September 14, 2023 • 31 mins
En este episodio tenemos la historia desgarradora de Jatniela, madre de Juliet que nació con una cardiopatía congénita llamada Anomalía de Ebstein. Ella son de un Estado en Venezuela, llamado Barinas que esta lejos de la capital y su mamá nos cuenta todas las dificultades que tuvo que pasar para que su hija pudiera salvarse.
No se pierdan este episodio que es la historia de muchas madres con hijos que nacen con CC en un país de bajos recursos.
Organizaciones mencionadas en nuestro programa:
https://fundacionestrellitadebelen.org
Enlaces a las páginas de podcasts y redes sociales de 'Guerreros Del Corazón':
Instagram: @guerrerosdelcorazon
Facebook: https://www.facebook.com/Guerreros-Del-Coraz%C3%B3n-106786128027732
YouTube: https://www.youtube.com/channel/UCGPKwIU5M_YOxvtWepFR5Zw
website: https://www.hug-podcastnetwork.com/guerreros-del-corazoacuten.html
Conviértete en un seguidor de este podcast: https://www.spreaker.com/podcast/guerreros-del-corazon--4731556/support.
No se pierdan este episodio que es la historia de muchas madres con hijos que nacen con CC en un país de bajos recursos.
Organizaciones mencionadas en nuestro programa:
https://fundacionestrellitadebelen.org
Enlaces a las páginas de podcasts y redes sociales de 'Guerreros Del Corazón':
Instagram: @guerrerosdelcorazon
Facebook: https://www.facebook.com/Guerreros-Del-Coraz%C3%B3n-106786128027732
YouTube: https://www.youtube.com/channel/UCGPKwIU5M_YOxvtWepFR5Zw
website: https://www.hug-podcastnetwork.com/guerreros-del-corazoacuten.html
Conviértete en un seguidor de este podcast: https://www.spreaker.com/podcast/guerreros-del-corazon--4731556/support.
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
(00:00):
She told me, Mom. Wewhen we get up and when we sleep
we ask God a lot and wepray and she tells me Mom. I
don' t want to die.I don' t want to die,
not for the first to die,he tells me, but because I don
' t want to leave you alone. Welcome to your heart warriors program fighting
(00:23):
congenital heart disease. I am MaltaRaquel Montero, one of the hosts of
this program, and I am alsothe mother of a warrior of heart.
I am accompanied in this interview byBelén Blanc, another warrior of heart,
and luissaciaer mother of a warrior ofheart. In today' s program we
will be talking to neither Anna Bordof her daughter Juliet anymore In the different
(00:48):
segments we will know about the conditionsthat affect her daughter and at what time
she was diagnosed. We will talkabout the challenges you have had to overcome
in order for your daughter to havethe necessary treatments, since the corrective appointments
that princess is not available in publichospitals in Venezuela, in addition to knowing
how your economy stands in the wayof getting juliet to be a candidate for
(01:10):
it. In conclusion, you willtell us about the prognosis regarding Juliette'
s condition. Welcome to heart warriors, Janiela. Thank you, thank you,
Janiela. When you knew Juliette hada heart defect in her clutch or
not at birth, she discovered hercongenital heart defect after three months of birth.
(01:36):
It' s your pediatrician, DrCastillo, a routine consult heard you
sound like a tip. From therehe told me to Dr Justo Santiago,
where, in the midst of medicalchecks, this electrocardiogram and echo oa was
(01:57):
diagnosed the heart disease that currently has, which is Einstein type d OK anomaly
and you could explain more or lessthe conditions of it. They have pneumonia
and what else they have. Shehas some kind of high blood pressure or
something else that, apart from normalin her, has severe pulmonary hypertension.
(02:20):
That' s why he was diagnosedwithout benafir, because by his growth,
by the growth of his heart,she gets tired faster, becomes cyanotic and
this good. If she, otherthan that, has that, she can
have pulmonary hypertension right now. Atthe moment he is suffering from the care
(02:43):
he suffers from high pension. Thedischarge also has it alt So, that
' s why the doctor sent youthis medication as for attention, as for
hyperfection. Pulmonary exactly and you canexplain what situations to face in Venezuela.
You found out in juliet' scondition The truth, Mrs Bell, was
(03:05):
a long process, it was veryhard, It was of anguish, pain,
suffering. At the moment I foundout that my child had this heart
disease with a severe gender, shegave me the obligation to present myself in
many institutions, both political and medical, through despair, because, as she
(03:30):
explained, she is my first daughterin the light of my eyes, in
my herrera and I began to mobilize. They sent me from medical centers,
private institutions, from private institutions topublic medical centers and so they had me
until Dr Justo Santiago gave it tome in a private clinic called Clínica San
(03:54):
Juan, here in Venezuela, BarinaState. He saw me here, He
made me reck de la o porel Estado Mérida, because in the Latin
American children' s cardiology in Caracas, they mounted that cardiological lock through link
reck. Then I had an arduousprocess of traveling from here from my State
(04:15):
to the State of Mérida. Itwas very hard, because we had to
travel the girl with her condition andmy person had to travel almost sixteen hours
to get to Mérida. Give him, what do you say I told my
baby to go around the world toachieve this goal? Why go around the
world because my daughter, because ofthe altitude and precipitation of the moor,
(04:39):
couldn' t go through there.Then we had to go around the world
in order to get to merid.As I told you, it was an
arduous process, but the goal wasachieved, which was to reach the Children
' s Cardiology Hospital, where theyperformed their first operation, which was a
directional glenb. It happens that andbecause of the situation in the country,
(05:01):
that for no one is a secret, as is the situation in our country.
After that operation, she had heroperation on both of them, She
was operated on at the age oftwo, at the age of three four
she had her plumber operation pitifully,I say pitifully. From there they could
do nothing more for my daughter,because the bermodynamy device always remained damaged in
(05:24):
the children' s cardiological hospital.There were many or they who were on
a waiting list for a diagnostic catheterization. And well, at this point in
life, my daughter can no longerbe operated on, she can no longer
be touched by the pulmonary hypertension shepresents, by how she is right now.
Physically she looks very good or stable, but good inside is a pandora
(05:47):
box. Then she' s gone. The doctors already spoke to me were
very clear with me, already toldme that she was in hand. I
don' t know God. Andgood visits to the psychologist, because for
no one it is easy to tellsuch things to one as a warrior mother,
(06:11):
a fighter who has been one withour children. On that condition it
hasn' t been easy, butas I said right now, there'
s always a first time. It' s one more experience and as I
tell my daughter, it' syou and me, Mommy, against the
world. We' ve never stopped, we' ve never stopped. Thank
you very much to the Estrellitas Foundationin Bethlehem for providing us with medical support,
(06:34):
medical consultations to the girl. Iam not lacking her medicines, she
adores her foundation, because Mrs Belénhas always been on the lookout for our
children in the sense of their medicines, their nutrients, their vitamins, their
Decembers, their little toys. And, well, my daughter, she adores,
(06:57):
she adores, Mrs Bilén, that' s like her second mom.
Oh, thank you, Mira.Before I ask you the other question,
first I want to explain that Einstein' s abnormality is a tricuspid valve defect
that separates the right atrium, theCavity receives you into the body' s
blood, the right ventricle, thecavity that pumps the blood skyn lungs,
(07:21):
that is, that she combines badblood with grandma. What changes it brought
to your family' s life,the diagnoses and the situations you' ve
lived and are about to live.Well, actually, Mrs Bren as I
said right now, I' vesaid alone with my daughter, by myself.
It' s us, the threeof us, because I have a
(07:45):
boy, but it' s alwaysbeen us three stories. My mother always
supported me, she has always supportedme, she has accompanied me to the
medical consultations in Mérida, Caracas whenthey operated on her, because it is
a hard process, quite hard.She lasted in operations. When I was
operated on by the directional blemmy,she lasted and was put in at eleven
in the morning. It was nineo' clock at night and we didn
(08:07):
' t know anything about her untilten o' clock at night that they
put me in intensive care. Andyou can tell from her my family has
taken it more than anything. Mymother, who has supported me in this
arduous process. It wasn' teasy. It hasn' t been easy
for my mother, because, apartfrom Julie from her congenital heart disease,
(08:30):
she, when I was eleven monthsold, gave me one she presented me
with a case of viral meningitis.Then you can imagine that Einstein' s
anomaly vial with viral meningitis. Itlasted twenty- one days for the child,
almost that we could say in acoma, because we knew she was
alive. It was because of theconvulsions I had right away. So,
(08:52):
I can say that my daughter isa miracle that my daughter is on her
feet, that she understands and processes. All that is happening is a miracle
of God. This content is notintended to replace diagnostic advice or professional medical
(09:16):
treatment. The opinions expressed in thispodcast are not those of Horge Unighted Love,
but those of the hosts and guestsand they intend to generate a debate
on issues related to congenital heart disease. Welcome back. I' m Luis
(09:41):
gallanting so many of the pause.We met about the situations of Juliette and
her mother. It' s Daniellanow. You can explain to us how
you deal with the different conditions presentedby little Well, the truth is pretty
hard because I, right now,am unemployed. It' s since I
discovered your congenital heart disease, Ihaven' t had eyes for anything else,
(10:07):
but only for her. And it' s pretty hard because the drugs
here are very expensive and their medicationscan' t be lacking. But well,
as always said to me, Ihave never lacked God and always solves.
But here in Venezuela, it's nothing, nothing, nothing easy.
A heart defect like that of mydaughter and like the different Tardiopathy that
(10:30):
exist for Venezuelan mothers, either inmy state, in the state of merited
trujillo, in different states, becausenot only my daughter presents this heart disease,
but there are many, many childrenwith these heart diseases. And it
is sad and painful that, becauseof this Government, in this Government,
(10:50):
this process we are going through,our children do not have a quality of
life, they do not take usinto account, they do not listen to
the despair of us the most,with children with heart disease, they do
not listen to us, that I, in order for them to operate my
(11:11):
daughter, I had to fight togo assemblies with her, almost pregnancies,
almost kneeling so that they could attendto me, so that they could operate
on me. It' s notfair, it' s not fair,
it' s not easy. ButI have always said that Rio there is
a God who to die and hedoes not forsake us. And well,
we are all, for in thewill of God and waiting, for all
the best and for my daughter,for she continues her process. As I
(11:33):
say to her, Mames, it' s you and me against the world,
let' s fight together and neverdecay, never decay. Always fight
and I will always fight for herbeautiful, the girl to hear those words.
A real grrea mom is what sheneeds, that, that beautiful little
(11:54):
girl who' s out there fightingnext to you, you could tell me
what the doctors are explaining about him, why you can' t do the
plumbing surgery. Well, the doctorstell me that she can no longer have
such surgery because, at least herdoctor right now tells me that it is
(12:15):
already a risk, first because ofthe hypertension, fulmonar that she has.
He says that only to enter theoperating room is to place the intubation,
to put the anesthesis, that thatis already a risk to her. I
(12:35):
mean, she' s already untouchable, because she can' t touch her
anymore because she has her pulmonary hypertensionvery strong, besides that not only her
heart is receding, but her moreorgans are also rebred, her lungs,
her liver. Then he says hecan have surgery. Yes, you can
operate your heart, but the restof your organs already as they would collax,
(13:03):
so that' s why you riskoperating it as it is. It
' s the risk then. Idecided two years ago, when she made
me diagnostic carteterism, in the LatinAmerican children' s carteological, who told
me that she could no longer touchher because she had a very strong pulmonary
hypertension, which is a very riskyoperation that if I risked that I would
(13:26):
most likely take my daughter in acoffin then, because I decided to take
my daughter to her feet and goodthat it is God' s will.
Only he knows how long my daughteris here and for we are always prepared
psychologically for anything. Waw Juan,how much strength and you hear in caud
(13:50):
your cord open And truth is thatit is completely admirable to hear your strength
and your preparation to accompany on thisroad to Juliet And you have all my
admiration. And Janiela, like Luisatold you, you also have my admiration,
(14:11):
because that force that you' reshowing will help Juliet also have the
strength to go ahead with this processis very difficult when we meet doctors like
it' s not their son who' s going through the situation, because
they say things without thinking, orthey say things like they understand they should
(14:31):
say it without thinking how much harmthey can be doing to us, as
parents who are in that struggle andhow this affects our children' s health
in some way. So, really, because I' m going to dick
you like Luisa said, and admiration, because this is what helps us to
move forward the strength and a faithso great that we can have in God.
(14:56):
That' s right, Jack andher. I want to ask you,
and tell us a little bit,how juliet has taken his congenital heart
disease, what you have explained tohim how far you have been able to
(15:18):
transmit it, and how he hasresponded to what you have been able to
share about his congenital heart disease.Wow. It wasn' t easy.
It hasn' t been easy,because it' s a pretty complicated subject
and she' s big, thatshe' s twelve years old. Sure,
as I said before, as shegave me a viral onjetis mind her
brain, she' s twelve yearsold, but her brain is like a
(15:39):
brain of a six- year-old girl. So, that' s
why I say it' s prettycomplicated to explain to her. The other
day, she told me Mom,we, when we get up and when
we go to bed, we askGod a lot and we cry. And
she tells me, Mom, Idon' t want to die. I
don' t want to die,not for remorning death, he tells me,
(16:00):
but because I don' t wantto leave you alone. And it
' s pretty strong. You knowit' s a knot, like the
one who says in your throat thatyour daughter tells you that, I mean,
your princess the light of your eyestells you that and I, with
that knot in your throat, withouta tear my face I say, Mommy,
you' re not going to die. You' re not going to
(16:22):
die. You' re never gonnado it, because we don' t
die, we transcend and there's always gonna be a place where we
' re gonna meet again. Soyou don' t have to be afraid
of death, because it' sa process in which we' re all
going through that process. I don' t know. I told him if
I die first than you why mylove, because today I am and tomorrow
I don' t know? Todayyou are and tomorrow I don' t
(16:45):
know? I tell you then it' s something that I mean, it
' s a subject that we don' t have to worry about. We
' re going to live, Itell you, we' re going to
live today as if it were thelast day, and I always tell her
the same thing so she doesn't feel, because she always tells me
the same thing. No more I' m afraid to die, because I
(17:06):
don' t want to leave youalone. Then imagine it' s strong
I can' t stand to cry, I can' t stand everything my
daughter doesn' t see a tearon my face, because she can'
t see me defeated, not ever, because I' ve always been everything
to her. Then, as Idefeat myself, as I weep, as
(17:26):
I show her fear, she's going to kid me. Then it
' s not the idea. Idon' t always have to be like
the one who says on a cannon' s foot either. For her I
always have to be there strong,even if it' s very painful.
We always have to be there.That' s why thank God, my
daughter, with all the conditions andprocesses, for the clinical cases she'
(17:48):
s been through and she' sovercome it all. It wasn' t
easy, no, it wasn't, but it wasn' t impossible
either. Oh no, I couldn' t cry the truth here. Unbelievable
what you just said. Amazing ofyour words and the wisdom in each of
them from their embroiderment. And Ireally admire you so much. I honor
(18:11):
you, you have my soul,my heart is with you. And this
reminds me a lot of what Bethlehemmentioned in the interview he even did to
me when he said the mothers ofthe cardiopaths are the best mothers in the
world. And I don' tknow if the best ones, but I
(18:33):
think they' re the chosen onesGod chose them and pointed to each of
them because that strength, that interest, and that' s how you get
over everything you' re going throughon this road. Actually, Juliet couldn
' t have a better mother toaccompany her in this whole process. So
(18:56):
nothing, my heart is with you. Support accompanies you with abraxo from here
and of age. I think I' m gonna walk you all this way.
Thank you, thank you, thankyou, warriors of the heart.
It is a Hearth Unite t Glodepresentation and is part of the Podcast Network
(19:21):
hog. Hogstrea hug And are theacronyms of Horthy Night de glob Horge nightd
Love is a non- profit organizationdedicated to providing resources to the community of
congenital heart disease to raise, empowerand enrich the lives of members of our
community. If you want to accessfree resources from the congenital heart defects community,
(19:49):
visit our enw web site with geneticHeart Defex com for information near hospitals
that treat children, summer camps forsurvivors and much more before the break we
were talking about the challenges of Janielaand Juliet in this process of living with
(20:12):
a heart disease already Niela. Whatyou had to do financially to deal with
the high costs of Juliet' streatments. Well, I, uh,
I actually do a little disarray.We, the Venezuelan mothers, are very
warriors and we always get them forour medical expenses or for the treatments of
(20:36):
our girls. I' m inhere, I' m in rifan.
Thank God. Yulie has been avery blessed child and my aunts and aunts
are there in the United States andare always on the lookout for her.
They help me or support me withtheir cousins too with their medical consultations.
I haven' t been alone.Thank God. My family has supported me
(21:00):
good this to go now. I' ve supported myself. And when I
feel, as we say here inVenezuela, a little tight, I look
for ways. I here haste,I this ruffa, I train boleiboll I
am athlete lots of championships, Imake harvests good, I make to move
(21:25):
heaven and earth so that my daughterdoes not miss a graze and we go
in the same line as what Itold you. Right now, that fortress
that you show moves heaven and earthin favor of it. That' s
what she sees that' s goingto help her get through, because right
now you said it' s alittle hard to explain. However, when
she tells you she doesn' twant to leave you alone, she'
(21:45):
s a pretty mature thought. It' s not because I' m afraid,
it' s just that I don' t want to leave you alone.
Yeah, so, one way oranother, despite the circumstances that have
led to her not having the mindsetof her age, she' s learning
existing and that' s thanks toeverything you do. Yes, it is
and in this term of everything thathas told us this great faith that you
(22:07):
have in the Lord everything you havefought, but what a lesson you have
learned by having to face there boththe health situation and the economic situation.
That you can tell people you've learned well look at the truth.
You learn a lot, you know, you learn to value. You learn
from all the truth. There aremothers who do not want their children healthy
(22:33):
children in the street abandoned by theirmothers, while we fight hard for our
children so that they are well,so that they do not lack anything,
so that they do not get sickso that they are calm. One does
everything to the impossible. It makesa real one. I, more than
anything else, would give as amessage of awareness to all those mothers who
(22:57):
want their children, who want them, to value them, because there is
nothing stronger than having a child,not so much with congenital heart disease,
but with any condition is not easyAnd, as Luisa said, this God
chooses us. That' s apurpose. God chooses us for us to
(23:19):
help our children, not to forsakethem. Me, at least me my
daughter. I don' t seeher as with a girl with Einstein or
a girl with congenital lateopathy. Idon' t see her as my daughter.
This is my princess, the lightof my eyes, that accompanies me
everywhere. Nobody' s asking me. But my fight with my daughter has
(23:41):
been so big, I' mtaking her to high school. We climbed
three floors of stairs so that shefinished her high school stage. The same
can sub- basic. I wasriding her on my back, carrying her
up because they were studying on thetop floor of the campus that was a
(24:03):
third floor, which she couldn't climb all those stairs and I,
I, Jack Niella Sara Embroidered IslandWin took her and told Mommy, you
' re going to go to schoollike Mommy, I can' t go
up so many stairs. If wecan get on my man I' d
take you. And so she finishedher sixth grade and now, thank God.
It is in the first year andpassed for the second year and it
(24:27):
has been the same process as whenhe has this traveler who is fifty sixty
years old, he is left withoutcolumns. I don' t care,
I don' t care, butI am with joy and with my heart
full, with my heart great andsatisfied that I helped my daughter, that
I helped my daughter finish and theyfinished one stage, one more goal.
(24:48):
That' s why I always saythose mothers who have their children who abandon
them, they abandon them, theydon' t pay attention to them,
they want them, they want them, because it' s not easy to
have a child with a disability orboth motor condition and congenital heart disease.
It' s not easy. Theseare proofs that God puts us on our
(25:11):
way. I have always said Goddoes not put burdens that one cannot bear,
and I have always been and willbe for my daughter until God so
decides. Amen already has what Juliet' s prognosis is right now and for
the next few years. You alreadyknow you can' t do a plum
(25:32):
surgery so what' s going tohappen, because she' s only medicated.
Did they send you their meds forthe pension? Did they send you
their meds for high blood pressure?Pulmonating their asphyrins, their anticonvulsants, because
they already take ticonvulsants. She's also only medicated, and, as
Dr Castillo told me, there's another castle in the cardiology infant Only
(25:56):
God knows the moment, the timeyour daughter is in, you can die
before and she' ll follow thatone doesn' t know. Only God
knows. And he' s grateful. No matter what happens or whatever happens.
I am grateful to God for givingme the girl or giving me the
most wonderful girl of this boy.It is wonderful and she has given you
(26:22):
the most wonderful child in the world. And Julian has definitely given the most
wonderful mother in the world, becauseyour effort would have already had her reward.
That' s right, what's the advice you' d give
to your country' s doctors?According to your experience lived the truth that
they are not so with him thatthey know how to say things, because
(26:45):
they can be doctors, but theyare not God and they are not so
hard, because this is a processand this is a stage that not everyone
takes it as I take it.There are mothers who are desperate, there
are mothers who are uff there aremothers who don' t know what to
do and a doctor comes to saythat their son is going to be taken
(27:07):
out of a coffin, that theirson is not going to live, that
he is their son, that isto say the medium negative things, indifferently
if he is going to die tomorrowthe day after or not going to die,
that is to say they are notthe ones to diagnose something so great.
Only that can provide in God thatthey are not so cruel, that
they know how to say things,that they have a little bit of humanity,
(27:33):
of humanity, because this is notan easy process. This is not
an easy process. We' realways going to see as who says,
as a hope and get to amedical center where they tell you take your
son, because your son is goingto die tomorrow. I mean, it
' s not easy, it's not easy, and it' s
not just happened to me, it' s happened to a lot of mommies
(27:56):
here in Venezuela, so they geta little concintiated and that they know how
to say things, not that theylie to us, because neither with lies
or trying to lie to us.We' re either gonna feel good or
we' re gonna feel bad orworse. But let them not be so
cruel, because they are not Godto dispose of the lives of our children.
(28:18):
A little empathy is all we ask. I' m Marta, sorry
you know people, it' sthe conversation. I think I always tell
you on every show we have.Maybe it happened to me, Yaniela,
my mom was told that I wasn' t going to survive even six months.
And what I have is a palliativejust like juliet and I' m
(28:42):
still here so God is the lastone, yes, that' s right,
Mr ablemy Yo. That' swhy I told this doctor the castle,
give me the discharge, my daughter, that my daughter is leaving here,
it' s him and I againstthe world and no one is going
to tell us here that my daughteris going to come out in a coffin
that can' t be operated.I didn' t get it, but
(29:03):
I took it and that it's just God and that I have the
will on it exactly like you saidright now. You have to say things
the way I say it. It' s not that either because I want
to know how things are and Iwant everything to be as transparent as possible
for me to know how I'm going to work it, but it
(29:26):
' s not like you' regoing to tell me, as if I
' m a rock that I don' t feel that way. Well,
now, Niela, we are verygrateful that you have been with us today
on the program, that you havebrought us your experiences, that you have
strengthened that wonderful faith in the Lordbecause hearing that hope with that faith gives
(29:49):
energy to those who listen to you, both us and these mothers and these
people who are going to be listeningto you in the near future. We
know that that' s going tobe like an injection of energy that if
I' m feeling down and Ithink I' m not going to be
able to with this situation that I' m living in, there' s
(30:11):
a person who' s having ahard time and is hoping well put.
So, thanks for coming on theshow and Daniela, thanks to you.
Venezuela is experiencing a very serious healthcrisis. Four thousand two hundred children are
born with congenital caliopathy every year andless than twenty percent receive the necessary treatments.
Many high- risk surgeries are notexecuted and many ninjas, unfortunately,
die because parents do not have howto pay for surgeries in private hospitals.
(30:36):
They need our help. Congenital caliopathyis a condition that affects children around the
world and thus concludes this episode ofheart warriors. Thank you for listening to
us today You enjoyed this episode.Please leave a review of our podcasts on
our website side double or double doublepoint Hearst United Club, dot Ork and
(30:56):
remember friends, never give up.Thank you again for joining us this week.
We hope you have been inspired andempowered to become an advocate of the
heart- cemented congenital heart defect community, with your hosts Belene Blanton, Geneferkinguina
(31:18):
and Marta Montero. It is producedmonthly and can be heard wherever you have
access to Pardcast. The new episodesare broadcast on the second Saturday of the month
She told me, Mom. Wewhen we get up and when we sleep
we ask God a lot and wepray and she tells me Mom. I
don' t want to die.I don' t want to die,
not for the first to die,he tells me, but because I don
' t want to leave you alone. Welcome to your heart warriors program fighting
(00:23):
congenital heart disease. I am MaltaRaquel Montero, one of the hosts of
this program, and I am alsothe mother of a warrior of heart.
I am accompanied in this interview byBelén Blanc, another warrior of heart,
and luissaciaer mother of a warrior ofheart. In today' s program we
will be talking to neither Anna Bordof her daughter Juliet anymore In the different
(00:48):
segments we will know about the conditionsthat affect her daughter and at what time
she was diagnosed. We will talkabout the challenges you have had to overcome
in order for your daughter to havethe necessary treatments, since the corrective appointments
that princess is not available in publichospitals in Venezuela, in addition to knowing
how your economy stands in the wayof getting juliet to be a candidate for
(01:10):
it. In conclusion, you willtell us about the prognosis regarding Juliette'
s condition. Welcome to heart warriors, Janiela. Thank you, thank you,
Janiela. When you knew Juliette hada heart defect in her clutch or
not at birth, she discovered hercongenital heart defect after three months of birth.
(01:36):
It' s your pediatrician, DrCastillo, a routine consult heard you
sound like a tip. From therehe told me to Dr Justo Santiago,
where, in the midst of medicalchecks, this electrocardiogram and echo oa was
(01:57):
diagnosed the heart disease that currently has, which is Einstein type d OK anomaly
and you could explain more or lessthe conditions of it. They have pneumonia
and what else they have. Shehas some kind of high blood pressure or
something else that, apart from normalin her, has severe pulmonary hypertension.
(02:20):
That' s why he was diagnosedwithout benafir, because by his growth,
by the growth of his heart,she gets tired faster, becomes cyanotic and
this good. If she, otherthan that, has that, she can
have pulmonary hypertension right now. Atthe moment he is suffering from the care
(02:43):
he suffers from high pension. Thedischarge also has it alt So, that
' s why the doctor sent youthis medication as for attention, as for
hyperfection. Pulmonary exactly and you canexplain what situations to face in Venezuela.
You found out in juliet' scondition The truth, Mrs Bell, was
(03:05):
a long process, it was veryhard, It was of anguish, pain,
suffering. At the moment I foundout that my child had this heart
disease with a severe gender, shegave me the obligation to present myself in
many institutions, both political and medical, through despair, because, as she
(03:30):
explained, she is my first daughterin the light of my eyes, in
my herrera and I began to mobilize. They sent me from medical centers,
private institutions, from private institutions topublic medical centers and so they had me
until Dr Justo Santiago gave it tome in a private clinic called Clínica San
(03:54):
Juan, here in Venezuela, BarinaState. He saw me here, He
made me reck de la o porel Estado Mérida, because in the Latin
American children' s cardiology in Caracas, they mounted that cardiological lock through link
reck. Then I had an arduousprocess of traveling from here from my State
(04:15):
to the State of Mérida. Itwas very hard, because we had to
travel the girl with her condition andmy person had to travel almost sixteen hours
to get to Mérida. Give him, what do you say I told my
baby to go around the world toachieve this goal? Why go around the
world because my daughter, because ofthe altitude and precipitation of the moor,
(04:39):
couldn' t go through there.Then we had to go around the world
in order to get to merid.As I told you, it was an
arduous process, but the goal wasachieved, which was to reach the Children
' s Cardiology Hospital, where theyperformed their first operation, which was a
directional glenb. It happens that andbecause of the situation in the country,
(05:01):
that for no one is a secret, as is the situation in our country.
After that operation, she had heroperation on both of them, She
was operated on at the age oftwo, at the age of three four
she had her plumber operation pitifully,I say pitifully. From there they could
do nothing more for my daughter,because the bermodynamy device always remained damaged in
(05:24):
the children' s cardiological hospital.There were many or they who were on
a waiting list for a diagnostic catheterization. And well, at this point in
life, my daughter can no longerbe operated on, she can no longer
be touched by the pulmonary hypertension shepresents, by how she is right now.
Physically she looks very good or stable, but good inside is a pandora
(05:47):
box. Then she' s gone. The doctors already spoke to me were
very clear with me, already toldme that she was in hand. I
don' t know God. Andgood visits to the psychologist, because for
no one it is easy to tellsuch things to one as a warrior mother,
(06:11):
a fighter who has been one withour children. On that condition it
hasn' t been easy, butas I said right now, there'
s always a first time. It' s one more experience and as I
tell my daughter, it' syou and me, Mommy, against the
world. We' ve never stopped, we' ve never stopped. Thank
you very much to the Estrellitas Foundationin Bethlehem for providing us with medical support,
(06:34):
medical consultations to the girl. Iam not lacking her medicines, she
adores her foundation, because Mrs Belénhas always been on the lookout for our
children in the sense of their medicines, their nutrients, their vitamins, their
Decembers, their little toys. And, well, my daughter, she adores,
(06:57):
she adores, Mrs Bilén, that' s like her second mom.
Oh, thank you, Mira.Before I ask you the other question,
first I want to explain that Einstein' s abnormality is a tricuspid valve defect
that separates the right atrium, theCavity receives you into the body' s
blood, the right ventricle, thecavity that pumps the blood skyn lungs,
(07:21):
that is, that she combines badblood with grandma. What changes it brought
to your family' s life,the diagnoses and the situations you' ve
lived and are about to live.Well, actually, Mrs Bren as I
said right now, I' vesaid alone with my daughter, by myself.
It' s us, the threeof us, because I have a
(07:45):
boy, but it' s alwaysbeen us three stories. My mother always
supported me, she has always supportedme, she has accompanied me to the
medical consultations in Mérida, Caracas whenthey operated on her, because it is
a hard process, quite hard.She lasted in operations. When I was
operated on by the directional blemmy,she lasted and was put in at eleven
in the morning. It was nineo' clock at night and we didn
(08:07):
' t know anything about her untilten o' clock at night that they
put me in intensive care. Andyou can tell from her my family has
taken it more than anything. Mymother, who has supported me in this
arduous process. It wasn' teasy. It hasn' t been easy
for my mother, because, apartfrom Julie from her congenital heart disease,
(08:30):
she, when I was eleven monthsold, gave me one she presented me
with a case of viral meningitis.Then you can imagine that Einstein' s
anomaly vial with viral meningitis. Itlasted twenty- one days for the child,
almost that we could say in acoma, because we knew she was
alive. It was because of theconvulsions I had right away. So,
(08:52):
I can say that my daughter isa miracle that my daughter is on her
feet, that she understands and processes. All that is happening is a miracle
of God. This content is notintended to replace diagnostic advice or professional medical
(09:16):
treatment. The opinions expressed in thispodcast are not those of Horge Unighted Love,
but those of the hosts and guestsand they intend to generate a debate
on issues related to congenital heart disease. Welcome back. I' m Luis
(09:41):
gallanting so many of the pause.We met about the situations of Juliette and
her mother. It' s Daniellanow. You can explain to us how
you deal with the different conditions presentedby little Well, the truth is pretty
hard because I, right now,am unemployed. It' s since I
discovered your congenital heart disease, Ihaven' t had eyes for anything else,
(10:07):
but only for her. And it' s pretty hard because the drugs
here are very expensive and their medicationscan' t be lacking. But well,
as always said to me, Ihave never lacked God and always solves.
But here in Venezuela, it's nothing, nothing, nothing easy.
A heart defect like that of mydaughter and like the different Tardiopathy that
(10:30):
exist for Venezuelan mothers, either inmy state, in the state of merited
trujillo, in different states, becausenot only my daughter presents this heart disease,
but there are many, many childrenwith these heart diseases. And it
is sad and painful that, becauseof this Government, in this Government,
(10:50):
this process we are going through,our children do not have a quality of
life, they do not take usinto account, they do not listen to
the despair of us the most,with children with heart disease, they do
not listen to us, that I, in order for them to operate my
(11:11):
daughter, I had to fight togo assemblies with her, almost pregnancies,
almost kneeling so that they could attendto me, so that they could operate
on me. It' s notfair, it' s not fair,
it' s not easy. ButI have always said that Rio there is
a God who to die and hedoes not forsake us. And well,
we are all, for in thewill of God and waiting, for all
the best and for my daughter,for she continues her process. As I
(11:33):
say to her, Mames, it' s you and me against the world,
let' s fight together and neverdecay, never decay. Always fight
and I will always fight for herbeautiful, the girl to hear those words.
A real grrea mom is what sheneeds, that, that beautiful little
(11:54):
girl who' s out there fightingnext to you, you could tell me
what the doctors are explaining about him, why you can' t do the
plumbing surgery. Well, the doctorstell me that she can no longer have
such surgery because, at least herdoctor right now tells me that it is
(12:15):
already a risk, first because ofthe hypertension, fulmonar that she has.
He says that only to enter theoperating room is to place the intubation,
to put the anesthesis, that thatis already a risk to her. I
(12:35):
mean, she' s already untouchable, because she can' t touch her
anymore because she has her pulmonary hypertensionvery strong, besides that not only her
heart is receding, but her moreorgans are also rebred, her lungs,
her liver. Then he says hecan have surgery. Yes, you can
operate your heart, but the restof your organs already as they would collax,
(13:03):
so that' s why you riskoperating it as it is. It
' s the risk then. Idecided two years ago, when she made
me diagnostic carteterism, in the LatinAmerican children' s carteological, who told
me that she could no longer touchher because she had a very strong pulmonary
hypertension, which is a very riskyoperation that if I risked that I would
(13:26):
most likely take my daughter in acoffin then, because I decided to take
my daughter to her feet and goodthat it is God' s will.
Only he knows how long my daughteris here and for we are always prepared
psychologically for anything. Waw Juan,how much strength and you hear in caud
(13:50):
your cord open And truth is thatit is completely admirable to hear your strength
and your preparation to accompany on thisroad to Juliet And you have all my
admiration. And Janiela, like Luisatold you, you also have my admiration,
(14:11):
because that force that you' reshowing will help Juliet also have the
strength to go ahead with this processis very difficult when we meet doctors like
it' s not their son who' s going through the situation, because
they say things without thinking, orthey say things like they understand they should
(14:31):
say it without thinking how much harmthey can be doing to us, as
parents who are in that struggle andhow this affects our children' s health
in some way. So, really, because I' m going to dick
you like Luisa said, and admiration, because this is what helps us to
move forward the strength and a faithso great that we can have in God.
(14:56):
That' s right, Jack andher. I want to ask you,
and tell us a little bit,how juliet has taken his congenital heart
disease, what you have explained tohim how far you have been able to
(15:18):
transmit it, and how he hasresponded to what you have been able to
share about his congenital heart disease.Wow. It wasn' t easy.
It hasn' t been easy,because it' s a pretty complicated subject
and she' s big, thatshe' s twelve years old. Sure,
as I said before, as shegave me a viral onjetis mind her
brain, she' s twelve yearsold, but her brain is like a
(15:39):
brain of a six- year-old girl. So, that' s
why I say it' s prettycomplicated to explain to her. The other
day, she told me Mom,we, when we get up and when
we go to bed, we askGod a lot and we cry. And
she tells me, Mom, Idon' t want to die. I
don' t want to die,not for remorning death, he tells me,
(16:00):
but because I don' t wantto leave you alone. And it
' s pretty strong. You knowit' s a knot, like the
one who says in your throat thatyour daughter tells you that, I mean,
your princess the light of your eyestells you that and I, with
that knot in your throat, withouta tear my face I say, Mommy,
you' re not going to die. You' re not going to
(16:22):
die. You' re never gonnado it, because we don' t
die, we transcend and there's always gonna be a place where we
' re gonna meet again. Soyou don' t have to be afraid
of death, because it' sa process in which we' re all
going through that process. I don' t know. I told him if
I die first than you why mylove, because today I am and tomorrow
I don' t know? Todayyou are and tomorrow I don' t
(16:45):
know? I tell you then it' s something that I mean, it
' s a subject that we don' t have to worry about. We
' re going to live, Itell you, we' re going to
live today as if it were thelast day, and I always tell her
the same thing so she doesn't feel, because she always tells me
the same thing. No more I' m afraid to die, because I
(17:06):
don' t want to leave youalone. Then imagine it' s strong
I can' t stand to cry, I can' t stand everything my
daughter doesn' t see a tearon my face, because she can'
t see me defeated, not ever, because I' ve always been everything
to her. Then, as Idefeat myself, as I weep, as
(17:26):
I show her fear, she's going to kid me. Then it
' s not the idea. Idon' t always have to be like
the one who says on a cannon' s foot either. For her I
always have to be there strong,even if it' s very painful.
We always have to be there.That' s why thank God, my
daughter, with all the conditions andprocesses, for the clinical cases she'
(17:48):
s been through and she' sovercome it all. It wasn' t
easy, no, it wasn't, but it wasn' t impossible
either. Oh no, I couldn' t cry the truth here. Unbelievable
what you just said. Amazing ofyour words and the wisdom in each of
them from their embroiderment. And Ireally admire you so much. I honor
(18:11):
you, you have my soul,my heart is with you. And this
reminds me a lot of what Bethlehemmentioned in the interview he even did to
me when he said the mothers ofthe cardiopaths are the best mothers in the
world. And I don' tknow if the best ones, but I
(18:33):
think they' re the chosen onesGod chose them and pointed to each of
them because that strength, that interest, and that' s how you get
over everything you' re going throughon this road. Actually, Juliet couldn
' t have a better mother toaccompany her in this whole process. So
(18:56):
nothing, my heart is with you. Support accompanies you with abraxo from here
and of age. I think I' m gonna walk you all this way.
Thank you, thank you, thankyou, warriors of the heart.
It is a Hearth Unite t Glodepresentation and is part of the Podcast Network
(19:21):
hog. Hogstrea hug And are theacronyms of Horthy Night de glob Horge nightd
Love is a non- profit organizationdedicated to providing resources to the community of
congenital heart disease to raise, empowerand enrich the lives of members of our
community. If you want to accessfree resources from the congenital heart defects community,
(19:49):
visit our enw web site with geneticHeart Defex com for information near hospitals
that treat children, summer camps forsurvivors and much more before the break we
were talking about the challenges of Janielaand Juliet in this process of living with
(20:12):
a heart disease already Niela. Whatyou had to do financially to deal with
the high costs of Juliet' streatments. Well, I, uh,
I actually do a little disarray.We, the Venezuelan mothers, are very
warriors and we always get them forour medical expenses or for the treatments of
(20:36):
our girls. I' m inhere, I' m in rifan.
Thank God. Yulie has been avery blessed child and my aunts and aunts
are there in the United States andare always on the lookout for her.
They help me or support me withtheir cousins too with their medical consultations.
I haven' t been alone.Thank God. My family has supported me
(21:00):
good this to go now. I' ve supported myself. And when I
feel, as we say here inVenezuela, a little tight, I look
for ways. I here haste,I this ruffa, I train boleiboll I
am athlete lots of championships, Imake harvests good, I make to move
(21:25):
heaven and earth so that my daughterdoes not miss a graze and we go
in the same line as what Itold you. Right now, that fortress
that you show moves heaven and earthin favor of it. That' s
what she sees that' s goingto help her get through, because right
now you said it' s alittle hard to explain. However, when
she tells you she doesn' twant to leave you alone, she'
(21:45):
s a pretty mature thought. It' s not because I' m afraid,
it' s just that I don' t want to leave you alone.
Yeah, so, one way oranother, despite the circumstances that have
led to her not having the mindsetof her age, she' s learning
existing and that' s thanks toeverything you do. Yes, it is
and in this term of everything thathas told us this great faith that you
(22:07):
have in the Lord everything you havefought, but what a lesson you have
learned by having to face there boththe health situation and the economic situation.
That you can tell people you've learned well look at the truth.
You learn a lot, you know, you learn to value. You learn
from all the truth. There aremothers who do not want their children healthy
(22:33):
children in the street abandoned by theirmothers, while we fight hard for our
children so that they are well,so that they do not lack anything,
so that they do not get sickso that they are calm. One does
everything to the impossible. It makesa real one. I, more than
anything else, would give as amessage of awareness to all those mothers who
(22:57):
want their children, who want them, to value them, because there is
nothing stronger than having a child,not so much with congenital heart disease,
but with any condition is not easyAnd, as Luisa said, this God
chooses us. That' s apurpose. God chooses us for us to
(23:19):
help our children, not to forsakethem. Me, at least me my
daughter. I don' t seeher as with a girl with Einstein or
a girl with congenital lateopathy. Idon' t see her as my daughter.
This is my princess, the lightof my eyes, that accompanies me
everywhere. Nobody' s asking me. But my fight with my daughter has
(23:41):
been so big, I' mtaking her to high school. We climbed
three floors of stairs so that shefinished her high school stage. The same
can sub- basic. I wasriding her on my back, carrying her
up because they were studying on thetop floor of the campus that was a
(24:03):
third floor, which she couldn't climb all those stairs and I,
I, Jack Niella Sara Embroidered IslandWin took her and told Mommy, you
' re going to go to schoollike Mommy, I can' t go
up so many stairs. If wecan get on my man I' d
take you. And so she finishedher sixth grade and now, thank God.
It is in the first year andpassed for the second year and it
(24:27):
has been the same process as whenhe has this traveler who is fifty sixty
years old, he is left withoutcolumns. I don' t care,
I don' t care, butI am with joy and with my heart
full, with my heart great andsatisfied that I helped my daughter, that
I helped my daughter finish and theyfinished one stage, one more goal.
(24:48):
That' s why I always saythose mothers who have their children who abandon
them, they abandon them, theydon' t pay attention to them,
they want them, they want them, because it' s not easy to
have a child with a disability orboth motor condition and congenital heart disease.
It' s not easy. Theseare proofs that God puts us on our
(25:11):
way. I have always said Goddoes not put burdens that one cannot bear,
and I have always been and willbe for my daughter until God so
decides. Amen already has what Juliet' s prognosis is right now and for
the next few years. You alreadyknow you can' t do a plum
(25:32):
surgery so what' s going tohappen, because she' s only medicated.
Did they send you their meds forthe pension? Did they send you
their meds for high blood pressure?Pulmonating their asphyrins, their anticonvulsants, because
they already take ticonvulsants. She's also only medicated, and, as
Dr Castillo told me, there's another castle in the cardiology infant Only
(25:56):
God knows the moment, the timeyour daughter is in, you can die
before and she' ll follow thatone doesn' t know. Only God
knows. And he' s grateful. No matter what happens or whatever happens.
I am grateful to God for givingme the girl or giving me the
most wonderful girl of this boy.It is wonderful and she has given you
(26:22):
the most wonderful child in the world. And Julian has definitely given the most
wonderful mother in the world, becauseyour effort would have already had her reward.
That' s right, what's the advice you' d give
to your country' s doctors?According to your experience lived the truth that
they are not so with him thatthey know how to say things, because
(26:45):
they can be doctors, but theyare not God and they are not so
hard, because this is a processand this is a stage that not everyone
takes it as I take it.There are mothers who are desperate, there
are mothers who are uff there aremothers who don' t know what to
do and a doctor comes to saythat their son is going to be taken
(27:07):
out of a coffin, that theirson is not going to live, that
he is their son, that isto say the medium negative things, indifferently
if he is going to die tomorrowthe day after or not going to die,
that is to say they are notthe ones to diagnose something so great.
Only that can provide in God thatthey are not so cruel, that
they know how to say things,that they have a little bit of humanity,
(27:33):
of humanity, because this is notan easy process. This is not
an easy process. We' realways going to see as who says,
as a hope and get to amedical center where they tell you take your
son, because your son is goingto die tomorrow. I mean, it
' s not easy, it's not easy, and it' s
not just happened to me, it' s happened to a lot of mommies
(27:56):
here in Venezuela, so they geta little concintiated and that they know how
to say things, not that theylie to us, because neither with lies
or trying to lie to us.We' re either gonna feel good or
we' re gonna feel bad orworse. But let them not be so
cruel, because they are not Godto dispose of the lives of our children.
(28:18):
A little empathy is all we ask. I' m Marta, sorry
you know people, it' sthe conversation. I think I always tell
you on every show we have.Maybe it happened to me, Yaniela,
my mom was told that I wasn' t going to survive even six months.
And what I have is a palliativejust like juliet and I' m
(28:42):
still here so God is the lastone, yes, that' s right,
Mr ablemy Yo. That' swhy I told this doctor the castle,
give me the discharge, my daughter, that my daughter is leaving here,
it' s him and I againstthe world and no one is going
to tell us here that my daughteris going to come out in a coffin
that can' t be operated.I didn' t get it, but
(29:03):
I took it and that it's just God and that I have the
will on it exactly like you saidright now. You have to say things
the way I say it. It' s not that either because I want
to know how things are and Iwant everything to be as transparent as possible
for me to know how I'm going to work it, but it
(29:26):
' s not like you' regoing to tell me, as if I
' m a rock that I don' t feel that way. Well,
now, Niela, we are verygrateful that you have been with us today
on the program, that you havebrought us your experiences, that you have
strengthened that wonderful faith in the Lordbecause hearing that hope with that faith gives
(29:49):
energy to those who listen to you, both us and these mothers and these
people who are going to be listeningto you in the near future. We
know that that' s going tobe like an injection of energy that if
I' m feeling down and Ithink I' m not going to be
able to with this situation that I' m living in, there' s
(30:11):
a person who' s having ahard time and is hoping well put.
So, thanks for coming on theshow and Daniela, thanks to you.
Venezuela is experiencing a very serious healthcrisis. Four thousand two hundred children are
born with congenital caliopathy every year andless than twenty percent receive the necessary treatments.
Many high- risk surgeries are notexecuted and many ninjas, unfortunately,
die because parents do not have howto pay for surgeries in private hospitals.
(30:36):
They need our help. Congenital caliopathyis a condition that affects children around the
world and thus concludes this episode ofheart warriors. Thank you for listening to
us today You enjoyed this episode.Please leave a review of our podcasts on
our website side double or double doublepoint Hearst United Club, dot Ork and
(30:56):
remember friends, never give up.Thank you again for joining us this week.
We hope you have been inspired andempowered to become an advocate of the
heart- cemented congenital heart defect community, with your hosts Belene Blanton, Geneferkinguina
(31:18):
and Marta Montero. It is producedmonthly and can be heard wherever you have
access to Pardcast. The new episodesare broadcast on the second Saturday of the month
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