a home study . So anyone

0:51

who's looking for adoption and doing a home study

0:53

, you have to be honest about your heart condition

0:55

. No lying , you have

0:57

to be honest .

0:59

Welcome to Heart to Heart with Anna . I

1:01

am Anna Jaworski and your host . I

1:03

am also a heart mom to an adult who

1:05

was born with a single vegetable heart and

1:07

who is 29 years old . That's the reason

1:10

why I am the host of this podcast . With

1:12

me today is a dear friend , megan Hauke . Megan

1:15

and I met years ago and it seemed like

1:17

after that , every conference I went to Megan

1:20

was there . Megan is very to-be-ly

1:22

healthy and she was born with a single

1:24

ventricle heart , which included

1:27

the stychnoses , hypoplasic

1:29

left heart syndrome , transposition of

1:31

the great arteries and epintricular septal

1:33

defect . She has a Facebook

1:35

page called MyHLHS

1:37

Story and she's an advocate for the CHD

1:39

community . I'm very excited to have

1:42

Megan on the podcast today because she

1:44

is beginning a new chapter in her

1:46

CHD story . I have invited

1:48

her to share that with me on the podcast

1:51

. After our interview , megan

1:53

Towers and I will take turns reading essays

1:55

from chapter three and chapter four of the

1:57

Heart of a Heart Warrior . You can sign

1:59

up to take part in a book study

2:01

of volume one on our website , babyheartspresscom

2:04

. We'll be discussing the book Mondays from

2:06

five to six pm , central Standard

2:08

Time in the United States . We

2:11

will discuss the book for the first three weeks

2:13

and in the fourth week will be a jeopardy

2:15

game where people can win prizes . All

2:18

questions will be based on volume one

2:20

and what we discussed in the book studies

2:22

. It's only $10 per session

2:24

and people are welcome to join any session

2:27

. Now on to the show . Welcome

2:29

to Heart to Heart with Anna Megan

2:32

.

2:33

Thank you , I'm excited .

2:35

I'm so excited to have you here . This is

2:37

long overdue .

2:38

I know .

2:39

We have talked about this before . I don't know why

2:41

we've waited so long , but I'm thrilled

2:43

that you are here today because

2:46

I saw a post on your Facebook

2:49

page that made me jump up and down with excitement

2:51

. You have a baby , so

2:54

now you have to tell me about your

2:56

experience of becoming a mother .

2:59

It actually started two years ago

3:01

. We wanted to see

3:03

if I could carry , because I was

3:05

never told as a kid that I couldn't . So

3:08

we did all the testing and we

3:10

actually got the okay to do so

3:12

. Really , yes , we did

3:14

. My cardiologist in Emory

3:16

and in Boston both

3:19

said yes , but

3:21

it came back with we

3:23

don't know what's going to happen and

3:25

I have to stop all my medications .

3:28

So that was terrifying .

3:30

Oh yeah , that would terrify me yeah

3:32

.

3:32

Yes , so scary . So then we

3:35

had the conversations and my husband and I

3:37

decided not to go that route

3:39

, just because we don't know what's going

3:41

to happen with me not being on medication .

3:43

Sure .

3:44

So then we thought we would do the surrogacy route

3:46

. We had a couple people

3:48

say they would do it for us , which

3:50

was amazing , but it ultimately

3:53

did not work out for any of them , which

3:55

is fine . Everyone offered and that was great

3:58

. So then we finally took

4:00

the last turn to adoption . In

4:02

June of last year , we signed with our

4:04

lawyer and then we got

4:06

matched in September of 2023

4:09

and he was born January

4:11

2024 .

4:12

Oh , my gosh . So you

4:14

got matched with somebody who was pregnant

4:17

. It wasn't even like they matched you with a baby

4:19

that had already been born .

4:21

No , yeah , she was pregnant and she picked

4:23

us to be the parents .

4:26

Oh my gosh

4:28

. I actually have several friends who have adopted

4:30

children , and

4:32

it's quite a process to go

4:35

through , isn't it ?

4:36

Very very .

4:38

They felt like they had to tell their entire life story

4:41

and the paperwork

4:43

that they had to fill out . So what

4:45

kind of information did she have in

4:48

which she knew she wanted to

4:50

choose you and Billy ?

4:52

On our profile that they showed birth

4:54

mothers . It was just about

4:56

what we do for a living

4:58

, what we like about each other

5:00

, why we got married , how we met

5:02

, what do we do in our spare time

5:05

, what does our house look like ? Do

5:07

we have any pets ? Just those kind

5:09

of things that you don't really know

5:12

too much about a person . I didn't even put that I

5:14

had a heart defect on my profile . Our

5:16

lawyer said not to just

5:18

to say that I was not able to have

5:20

kids on my own and that way

5:22

it's not like a bunch of questions from the birth

5:24

moms .

5:26

Yeah , that makes sense , because

5:28

it's not like your heart defect prevents

5:31

you from living a regular life . You

5:33

have a very normal life , but

5:35

I think you're smart that one of the reasons

5:38

why you'd have such a good quality of life is

5:40

because of your medications helping

5:42

you to live the best life you can . So

5:45

I understand why you were afraid

5:47

to stop taking those for gosh

5:50

. Nine months , that's a long time .

5:52

That's a long time .

5:54

So it sounds like it

5:56

wasn't even hard for that mother to say

5:58

oh , this is a couple that I want to raise

6:00

my baby .

6:02

Yeah , it was really nice that we actually got to meet her

6:04

when he was born , really

6:06

.

6:07

Okay , so are you going

6:09

to let the birth mother be part

6:11

of the baby's future ?

6:13

She chose not to . In

6:16

the state of Florida . It's all up to the birth

6:18

mother and what they want . So

6:20

she did want to meet us when he was born

6:22

and then after that she only

6:25

wants pictures that are sent through

6:27

a personal Facebook page , just for her

6:29

.

6:30

Oh , I didn't even know you could do that .

6:32

Okay , so she doesn't want to really talk

6:35

to us , she just wants to see him , and that's

6:37

it .

6:38

Well , I understand choosing

6:40

an option for your baby has

6:42

got to be a really difficult

6:45

decision , but it's such a loving

6:47

decision . It's

6:50

such a loving decision to go

6:52

ahead and carry that baby to term

6:55

, even though you know it's not

6:57

the right time for you to have a baby and

6:59

to want the best for your baby

7:01

so you find a couple that you know

7:03

will love that baby . I

7:05

think it's a very selfless thing to

7:08

do actually .

7:09

Very , and we're so thankful for her .

7:12

What did you think when you met her ? Does she look like either

7:15

one of you ?

7:16

No , she does not . She is

7:18

Guatemalan . So he is

7:20

Guatemalan and half Mexican

7:23

. He's a cute little baby , though

7:25

. He's so adorable he is so adorable

7:27

.

7:28

Oh my gosh , you know I'm a grandmother , so

7:30

, yes , I'm kind of a sucker

7:32

for little kids . And oh

7:34

, I bet your parents are over the

7:36

moon .

7:38

Yes , it's the first grandbaby on my

7:40

side .

7:40

Oh , how lovely

7:43

. Now do your parents also live in Florida

7:45

?

7:46

No , they're actually both up north . One

7:48

is in Michigan and one's in Ohio .

7:51

Oh , they have the same situation I

7:53

do . They have a grandbaby in Florida

7:56

and they're far away . I'm over a thousand

7:58

miles away from my grandbaby and it's

8:00

so hard . However , there is Snapchat

8:03

and FaceTime and we are

8:05

thankful that we have that way

8:07

that we can still talk to each other

8:09

and still see each other , so that

8:11

makes it special . Yes

8:13

, have they already come to Florida

8:15

to visit with the grandbaby ?

8:18

Yes , my dad came down a week after

8:20

he was born , and then my mom was just

8:22

here this week .

8:24

Oh my gosh , how exciting . So

8:26

no problem with him bonding

8:28

with the baby , I imagine .

8:30

Not at all . Not at all .

8:32

Oh my goodness . And what about Billy's family

8:34

?

8:35

His mom actually lives here , so

8:37

she is around , and then the rest of his family

8:39

is spread out all over .

8:42

So will his mother be able to help

8:44

you some with the baby .

8:46

I've been on maternity leave since he

8:48

was born . I actually go back to

8:50

work on March 4th and I'm really upset

8:53

about it , but we actually have

8:55

a home daycare that he's going to be going to .

8:58

That's good . Is it near your house , oh

9:01

?

9:01

yeah , she's 10 minutes from . Me .

9:02

Oh , that's awesome . So you're

9:04

a working mom ? Yes , do

9:07

you work full time outside the home ?

9:10

Yes , I do work full time . That's

9:12

going to be rough , I know . Even

9:14

just thinking about it today , I'm like I don't want to go back

9:16

.

9:17

I know what is it that you do , Megan ?

9:20

I work with children on the autism spectrum

9:22

, so I do one on one therapy with them

9:25

.

9:25

Okay , now that you

9:27

said that , I remember You're saying that you worked with

9:29

special kids . So , yes , I

9:32

know it's going to be hard to leave your

9:34

little one , but there aren't that many people who do what

9:36

you do I know .

9:39

You're so vital .

9:40

You're so vitally important . Oh

9:43

, my heart aches for you . I know

9:45

you're going to make it work and you have a mother-in-law nearby , so that will

9:48

help out too . You already found a great daycare . It sounds

9:50

like you're getting all your

9:52

ducks in a row .

9:54

Definitely definitely .

9:56

What advice do you have for other women who have complex

10:00

congeal heart defects , like you do , and

10:03

they want to be a mother as well ?

10:04

I would say honestly

10:06

, do the testing , even

10:08

if you think it's a no , just

10:11

to see what they say . Because I went in thinking

10:15

, oh , it's going to be a no automatically

10:18

, but they both said , oh , no , I think we can do it . And

10:21

I was like , oh , wasn't expecting

10:23

that , just to see where your ad helps

10:25

as well , because I had to do

10:27

stress tests , blood work , all of the tests

10:31

, to see if I could do it and I passed everything with

10:34

flying colors , which was great , but

10:36

the whole medicine part is what really stopped

10:38

us . And if you are a no

10:41

to getting pregnant , explore

10:43

the other options . I have a friend

10:46

who does have now almost two

10:48

kids one is on the way and

10:51

she used a surrogate and I know plenty of people who have adopted

10:53

. There's

10:55

a lot of different routes to take

10:57

to be a mom .

11:00

There are absolutely . Do you mind if I delve

11:03

a little bit deeper into the

11:05

tests that you had to take ? Because the

11:07

stress test , that seems like

11:09

a no brainer . Why did you have to have

11:11

blood test ? They ?

11:13

just wanted to check the levels of everything , just to

11:15

see what could possibly go

11:17

wrong or what would add

11:19

on to things . And everything came

11:23

back great , which is perfectly good for

11:25

me . Just to see if anything was too high , like your

11:27

thyroid or anything

11:29

like that , just to see what would

11:31

make pregnancy harder .

11:33

Besides the heart . Okay

11:35

, so they did

11:38

a stress test , they did a blood test . What

11:40

else did they do with you ?

11:42

I did an echo , I did EKG

11:44

, they did my liver scans

11:47

and all of those the fibroscan , I believe , is what

11:49

it's called . That

11:51

was not fun . That was my first time getting that one . I've

11:53

never heard of that . Yeah

11:55

, A fibroscan it looks like an echo

11:58

wand , but they push a button and

12:00

it pushes into you hard

12:02

and it's all over the

12:05

liver area .

12:07

How do they get in here ?

12:09

It doesn't go into your skin , but it's like a pressure

12:12

every single time they push it

12:14

, and it lasted like 45

12:17

minutes .

12:17

It was not fun . Oh my gosh , that

12:19

sounds uncomfortable

12:22

.

12:22

It was very uncomfortable .

12:24

Wow . And what are they checking with

12:26

that ?

12:27

I guess it goes deeper into the liver

12:29

, like to see more without

12:32

doing a biopsy . So

12:34

that was nice that I didn't have to go under or

12:36

anything Right .

12:37

Yeah , you didn't have to be cut or anything like that

12:39

, so it doesn't sound very comfortable . Wow

12:41

, so they got a ton of information on you . So

12:44

, even if you didn't decide to go through with the pregnancy

12:46

, this lets you know that you are

12:48

in optimal health to be a mom

12:50

, because the pregnancy is one thing , but

12:52

taking care of a newborn baby , that is

12:55

also a ton

12:57

of work , and I have

12:59

wondered for some heart warriors

13:01

do you have the stamina to chase

13:03

after a baby when they're real little ? that's

13:05

not such a big deal . You're just spending a lot of time

13:07

feeding a baby and cleaning poop

13:09

, diapers and that kind of stuff

13:12

. But when they start crawling and then

13:14

they start walking and running , that's when

13:16

, wow , you've got to have stamina . But

13:18

having all of those tests also

13:20

lets you know wait a minute my body's in optimal

13:23

condition right now , even though

13:26

you chose not to go through with the pregnancy

13:28

which I think , given your condition

13:30

was a wise decision

13:33

. At least you knew that you were

13:35

in good shape to have a

13:37

child and be able to care for a child .

13:40

Yes , exactly when

13:42

we started the adoption process . We

13:44

have to get a home study . So anyone

13:47

who's looking for adoption and doing a home study

13:49

, you have to be honest about your heart

13:51

condition . No lying , you

13:53

have to be honest . We passed with no problem

13:55

.

13:56

That's good to know , so that would hopefully

13:59

make it less scary for somebody else who

14:01

wants to do that .

14:02

Yeah , she came in , we answered a

14:04

ton of questions . She

14:06

went over all the paperwork we filled out . We

14:09

had to get reference letters from our friends

14:11

and family , we had to get

14:13

Godparents just in case something happened to

14:15

us , all of those things and

14:18

then she just needed to see the house make

14:20

sure there's no water nearby , stuff

14:22

like that . And then that was it . We were approved .

14:25

Make sure there's no water nearby , because you

14:27

live in Florida and they're

14:30

drowning .

14:30

Drowning risks , yes , and

14:33

if there was , there needs to be a fence . Okay

14:35

, all that makes sense .

14:36

What was the hardest part of

14:38

the adoption process ?

14:41

I think waiting .

14:42

Yeah .

14:43

Waiting to be matched with someone . Because

14:45

, we did get four situations total

14:47

, which is where they

14:49

would email us or call us about

14:52

a birth mother , tell us a little bit

14:54

about them , what they're looking for

14:56

, how much , and then we could say yes

14:58

or no at that point . So then if

15:01

we said yes , they would show our

15:03

profile to the birth mother and

15:05

that's when she would pick us or not

15:07

. So we went through three

15:10

not being picked and then the last

15:12

one picked us .

15:14

When you say how much , does that

15:16

mean that you had to pay them a

15:18

certain amount .

15:20

Yes , okay

15:22

. So in the state

15:24

of Florida , to adopt

15:27

, you pay the lawyer fees and the adoption costs

15:29

and all of that , which that's

15:31

a whole . Nother thing that needs to

15:33

change , but part of it goes

15:35

towards her living as

15:38

well . She doesn't just automatically get

15:40

cash . It doesn't work like that . It's

15:42

in the form of gift cards or it's paid online

15:45

through our lawyer . So she never touched

15:47

anything .

15:49

Okay .

15:50

Okay .

15:51

I did not know that's how that happened . I live

15:53

in Texas and my friend who told me her

15:55

adoption story also lives in Texas

15:57

, and I imagine it's different in every state

15:59

.

16:01

It is . There's different laws , there's different rules

16:03

in every single state .

16:05

What's the best way for somebody to find

16:07

out what the rules and regulations

16:09

are in their state ?

16:11

You can definitely just Google it . If you

16:13

don't find the correct answers , call

16:16

an adoption lawyer . They'll give you all the information

16:18

.

16:19

Was it scary to contact an adoption

16:22

lawyer ? I'm just thinking , oh my gosh , how much

16:24

would it be , because Frank and I never made it that

16:26

far . We never made it past

16:28

thinking about it .

16:30

So originally we were going to go with an agency

16:32

. So there's agencies , there's adoption

16:35

consultants and adoption lawyers

16:37

. There's a lot to choose from and it's

16:39

overwhelming . Yeah , so we were

16:41

going to go with an agency . They

16:44

were slightly cheaper , but it was

16:46

to be matched throughout the entire

16:48

United States . Oh , if

16:50

we were to adopt in Georgia

16:52

and the birth mother gave birth

16:54

in Georgia , we would have to

16:56

wait for the state of Georgia and

16:59

the state of Florida to say that it's

17:01

OK to go back , which

17:03

can take months .

17:05

Yeah , oh my gosh , that's just crazy

17:07

Wow .

17:08

Yeah , ok , so there's people

17:10

that stay in Airbnb's for months .

17:13

That's really intensive , plus it's

17:15

nerve-racking , and how can you work ?

17:18

Yeah , exactly . So

17:20

, we got lucky and our lawyer only

17:23

matches in the state of Florida , so

17:25

we didn't have to do that part . But

17:28

we were going to go with an agency and

17:30

I had this weird gut feeling

17:33

not to . So I went

17:35

with that gut feeling and chose not to

17:37

go with that agency

17:39

, which I'm glad we didn't , because going

17:41

with this lawyer she was great , the

17:44

whole team she has is amazing and

17:46

we matched really fast . People

17:49

usually wait years for adoption .

17:51

Right . That's why I was shocked that you

17:53

got a baby , because a lot of times the

17:56

people that I have talked to it

17:58

doesn't happen that fast . Did you ever

18:01

consider the foster route ? Because

18:03

I know that that's something a lot of people do too

18:05

. They'll foster a child for a while

18:07

and then that can turn into

18:09

adoption .

18:11

Yes , we did consider that

18:13

. But with fostering it's all about reunification

18:16

with the family . So

18:18

both my husband and

18:20

I could not mentally tackle

18:22

that to take care

18:24

of someone and then lose them . So

18:27

we definitely thought about it . But with

18:29

our jobs there's no way we can just take

18:32

off , go back to work , take off , go back to

18:34

work . Yeah , that's rough . So we

18:36

chose adoption and

18:39

I'm glad we did , because it worked out for

18:41

us very well .

18:43

I am so excited for you and the

18:45

smile on your face and on

18:47

that sweet baby's face . Tell me the name

18:49

that you decided to give your baby .

18:52

His name is Hunter Hart , so

18:54

Triple H . Oh yeah , the

18:57

middle name comes from my older sister

18:59

. She passed away about seven years

19:01

ago , so we wanted to add one of

19:03

her names into his .

19:06

Aw , that's so sweet . I love

19:08

that .

19:09

It's funny because a lot of people thought it was because of my

19:12

heart , but her

19:14

last name was Hart H-A-R-T

19:16

.

19:17

Oh my gosh , that's so cool

19:19

. Hunter Hart Hout yes

19:21

.

19:22

Yes .

19:23

I am absolutely thrilled for you and

19:25

I am so happy that I'm following

19:28

your page because I have a feeling while

19:30

I'll be able to learn a little bit

19:32

more about your CHD journey

19:34

, but now as a mom

19:37

. So thanks so much for coming on the program

19:39

today , Megan , and sharing your

19:41

wonderful , good things with us . Yes

19:44

, thank you so much . This was

19:46

so much fun . That concludes

19:48

the interview portion of the podcast . We'll

19:51

take a short break , but when we come back we'll have

19:53

a chance to hear my co-editor , megan

19:55

Tones , and me read from our new book , the Heart

19:57

of a Heart Warrior , volume 1 , survival . Today

20:00

, you'll hear us finish reading Chapter

20:02

3 and you'll hear us read Chapter

20:04

400 , conclusion . This content

20:06

is not intended to be a substitute for

20:08

professional medical advice , diagnosis

20:11

or treatment . The opinions expressed

20:13

in the podcast are not those of

20:15

Hart's Unite the Globe , but of the hosts

20:17

and guests , and are intended to spark

20:19

discussion about issues pertaining to congenital

20:22

heart disease or bereavement .

20:27

You are listening to Heart to Heart with Anna . If

20:29

you have a question or comment that you would like to

20:31

address on our show , please send an email

20:34

to annajewarski at anna at

20:36

hearttoheartwithannacom . That's

20:39

Anna at hearttoheartwithannacom . Now

20:42

back to Heart to Heart with Anna .

20:46

All Entries by Alicia Lynch Takakardia

20:50

, june 21 , 2010

20:52

. Is it okay if I lie down

20:54

? The flutter in my chest

20:57

started about five minutes ago . I

20:59

ignored it . Think it would go away in a few

21:01

minutes , but now I felt lightheaded

21:03

. My friend Katie is understanding

21:06

, despite only telling her about

21:08

my heart condition once a few months back . Sure

21:11

, you can lie on the couch . Do you want some water

21:13

? This summer and

21:15

I just graduated from high school I

21:17

want to stay in touch with my small group of

21:19

friends , so when Katie invited me

21:21

to a sleepover and to watch anime

21:24

together , I knew I had to go . The

21:26

fluttering began after watching Sailor Moon

21:28

and eating dinner with her parents . I

21:30

had felt flutters like this before and

21:33

usually they went away quickly . However

21:35

, this time the feeling

21:37

is lingering for longer . I

21:40

lay down on their couch for an hour or

21:42

two , laying in different positions

21:44

, but nothing is making me feel better . Eventually

21:47

, I ask if I can call my mom . Hey

21:50

, mom , I'm feeling a weird flutter in

21:52

my chest and I'm a little lightheaded

21:54

. Should I come home ? My

21:56

mom agrees I should , and as I hang up

21:58

the phone , I know she is going to take this

22:00

seriously . She knows my medical

22:03

history like the back of her hand and

22:05

since I was born she has always been my biggest

22:07

advocate . When she arrives

22:09

to pick me up , I feel both relieved and

22:11

nervous . Relieved , I am now with my

22:14

mom , but nervous because I know what

22:16

happens next . I ask should

22:18

we go to the ER ? The lightheadedness

22:20

intensifies and I sit back

22:23

as the feeling washes over me . Well

22:25

, how do you feel ? Has a flutter gone away

22:28

? I don't respond and

22:30

my mom looks over to see me passing out in

22:32

the passenger seat Going

22:35

forward . June 28

22:37

, 2010, . I

22:39

had been at BCH Boston Children's

22:41

Hospital for about a week now , being

22:43

constantly monitored for arrhythmias . My

22:46

mom slept on a cot in my room with

22:48

me . So far , we

22:50

learned the cause of the arrhythmia was

22:52

from a closure device put in by catheterization

22:55

. A few weeks ago , while

22:57

originally checking my valve pressures

23:00

, they found a narrowing in my fontan

23:02

pathway . They used a balloon

23:04

to open the narrowing but accidentally

23:06

poked a hole . As a result

23:08

, they needed to put in a closure device to plug

23:10

the hole . So the flutter I felt

23:13

at Katie's was atrial tachycardia

23:15

caused by the device interfering

23:17

with the rhythm of my heartbeat as

23:19

I lay in my hospital bed and giggle with

23:21

my mom about the cute male nurse I

23:23

had yesterday . A doctor strolls

23:26

into my room with a surgeon's cap on . He

23:28

heads to the patient next to me in the same

23:30

room . My mom sees him and

23:32

suddenly recognizes him . Hey

23:34

, dr Mayer Alicia , this

23:36

is your surgeon . I

23:38

take a breath in , widening my eyes in

23:40

surprise . I've never met my surgeon

23:43

, as my last surgery happened 14

23:45

years ago and I was 4 years old

23:47

. As I try to think of what to say

23:49

to the man who saved my life , he taps

23:51

my foot and addresses my mom and me Hi

23:54

, oh , yeah , so I think we'll go forward

23:56

with surgery . My breath

23:58

catches in my throat and I stare at him

24:00

. He nods at us and walks past

24:03

towards my roommate , the patient he intended

24:05

to see . I look over at my

24:07

mom , tears welling in my eyes . Surgery

24:10

I'm going to have another open

24:12

heart surgery . I barely remembered

24:14

my two previous ones , but this one I

24:17

would remember Reconstruction

24:20

, july 21st 2010

24:22

. I wake up in the dim ICU of BCH

24:25

. My blurry eyes focus and I

24:27

notice a soreness in my throat . I

24:29

try to swallow but realize I can't because

24:32

of a breathing tube in my throat . I

24:34

peer around looking for a familiar face

24:36

, but find none . Tears stream

24:38

down my cheeks . I made it through

24:40

surgery , but I am alone . A

24:43

nurse walks in and notices I am awake

24:45

. She places a piece of paper

24:47

and pen on a clipboard and hands it to

24:49

me . Don't try to talk , here

24:51

you can write on this . My

24:54

mind is foggy from this additive , my

24:56

body heavy and I'm seeing double

24:58

. It's difficult to even hold the pen

25:00

, but I manage to write something . It

25:03

reads when are my parents ? In jagged

25:05

letters . Finally , I see my

25:07

mom walk into view . She reaches

25:09

out to hold my hand . Hi , honey

25:11

, you awake ? I nod

25:13

my head as crying becomes sobbing

25:15

. The last thing I remembered was asking

25:18

a nurse for more calming medication for

25:20

my anxiety before surgery and

25:22

then counting down from 100 , waiting

25:24

for this additive to take hold and bring me to

25:27

sleep . Now , as I awaken , I

25:29

feel a wave of relief . I was terrified

25:31

going into this , wondering if I would even wake

25:33

up , but now here I am on the other

25:35

side , waking up to see my family

25:37

. The procedure they performed

25:40

is called the Fontaine revision , where they

25:42

repaired my common atrial ventricular valve

25:44

and replaced my half-manmade and

25:46

half-tissue Fontaine with a 100%

25:49

manmade tube . This would

25:51

help with my blood circulation , so

25:53

oxygenated blood would better be able

25:55

to reach my hands and feet . Looking

25:59

back now , I realize how important this

26:01

procedure was to my life . I

26:03

began my freshman year of college only weeks

26:05

later . In my junior and senior

26:07

years I joined the dance club . When

26:10

I'm nervous , I shake just slightly

26:12

not enough for anyone to notice usually

26:14

, but enough so I can feel my hands jittering

26:17

. The anxiety is always the worst

26:19

right before I'm about to go on stage

26:21

. This is my fourth

26:23

semester being in the dance show . I'm

26:25

used to being in the spotlight , but the shaking

26:28

still comes before I step out . This

26:31

semester I took three classes a week

26:33

, something I never imagined I

26:35

could ever do . I'm in the best

26:37

shape I've ever been in and I feel phenomenal

26:39

. Yet this has still been a

26:41

tough year for me , because this amount

26:43

of dancing was exhausting for my Fontaine

26:46

heart . The first few weeks of classes

26:48

I was sore and worn out as I got used

26:51

to exercising more and I took

26:53

frequent water breaks . Yet I knew

26:55

it would be worth it when I got to dance in three

26:57

different numbers at the end of semester spring show

26:59

. Now that moment has

27:01

come . I am about to perform in

27:03

the lyrical one , hip hop two

27:06

and jazz two numbers . Behind

27:08

the curtains , I stand in a red sequined

27:10

tank top and spandex dance shorts

27:12

. I take a few deep breaths trying

27:15

to calm my nerves . The intro

27:17

to Toxic by Britney

27:19

Spears plays on the speakers and

27:21

I step onto the stage smiling . Alicia

27:26

Lynch was born July 3 , 1992

27:28

, with a single ventricle and heterotaxi

27:31

. Her hometown is Pepperyl

27:33

, massachusetts . Alicia

27:36

enjoys yoga and during the pandemic

27:38

she even let her family in virtual

27:40

yoga workouts . A fun fact

27:42

about Alicia is that she collects unicorn

27:45

knickknacks .

27:47

Journey to Egypt by Megan Tones

27:50

. I gripped the railing

27:52

with both hands and hauled my body up

27:54

the thick stairs inside the Great Pyramid

27:56

. A Japanese tour group

27:58

grew closer behind me as my pull

28:01

step routine became a drag step

28:03

closer to the top . Far

28:06

from being a real life , lara Croft , I

28:08

stopped for a brief moment to ease the

28:10

burning sensation in my leg muscles

28:12

at the threshold of the burial

28:15

chamber . Inside

28:17

, different languages echoed off the walls

28:19

as I looked at the stone sarcophagus

28:21

where Kufu once lay , and

28:23

I mentioned how silent it must have been

28:26

. It took me a long

28:28

time to get here , and I'm not

28:30

just talking about stairs . I

28:32

must have answered a hundred questions to be

28:35

disqualified from travel insurance

28:37

. Was the effect

28:39

that person's skin or lips ever become

28:41

blue ? No , hey

28:44

, they never said anything about purple . Is

28:46

the person growing at a normal rate ? I'd

28:49

say so . Will surgery

28:51

be required in the future ? I

28:53

hope not . The travel

28:56

insurance clerk looked up at me . Any

28:58

other conditions Congested

29:01

heart failure . At

29:03

this , a hush fell over the room . The

29:06

clerk's face turned a couple of shades

29:08

lighter . I felt the stares

29:10

of the other customers behind me . In

29:13

their minds I had become a ghost

29:15

. I thought of the scene in Highlander

29:17

, where the main character walks into the tavern

29:19

and confronts the townspeople whispering

29:22

about his newfound immortality . How

29:26

on earth could someone have heart failure

29:28

and be talken and breathin' ? It's

29:30

unnatural , no-transcript . I

29:32

imagined this to be the thought in every

29:34

travel insurer's mind over the next few

29:37

days . It's not like all

29:39

people's heart failure . The rest

29:41

of my heart is fine . There's just a

29:43

big piece of it missing and that's why it doesn't work

29:45

so well . Last

29:47

time I went to emergency for atrial fibrillation

29:50

, they didn't even do anything and I

29:52

reverted on my own . There

29:54

was no use trying to reason with these people

29:57

, but one gave a helpful piece

29:59

of advice you just

30:01

need to pass the medical questionnaire

30:03

. Armed with this new

30:05

knowledge , I tried entering my medical conditions

30:07

into the questionnaire every possible way

30:10

and found what some might call

30:12

a loophole Stay out

30:14

of the emergency room for one year and

30:16

declare congestive heart failure as

30:18

the less life-threatening sounding impaired

30:21

contractility . I was confident

30:24

that I could stay out of hospital for heart

30:26

failure . I was in stage

30:28

two or three , depending on whom I talked

30:30

to . Although my stomach

30:32

waxed and waned more frequently than the

30:34

moon , I could manage . The occasional

30:37

flood with a bit of extra-lasex Arrhythmias

30:40

were a different beast altogether . For

30:43

the past two years , I'd had violent

30:45

bed-shaking fits of atrial fibrillation

30:48

at the beginning and end of winter that lasted

30:50

for days . The episodes

30:52

took a turn for the worst in 2012

30:55

, and I finally had an ablation

30:57

in July of that year . I

31:00

wish I could say that was the end of my episodes

31:02

no longer shaking

31:04

the bed . They are faster , with a more regular

31:07

rhythm , less frequent and last

31:09

only hours Armed with

31:12

warfarin . I decided I could wait out any

31:14

episodes I had while I was away . I

31:16

had to agree that few places on earth

31:19

compared to the majesty and history

31:21

of Egypt . Haven't

31:23

you always wanted to see the pyramids and

31:25

the sphinx ? My husband was

31:28

already researching places to go

31:30

. Now that I was insurable , there

31:32

was just one more thing we needed A

31:35

guide . We found many companies

31:37

offering the tour of a lifetime , but

31:40

for every thousand excellent reviews

31:42

there are a few terrible ones lamenting

31:44

ruined vacations , unsure

31:47

. I contacted them one by one , listing

31:50

my conditions and requirements for a

31:52

low sodium diet and access to

31:54

blood tests . The replies

31:56

came back we think our tour

31:59

would be too strenuous for you . I

32:01

don't think we could meet those requirements

32:03

. These rejections led

32:05

us to a small company by the name of Real

32:08

Egypt , unlike the

32:10

other companies . The owner , a

32:12

man named Samir Abbas , met

32:14

with us on Skype and listened patiently

32:17

to all of our requirements . I

32:20

treat my guests like family . I

32:22

will never take you anywhere that I would not

32:24

take my wife and children . He said

32:26

I was astounded

32:29

to see visits to pathology clinics , the

32:31

iron art tests slotted amongst the trips

32:33

to temples and museums . He

32:36

would also take a satellite phone on

32:38

our desert tour in case of an emergency

32:40

, warn me about salty

32:42

foods and make sure I drank enough water

32:44

. Finally , the

32:46

big day came . We said goodbye

32:49

to our families , who hugged us

32:51

like they would never see us again and

32:53

squeezed my feet and legs into DVT

32:56

stockings . The last time

32:58

I wore these , I was recovering from a mitral

33:00

valve repair . This time

33:02

I was embarking on a 24 hour

33:04

flight to Cairo . The

33:07

airport in Cairo was very relaxed

33:09

, given all the strife we had seen in the news

33:11

. Somebody ignored us

33:13

. As we took out bags and walked down in Mose

33:16

lined hall to meet our driver , I

33:19

scanned the signs and saw one that read Mr

33:22

Megan Tones . Close enough

33:24

, I said to my husband Outside

33:27

. We met Samir for the first time . We

33:29

were familiar with his mix of knowledge , humour

33:32

and calm , but not his size

33:34

. I imagined that he

33:36

would have to duck and turn sideways to

33:38

go through a door . These

33:40

traits came in handy many times when

33:42

the touts became too aggressive , and

33:45

even on the odd occasion when I needed

33:47

practical help . First

33:50

stop was a visit to a local restaurant

33:52

for the koshary , a traditional

33:55

fast food made with lentils

33:57

, chickpeas , onion , tomato

34:00

, rice , pasta and spices

34:02

. The smell was very enticing

34:05

after 24 hours of airline food

34:07

. There are riots five

34:09

minutes away from here , samir told

34:11

us , but look how calm it is

34:13

here . I gazed

34:15

around at the families talking and eating , some

34:18

women wearing head scarves and others not

34:21

, and at the cook flipping

34:23

a fresh batch of koshary on a gigantic

34:25

hot plate . Outside

34:27

of Cairo there were fewer tourists and

34:30

we explored the temples and monuments in

34:32

relative solitude . From

34:34

one excursion to a temple dedicated

34:36

to the crocodile god Sobek , I

34:39

watched the Galabia clad guards carrying

34:41

rifles Say

34:43

Samir , I said , what do you

34:46

have to do to get shot ? He

34:48

looked down at me and smiled , now

34:50

digging and see what happens Every

34:53

day . I took my late sex at 5am

34:56

so I could have it out of my system

34:58

before the day's excursion started . The

35:01

timing of my warfarin dosage was non-negotiable

35:04

, and I took it on the backs of camels

35:06

, all while gazing at the hieroglyphics

35:08

engraved in the walls of the temple of Seti

35:11

. I napped in

35:13

the Anubis shrine of Hatshepsut's

35:15

temple and on the seemingly

35:17

endless steps leading to Bani Hussam

35:19

. Towards the end of

35:21

our trip , we flew to Shamil Sheik

35:23

to climb Mount Sionil at Sunset

35:25

, or so we planned . The

35:28

guide was a sobspoke and bed-o and man

35:30

by the name of Salem who waited

35:33

with some camels hired to ease our ascent

35:35

. I knew from experience

35:37

that they lumbered like the AT-AT

35:39

walkers from Star Wars , threatening

35:42

to topple their riders with every step

35:44

, with a sheer drop on the

35:46

outer side of the mountain path . There

35:49

was no way that I was riding . Within

35:52

minutes I discovered the clang was going to be

35:54

much harder than I thought and

35:56

so short of breath I could barely take ten

35:59

steps without rest . I was

36:01

mildly concerned when my nose began

36:03

to bleed . My iron arm was

36:05

behind , or maybe it's the

36:07

thin air . Salem coaxed

36:09

me with chocolate , biscuits and dates as

36:11

we passed several tea houses , all

36:14

closed hours earlier . By

36:16

the time the sun set , we still

36:18

had a 750-step climb

36:20

to the summit . I

36:22

asked Salem if I had been the most difficult

36:25

tourist he'd escorted up the mountain

36:27

. No , I once

36:29

had a couple who made me carry their toddler

36:31

up these stairs . Another

36:33

man asked if I could hire a helicopter for

36:36

him . At 9pm

36:38

we reached the top . Salem

36:40

took us into a hut where we ate fried

36:42

potatoes with the bed-oans and a couple

36:44

of European backpackers . The

36:46

air was so thin I had to try all the heart

36:49

failure tricks to get to sleep . Everything

36:51

hunched over , laying on my right

36:53

side and raising my upper body . Even

36:56

my husband admitted he had trouble breathing

36:59

up there . It seems that

37:01

I had only just fallen asleep when one of

37:03

the bed-oans shouted Guests

37:05

, please get up . I

37:07

could not have slept in if I wanted to

37:09

. A group of Japanese tourists

37:11

had gathered in a dining room to read the Bible

37:14

out loud and sing religious songs . Was

37:16

it dawn already ? Away

37:19

from the shrillness of their stinging , we

37:21

took in the sunrise from the top of Mount

37:24

Sionilu . Of course

37:26

it was spectacular , but

37:28

I was still tired and breadless and my

37:30

medicine was at the base of the mountain . We

37:33

descended the steps of repentance

37:35

away from the vendors selling trinkets to

37:37

ecstatic tourists . On

37:40

the way , salem stopped to feed and

37:42

talk with tired or injured tourists . That

37:45

climb up Mount Sionilu was pretty dangerous

37:48

. The people have accidents

37:50

very often . I asked Salem oh

37:52

yes , they have accidents and

37:55

sometimes they die . Really

37:58

, what happens ? Do

38:00

they fall ? Oh no , they

38:02

had heart attacks . I

38:04

was glad I didn't know that before I started

38:07

. Although it is impossible

38:09

for me to pick a best memory or a favourite

38:11

place in Egypt , two places

38:13

come to mind before all the others

38:15

. The first was Badiya's

38:18

Museum in the Farafra Oasis

38:20

. Built by a local man

38:22

from death at materials , the

38:24

museum showcases the artist's

38:26

love and concern for his homeland . I

38:29

felt awed and humbled walking inside

38:31

Badiya's creation and was fortunate

38:33

to meet the man himself . The

38:36

other was Siwa Oasis , four hours

38:38

out of Cairo , a peaceful

38:40

place with a culture and language of its own

38:43

. Many of the buildings were made

38:45

entirely of sand . We

38:47

were the only visitors at the eco-launch

38:49

and we bathed in the hot springs as the

38:51

start served some of the most delicious

38:53

meals we had ever eaten . It

38:56

was the trip of a lifetime and

38:58

I didn't need the trip insurance even

39:00

once . Megan

39:03

Tones was born in Brisbane , australia , in

39:05

1983 . She

39:07

first caught the travel bug at age

39:09

six when she travelled to the UK

39:11

with her family for a vacation . Since

39:14

then , she has visited a few countries

39:17

for her research work , including China

39:19

, the USA , fiji

39:21

and Banuaji , and travelled with

39:23

her family to her hospital . That

39:26

trip to Egypt has been their biggest loss

39:28

of venture to date .

39:34

Heart to Heart with Anna is a presentation of Hearts

39:37

Unite the Globe and is part of the HUG

39:39

Podcast Network . Hearts

39:41

Unite the Globe is a non-profit organization

39:43

devoted to providing resources to the congenital

39:45

heart defect community to uplift , empower

39:48

and enrich the lives of our community members

39:50

. If you would like access to free

39:52

resources pertaining to the CHD community

39:55

, please visit our website at wwwcongenitalheartdefectscom

39:59

for information about CHD , the

40:02

hospitals that treat children with CHD , summer

40:04

camps for CHD survivors and much

40:07

, much more .

40:08

Chapter 4 . Chd is around the

40:10

globe . Congenital heart defects

40:12

are the number one birth defect around the globe

40:14

. As an American , this is meaningful

40:17

, but it wasn't until I was communicating

40:19

with people all over the world that I realized

40:22

the significance of having healthcare

40:24

. Just a car is right away . When

40:26

I was putting together the book the Heart of a Mother

40:29

, there was an essay by Helen Ng

40:31

which I absolutely loved . While

40:33

almost all of the women who wrote for that book

40:36

were not professional writers , helen

40:38

was . She was from Singapore

40:40

. Her essay was noteworthy

40:43

because it talked about her family's

40:45

need to travel from Singapore to

40:47

the United States for care for her son

40:49

Paeson . But when Meagan

40:51

and I started dividing the essays into chapters

40:54

for this book , we discovered

40:56

something amazing . We

40:58

actually had stories about people who immigrated

41:01

to other countries and they shared what that

41:03

meant for the healthcare they received in their

41:05

new homes . When

41:08

Lisa Colville came on my podcast Heart

41:10

to Heart with Anna , I told her at the end

41:12

of our recording that I would love to do a program

41:14

in Vietnamese . We had done

41:16

several podcasts in foreign languages . She

41:19

told me she didn't know another person from Vietnam

41:21

with a CHD . I knew there

41:24

had to be others , but in thinking about

41:26

it . I didn't recall any Facebook friends

41:28

from Vietnam either . Thus began

41:30

our search . The result we

41:33

found Amy M Lee thanks to the Vietnamese

41:35

Boat People podcast . I

41:37

did not know how discovering that podcast

41:39

and meeting Amy M Lee would change

41:41

my life forever . After

41:43

reaching out to Amy , I discovered

41:46

a woman with an amazing story and

41:48

a genuine friend . Since meeting

41:50

her , she and Jenny Muscatel helped

41:52

found the Heart Community collection

41:55

with me , and we've worked with Jenny on the CHD

41:57

magazine . Her essay Find

41:59

your Fears will help you understand

42:01

why she is a force to be reckoned with . I

42:04

completely misread Ellen Badnub . When

42:06

I first met her online , I thought

42:08

she was a quiet introvert . Since

42:10

she became a volunteer with Heart Unite , the Globe

42:13

, I've discovered that she's actually a bubbly extrovert

42:15

. In her essay we learned

42:18

about her passion for theater and

42:20

how , by acting in one play , she

42:22

hoped for a miracle . Ellen

42:24

shares with us how God doesn't always answer

42:26

our prayers the way we thought they would be . Belen

42:30

Altuve Blanton has

42:33

used her heart effect as a vehicle for

42:35

good . We are like two peas in a pod

42:37

. Although I am not a heart warrior

42:39

, I can identify with the quality of Belen's

42:41

heart . Originally from Venezuela

42:44

, she is an example of how , no matter how

42:46

far we move from our homeland , there

42:48

is a bit of our homeland always present in

42:50

our hearts . Belen has taken

42:52

her love for the people of her country and worked

42:55

some miracles . Moving

42:57

to the United States has probably allowed

42:59

her to do more good for the people of Venezuela

43:01

than if she had remained home . I'm

43:04

so glad she moved to the USA and

43:06

even happier that she is my friend . Her

43:09

essay shows how she is a friend to

43:11

the CHD Venezuelan community too

43:13

. Find

43:16

your Fierce . By Amy M Lee . In

43:19

the summer of 1974 , a

43:21

woman gave birth to the bluest baby . Underneath

43:23

the brightest stars and palest moon

43:25

. Outside the four walls of

43:27

her hospital room , a war

43:29

raged on in the humid

43:31

jungles of the Mekong

43:33

Delta and concrete jungles

43:36

of Vietnam . The woman named

43:38

Snow carried her baby for nearly

43:40

nine months and at 11.53

43:43

pm she gave birth to a baby

43:45

girl who screamed at the jarring

43:47

bright lights , shivered in

43:49

the cool air and shuddered

43:51

at the touch of rough hands as she

43:53

was passed from one medical staff

43:56

member to the other . No

43:58

one knew that in the next nine

44:00

months Saigon would fall

44:02

, the American war would end

44:04

and communism would reign

44:06

. April 1975

44:09

came to be known as Black April , but

44:11

for my mother's snow April 30

44:14

was a black day for a few reasons

44:16

. Yes , the Viet Cong

44:19

one and the American troops pulled out

44:21

, leaving the civilians fearful of what would

44:23

happen next . But it was a black day

44:25

for my young mother to find

44:27

herself betrayed by her husband as

44:29

he left Vietnam with his American

44:31

wife and son , abandoned

44:34

, jobless and far from

44:36

family . My sweet , beautiful mother

44:38

quickly learned how to keep us both alive

44:40

under the new regime . As

44:43

a child I looked alien , with my mottled

44:45

skin dripping from my small

44:47

skeletal frame . I was weak

44:50

from malnutrition , and what little

44:52

food I ate in war toward Vietnam

44:54

was siphoned by the worms in my

44:56

body because of poor sanitation

44:59

and spoiled foods . My

45:01

heart murmur and a hole in my heart compounded

45:03

all of this . It would be five

45:05

years before my mother learned that my

45:08

congenital heart defect had a name

45:10

atrial septal defect

45:12

. I fell a lot as

45:14

a child , but not because I was clumsy

45:16

. I cried a lot too , but

45:18

not because I was colicky . My

45:21

body was too frail to keep up with my

45:23

spirited personality and curious

45:25

mind . This frustrated

45:28

me At the time I was born

45:30

. Until I was three , mama and

45:32

family members constantly held

45:34

me . It's a wonder I learned to walk

45:36

at all or learned the meaning of independence

45:39

. Cousins watched me like

45:41

foxes on a chicken prowl to

45:43

make sure I didn't escape , otherwise

45:45

a whipping was in their immediate future

45:47

. Auntie squawked

45:50

over what I ate or did before I could

45:52

put anything in my mouth or dash for

45:54

the door . The only day more

45:56

suffocating than the thick tropical

45:58

air was my family's fussing

46:00

to keep me alive . My

46:03

only reprieve was when I was in the care

46:05

of my male relatives and their friends

46:07

. I got a sip of their beer if

46:10

I wanted to taste it . If I wanted

46:12

to wrestle with our chickens it was free

46:14

entertainment for them . If I wanted

46:16

to climb a tree , they'd say please

46:18

get the fruits up there for dear uncle , won't

46:20

you ? It wasn't safe outside

46:23

, with the Vietnamese soldiers flexing their

46:25

military muscles which looked a lot

46:27

like AK-47 rifles . But

46:29

that didn't matter . I wanted to run

46:32

, to play and to be normal . When

46:35

I was five , after several attempts

46:37

to escape Vietnam for fear of persecution

46:40

and starvation , my mother managed

46:42

to sneak us out of Vietnam along

46:44

with her 17-year-old nephew and

46:46

40 other boat refugees . She

46:49

had one mission and that was

46:51

to safely get us to freedom so

46:53

that I could have a life-saving operation

46:55

to fix my heart and patch

46:58

the hole that was my Achilles heel

47:00

. Time was ticking . As

47:02

the doctors predicted , I would not live

47:04

to see my fifth birthday . In

47:06

1979, . After

47:08

four years of living in fear

47:10

, risking imprisonment to sell

47:12

goods in the black market and

47:14

fighting to find food day by

47:16

day , my mama upped the ante

47:19

. We clandestinely

47:21

ran from our repressive government

47:23

in the dark cover of night and

47:25

boarded a small shrimping boat with

47:27

other refugees . My cousin

47:29

Tree was in charge of making sure I didn't

47:32

die . He was always watching over

47:34

me , touching me and carrying me . Fear

47:36

was in his eyes . Adventure was in

47:38

mine , Adrift for five

47:40

days in the South China Sea

47:43

, I saw the most alluring sunsets

47:45

, with a sky and water rendezvoused

47:48

on the distant horizon . My

47:50

eyes beheld the sharks , dolphins

47:53

, snakes and other sea creatures

47:55

that swam beneath the glistening waters

47:57

. The birds sang me lullabies

48:00

while the rain quenched my thirst

48:02

. My adventure quickly turned

48:05

into a crisis . My shipmates

48:07

moaned and groaned . They

48:09

complained about the lack of food and

48:11

the absence of land . Their stomachs

48:14

growled and their lips cracked . The

48:16

stentship , fear , vomit , urine

48:18

and defecation flipped my dreamy

48:21

world upside down . Then

48:23

we spotted land the

48:25

small island of Golang in Indonesia

48:28

became a desolate haven for hundreds

48:30

of thousands of boat people who were homeless

48:32

. We were no longer citizens

48:35

of any country . Separated

48:37

from our family , disconnected

48:39

from everything we ever knew and

48:41

weary of living . We

48:43

were refugees . The camp was

48:45

our shelter , but with it came

48:47

malaria , boredom , crimes

48:50

against humanity and hopelessness

48:52

. In the center of all

48:54

that was me , a ticking

48:56

time bomb ready to explode

48:59

any minute . Then good

49:01

news arrived we were getting sponsored

49:03

to America Shortly

49:05

after my sixth birthday . Five

49:08

months after arriving in America , they

49:10

rushed me to Seattle Children's Hospital

49:13

and I had open heart surgery

49:15

. I collapsed as a laggard

49:18

and awoke as a hustler , energized

49:20

to start school , learn English

49:23

, make friends , play sports

49:25

and be an all-American kid

49:27

. I always came in last

49:29

running the mile at school , but my

49:31

heart did not stop me from finishing the

49:34

run , making the volleyball and

49:36

badminton teams , playing football

49:38

four-square and dodgeball , climbing

49:40

ropes or jumping off a diving board

49:42

. Our voyage across

49:44

the ocean was Tantamount to the

49:46

surgery Dr Dale Hall performed

49:49

in 1980 . He

49:51

was a triple board certified doctor

49:53

who specialized in valve repairs

49:55

. Finding him was winning

49:58

a lottery Without great risks

50:00

. There are no miracle rewards . While

50:02

my six-inch scar initially

50:04

held me back from feeling confident in

50:06

my skin . It didn't prevent

50:09

me from blossoming into the heart-warrior

50:11

I am today . These

50:13

days , I am an advocate in the Vietnamese

50:15

and Congenital Heart Defect communities

50:17

. Thanks to my mother's courage , I

50:20

found my fears . Amy

50:23

Em Le is a Vietnam War survivor

50:25

and CHD warrior . She

50:28

grew up in Seattle and had a successful

50:30

career at Microsoft NT

50:32

Mobile before pivoting to Novelist

50:35

. Amy is the award-winning author

50:37

of the Snow Trilogy Snow in

50:39

Vietnam , snow in Seattle

50:42

and Snow's Kitchen . She

50:44

is currently working on her Phoenix series

50:46

three books showcasing the

50:48

resilience of people who have

50:50

survived deep trauma . Amy

50:53

is the founder of Quil Hock Publishing

50:55

, a woman-owned Asian American

50:58

company that helps indie writers

51:00

publish their books while amplifying

51:02

diverse voices through storytelling

51:05

. She co-founded the Heart

51:07

Community Collection , a resource

51:09

for the CHD community , and

51:11

sits on the board of the Vietnamese

51:13

Boat People podcast . Amy

51:15

also serves as an officer for two writing

51:18

organizations in Oklahoma

51:20

.

51:23

Healing by Ellen Benoob . Ellen

51:26

, I found a perfect role for you to do

51:28

in the play we are preparing for the crucifixion

51:30

for Holy Week . Michael told

51:33

me it's called A Space

51:35

to Crucifixion . Don't

51:38

you think I'll be bad at this ? Since I only

51:40

do comedy , I am sure I

51:42

cannot handle a play about crucifixion

51:44

. I said Believe

51:47

me , you all love this role . Something

51:49

inside me tells me this role is

51:51

just for you , ellen . Michael

51:53

said so what is this

51:55

role about ? I asked . I thought the

51:57

role might be the devil or someone evil

52:00

the woman who had

52:02

at this charge of blood for 12 years

52:04

. Michael said I

52:06

gassed all my life . I have been

52:08

waiting for a miracle to cure my sickness

52:11

. I long to be a healthy

52:13

person instead of a person with a complicated

52:15

heart , hyperplastic

52:17

lab ventricle with transposition of the

52:19

great arteries , pulmonary

52:21

artery , atresia and dextrocardia

52:24

. I have a great feeling

52:26

as I am sure the Lord will finally

52:28

heal me . I said I thank

52:31

you for choosing me for this role . At

52:34

the beginning of 2020 , my

52:36

church's acting team was preparing a

52:38

musical for Holy Week . The

52:41

play centered on some people that Lord Jesus

52:43

met , the miracles he did

52:45

and his crucifixion . I

52:48

prayed reverently and read the story

52:50

multiple times I meditated

52:52

on the woman who struggled with bleeding for twelve

52:54

years . During rehearsal

52:57

I got more in touch with the story

52:59

. Sure , god would heal my broken

53:02

heart in the same manner he cured the

53:04

bleeding woman in the Bible . I

53:06

did not know anyone with the cardiac problem

53:08

. I thought I was the only one who

53:11

had this condition . I

53:13

waited for the day of the play to be presented

53:15

because I was sure that God would do his miracles

53:18

me during my scene in the play will

53:20

lie like the bleeding woman

53:22

touched the hem of the Lord Jesus

53:24

Christ's dress . Covid

53:26

arrived and the lockdown happened , so

53:29

the theater team could not perform the play

53:31

. That was a massive disappointment

53:33

for me , as I felt God accepted this

53:36

virus to come and the lockdown

53:38

happened . So I did not get my miracle

53:40

. I was wrong Because

53:43

of COVID . I found different meanings

53:45

and tests of healing . For

53:48

this reason I thought the only

53:50

solution was to be healed by a miracle

53:52

. That was my focus During

53:55

COVID . I was terrified of getting

53:57

the virus , since I did not know

53:59

how my cardiac issue would react to it . For

54:02

this reason I was under significant

54:04

stress . But my siblings

54:06

searched online and found Facebook

54:09

groups the people living with congenital heart

54:11

defects . Then I joined

54:13

these groups and listened to Anna's broadcast

54:15

of Heart to Heart with Anna . I

54:18

contacted Anna and started volunteering with

54:20

her . I found different

54:22

healing meanings as I learned more about my condition . Also

54:27

, I know many people just like me facing the same struggle . Now

54:31

I am grateful to God for showing me different kinds of healing . God

54:33

guided me to see and know that I

54:35

am not alone . We are many and we

54:37

need to help each other in this

54:40

life . I

54:42

believe I finally found the purpose

54:44

of my life that God created me for To work and help

54:46

people like me . My favourite

54:49

sentence is you are not

54:51

alone . Sometimes heart warriors feel lonely

54:54

in this pain , but that is not true . There

54:58

is a reason I have this heart condition

55:00

, which is to help people struggling with physical illnesses . That

55:05

is how I live beyond my CHD . Ellen

55:10

Benu is an Egyptian who was born on November 6 , 1991

55:12

. With

55:15

hyperplastic left ventricle was transposition

55:17

of the great arteries , pulmonary

55:20

artery , atresia and dextrocardia . Ellen moved

55:22

to Montreal , canada , 9 years

55:24

ago . She

55:28

is studying social services and plans to be a social worker . Her

55:33

cardiac situation helps her choose

55:35

this career in order to support others struggling with their lives . Ellen

55:40

has two nieces , one in Canada

55:42

and one in Egypt . Ellen is the youngest child in her family . She

55:47

has straight heart , healthy siblings , little Star of

55:52

Bethlehem by Balan Blanton .

55:56

Many years ago , when I was turning 15

55:58

, my keen senorah I had my first heart attack . This

56:00

devastated my parents who didn't know

56:02

if I was going to make it Just

56:07

like after my first surgery . The dress , the guests , the party , everything

56:09

was ready , but I was fighting for my

56:11

life . I

56:14

was in the hospital for over three weeks . It

56:17

was very traumatic for a 14 year

56:19

old who only wanted to live and have her

56:21

big party . Well , I made it

56:23

. I

56:28

remember the day of my party , the face of my parents

56:30

, my family , my friends , my family . I danced the entire

56:32

night and everybody was so amazed

56:34

to see that the girl who was in

56:36

ICU fighting for her life

56:38

was having the time of her life . My

56:42

cardiologist , Dr Ivan Makato Atias

56:44

, who saved my life , whispered in my ear you

56:48

are my little star , bethlehem . God

56:50

bless you always . I

56:55

was born in Venezuela with a heart disease , tricuspid Atresia

56:57

. Every doctor told my parents to

56:59

let me die in peace , but they never gave

57:01

up . We had

57:03

a neighbor who told them about

57:06

the new cardiologist in town . They came

57:08

back from Texas Children's Hospital

57:10

and was very knowledgeable about congenital heart disease

57:12

. They

57:16

took me there and sent me to Houston where

57:18

Dr Denton Cooley performed my surgery . Living

57:20

with CHD is not easy , but it is not impossible . Having the

57:22

right attitude , faith and listening to your body

57:25

are the keys . 35

57:28

years later , I was on disability and

57:30

unable to work because of my CHD . I

57:34

said to God I know I must have a purpose in

57:37

life , and my CHD journey started . I

57:39

joined the CHD journey because I was

57:41

a doctor . I said to God

57:44

I know I must have a purpose in life , and

57:46

my CHD journey started

57:48

. I joined ACHA

57:51

, went to the conferences and

57:53

started my work as an advocate

57:55

for my illness . Two

57:57

years ago , in the middle of the pandemic

58:00

, a lady messaged me on my private

58:02

Instagram page asking for help

58:04

. She told me that her baby

58:06

was born with Tricuspid Atresia . They

58:09

were living in Venezuela and did not know

58:11

what to do . I wrote back with

58:13

some information about the cardiologist I knew . After

58:17

struggling with all the obstacles presented

58:19

because of their health and living

58:21

in my country of birth , they lost

58:23

the battle and died . For

58:25

me it was unbelievable . Venezuela

58:29

has skilled doctors . What's going on ? So

58:32

I called my brother , dr Macado's

58:34

son , who is now a cardiologist in

58:37

Venezuela and a professor of

58:39

medicine at the most important state university

58:41

, he told me that 4,000

58:44

children are born yearly with CHD

58:46

and less than 10% receive

58:49

the cardiac care necessary . I

58:52

thought , thank you God , I got

58:54

it . This is my life's purpose

58:56

and just like that

58:58

, I created the Estrelita de

59:00

Belén Foundation . Almost

59:03

two years have gone by and I enjoy

59:05

and work like I have never before . These

59:08

children are my motivation in life

59:10

. They deserve to have a life like I did . The

59:14

most amazing thing is that six months

59:16

ago , a mother contacted me

59:18

because her 14-year-old was

59:20

having palpitations and needed

59:23

to have an ablation because of Wolf Parkinson

59:25

White Syndrome . Guess what ? She

59:28

was getting ready to celebrate her 15th

59:30

birthday , just like me 40

59:32

years ago . That's when

59:35

I realized yes , this is my mission . Estrelita

59:39

de Belén means little star of Bethlehem . Those

59:43

were the words that my cardiologist whispered in my ear when he danced

59:45

with me . Belén

59:48

Altuve Blanton was born in Venezuela with a congenital

59:51

heart defect . Her

59:54

parents had her transported to Houston

59:56

, texas , for life-saving surgery at six months of age . In

1:00:00

2015 , belén became a

1:00:02

member of the Adult Congenital Heart Association . Realizing

1:00:07

the plight of those with CHD in the

1:00:09

USA and Venezuela spawned

1:00:11

a desire for Belén to do more for others . She

1:00:15

created the foundation Estrelita de Belén

1:00:18

to help underprivileged children in Venezuela . Belén

1:00:22

also works with Hearts Unite the Globe

1:00:24

as one of the co-hosts of Guerrero

1:00:27

Sto Corazon , a Spanish-language podcast for the CHD community

1:00:29

. Belén

1:00:33

has also joined GlobalArch and is part of their communication

1:00:35

team . Conclusion , we

1:00:40

hope you have enjoyed these essays from a remarkable group of people born with

1:00:42

congenital heart defects . After

1:00:46

four years of working on a book , talking

1:00:48

to the contributors , using developmental editing techniques in order to help

1:00:50

draw stories out of the contributors and continuing to dig deeper for more meaning

1:00:53

, I have learned that my heart-warrior is

1:00:58

right . These people are not warriors in the

1:01:00

traditional meaning of the word . She

1:01:05

is right in saying that the struggles and the fights that

1:01:07

they must endure are simply for their own survival . However , having

1:01:10

a book title like the Heart

1:01:12

of an Adult Born with a Congenital Heart Defect just wasn't as catchy . Like

1:01:17

it or not , the CHD community

1:01:20

views these adults born with special hearts as warriors , and I can appreciate

1:01:22

their perspective as well . However , having a book title

1:01:24

like the Heart of an Adult Born

1:01:26

with a Congenital Heart Defect just wasn't as catchy . Like

1:01:33

it or not , the CHD community views these

1:01:35

adults born with special hearts as warriors , and I can appreciate their perspectives

1:01:37

as well . During

1:01:41

a philosophical discussion about the title of the

1:01:43

book with my daughter , she mused aloud whether it was the parents who needed the label heart warrior

1:01:45

to help them mentally

1:01:48

in dealing with the issue of the heart-warrior , to

1:01:50

help them mentally in dealing with the

1:01:52

arduous task of raising a child with a chronic

1:01:55

illness . There is so much psychology

1:01:57

that goes into raising any child

1:01:59

. How do parents psych themselves into

1:02:01

being ever present in a world

1:02:03

full of uncertainty doctors

1:02:06

, procedures , operations , negative

1:02:09

prognoses , fear , anxiety

1:02:11

, guilt and pain ? Do

1:02:13

we need to view our children as heart warriors

1:02:15

to give ourselves hope and courage ? It's

1:02:18

possible . One thing

1:02:20

is certain Amazing people created

1:02:22

the essays , poems and artwork in

1:02:24

this book . Sadly , the word

1:02:26

amazing is overused in today's vernacular

1:02:29

Dictionarycom defines the

1:02:31

word amazing as causing great surprise

1:02:33

or sudden wonder . I think it is

1:02:35

surprising that this cohort of people

1:02:37

has survived , beating the odds

1:02:40

, approving so many in the medical community

1:02:42

wrong . How happy

1:02:44

I imagine those self-same physicians would

1:02:46

be to learn that science could indeed

1:02:48

stay a step ahead of most of these contributors'

1:02:50

needs For many

1:02:52

of the people . I think they would give a nod to

1:02:55

the fact that God has had a hand in all of this too . There

1:02:58

are too many stories of people's experiences

1:03:01

that qualify as miracles to

1:03:03

deny a being more powerful

1:03:05

than we mere mortals . Thank

1:03:07

God for the physicians , the nurses , techs

1:03:10

, pharmacists , researchers and scientists

1:03:12

who have propelled the field of pediatric cardiology into

1:03:15

the innovative discipline it is today . Thank

1:03:19

God for the parents who never gave up on their

1:03:21

children , allowed those same children

1:03:23

to be the pioneers of a brand new field of medicine , and who believed

1:03:25

that their children could make it . Thank

1:03:29

God for the people born with congel to heart defects

1:03:31

, who refused to give up , buckled down and

1:03:33

created courage out of fear , and

1:03:36

who came to realize the quality

1:03:38

of life Trump's quantity of life hands down . Thank

1:03:41

God for the technology we have today that has led us to render

1:03:44

this book Finally

1:03:46

. Thank God for you , dear reader , for giving us a purpose

1:03:48

in bringing these stories to light . If

1:03:51

you've enjoyed Volume 1 , survival , you'll

1:03:53

really enjoy Volume 2 , endurance , and

1:03:56

Volume 3 , transformation of our series . In

1:03:59

Volume 2 , you'll see what service means

1:04:01

to many of our heartwarriors and how

1:04:03

they have benefited from receiving service in a variety of ways , and

1:04:07

how even more of our contributors have provided

1:04:09

services to the CHD community and beyond . You

1:04:13

won't want to miss Chapter 6 on motherhood

1:04:15

. Learning how members of the CHD community have

1:04:17

become mothers is both exciting and touching . Finally

1:04:22

, the Facing my Mortality chapter

1:04:24

is one that highlights what makes the CHD community so tight-knit

1:04:26

and

1:04:29

why long-lasting relationships seem

1:04:31

to be built almost overnight once

1:04:33

heartwarriors or their family and friends

1:04:35

, meet others in the CHD community . Volume 3 , transformation

1:04:38

, is the most diverse

1:04:40

book of the series . In this volume you'll enjoy

1:04:42

works of art by a variety of heartwarriors . In

1:04:48

Chapter 9 , heartwarrior Authors

1:04:50

, you have a chance to read excerpts from books

1:04:52

written by heartwarriors , all memoirs that beg to be read at a later date . You'll

1:04:58

also have a chance to read original essays by authors Kimberly Russell and

1:05:00

Dr Brandoline Phillips . The

1:05:04

concluding chapter of this series deals

1:05:06

with a very important topic Living their Lives Beyond my CHD . This

1:05:11

chapter boasts stories about

1:05:14

exceeding expectations , as well as advice and lessons learned by veteran

1:05:16

heartwarriors who have survived for decades despite the prognostications they would die

1:05:18

young . For inspiring books

1:05:20

, please visit our website , babyheartspress , wwwbabyheartspresscom

1:05:22

, for these books and more . That

1:05:27

concludes this episode of Heart to Heart with

1:05:30

Anna . Thanks for listening today

1:05:32

. I hope you found the program helpful

1:05:34

. Please leave a review of the podcast on Apple Podcasts . Reviews

1:05:37

. Help others searching for podcasts about CHDs to find

1:05:39

us . I

1:05:42

appreciate Megan helped sharing

1:05:44

her beautiful story of Hope with Us . So thankful for Meaghan Tones , as

1:05:46

we share stories of Hope through our books

1:05:48

and this podcast , and

1:05:51

I'm thankful for all of you , my loyal listeners

1:05:53

. Remember my friends , you are not . I

1:05:55

hope you enjoyed this episode of Heart to Heart with Anna

1:05:57

. And I hope

1:05:59

you enjoyed this episode of Heart to

1:06:01

Heart with Anna .