June 30, 2023 • 63 mins
En el programa de hoy, entrevistamos a una mamá que durante su embarazo le diagnosticaron una cardiopatía congénita a la bebe que con tanto esfuerzo estaba esperando. Nuestra invitada es Luisa Aciar, quien vive en San Juan, Argentina.
La bebe que Luisa llevaba en su vientre fue diagnosticada con una cardiopatía congénita. Tuvo que viajar a la capital para poder realizar todos los estudios y para dará a luz en Buenos Aires. En este podcast nos contará su largo camino y todos los obstáculos y los grandes desafíos. Maria Victoria ha sido un milagro pero todavía necesita otra cirugía.
Es una historia muy conmovedora.
Puedes comunicarte con Luisa
IG: @luisaaciar
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
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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.
La bebe que Luisa llevaba en su vientre fue diagnosticada con una cardiopatía congénita. Tuvo que viajar a la capital para poder realizar todos los estudios y para dará a luz en Buenos Aires. En este podcast nos contará su largo camino y todos los obstáculos y los grandes desafíos. Maria Victoria ha sido un milagro pero todavía necesita otra cirugía.
Es una historia muy conmovedora.
Puedes comunicarte con Luisa
IG: @luisaaciar
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.
Mark as Played
Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
(00:04):
Welcome to your program Heart Warriors fightingagainst common heart disease. I am Marta
Raquel Montero, one of the hostsof this program, and I am also
the mother of a warrior of heart. He is accompanied in this interview by
Belén Blanco, another warrior with aheart. In today' s program we
(00:25):
will interview a mother who during herpregnancy was diagnosed with a congenital heart defect
to the baby that she was soeagerly waiting for. Our guest is Luisa
Asian, who lives in San JuanArgentinina. We will begin in the first
segment by learning more about the heartdefects of Maria Victoria Sunena and Miracle.
(00:47):
We will know how her cardiopathy wasdiagnosed during pregnancy and everything that had to
happen for Maria Victoria to be born. We will also learn about your surgeries
and treatments in In the second section, we will learn about how you manage
heart disease and what your challenges are, which you face daily with Maria Victoria,
(01:10):
your school life and what advice isoffered to parents who are going through
this situation. In the third segment, Luisa will tell us about the future
for Maria Victoria. In the thirdsegment, Luisa will tell us about the
future for María Victoria and will facemore surgeries, her experience as a mother
(01:30):
before the challenge, as well asoffering advice to mothers who are diagnosed in
pregnancy and how in their country tonatar, Argentina, the medicine is prepared
for these diagnoses? Five- year- old Maria Victoria Sanchez asir. He
was born on the seventh of Juneof the two thousand and seventeen. He
was born with atrioventricular block, suchas complete gene, non- compact biocardium,
(01:55):
arbitral insufficiency, and has undergone surgeryto place the heart- capacitated malaise.
In the future or another surgery willbe accepted. Welcome to warriors of
the heart. Luisa, Cimas,bregancias mana and Belén for this space in
order to be able to share withthem with much love the story of my
(02:20):
little warrior Maria victory and let's enormously great your time that this with
us here sharing this important information.Luisa, in your biography we found out
that your daughter has several optical daysand that you found out during a pregnancy.
You can explain to us how ithappened, what happened during your pregnancy
that you saw this concern. Well, the truth is that it wasn'
(02:42):
t a concern or a motivation thatcame to discover Maria Victoria' s diagnosis,
but they just told us in aroutine checkup, and not so much
routine, because in reality it wasultrasound four of us, we that made
her face known, see her faceand went to the diagnostic imaging doctor and
(03:07):
we echoed four d and at thatmoment this doctor told us something happens to
Maria Victoria, something happens to thisbaby. He won' t be able
to be born in San Juan.This baby has to be born in a
(03:29):
center of high complexity, because thereis something in his heart. That'
s what he told us. Well, she referred us to a child cardiologist
and that' s what we didimmediately We consulted with the most experienced child
cardiologist here in San Juan and sheconfirmed the diagnosis through an echocardiogram. Dobr
(03:54):
told us that she had a venticularauricular block with a complete gene that of
the three blockages that exist, shehad the worst, the most serious.
It turns out that the conductive channelbetween atria and ventricles in Maria Victoria had
(04:16):
been blocked and they didn' tknow why. Just that something happened during
the pregnancy and that channel that droveelectricity was blocked and it was irreversible.
There was no way to deal withthat blockade, so they told us that
(04:40):
we had to go to Buenos Aires, to a center of high complexity where
they could control and follow the specializedmedical pregnancy and that this good baby was
born had to, of course,be born in such that he was prepared
(05:01):
to be able to cope with thatdiagnosis. This was how we had the
prenatal diagnosis and we could, ofcourse, prepare ourselves, since immediately after
the two weeks of the diagnosis,we traveled to Buenos Aires and once we
(05:24):
arrived we were asked to stay.They wouldn' t let us go back.
We were told that we had tostay for the duration of the pregnancy,
because they really had no expectation ofthe good evolution of Mary Victoria.
That' s how we heard Actabecause I would like to put some nice
(05:49):
words to this and he said again, but positive to know during brao proco
diniste that it cannot be repaired,but in reality, very positive to voluterate
s boot and you explained us alittle bit of the atrial block. You
can possibly explain the others, becausethey are the Tomanio victory. Well,
(06:12):
like you said, it' snot really news you expect, it'
s not something you' re preparedto deal with. No, but I
think prenatal diagnosis is fundamental. Itis what opens us up, the possibility,
(06:34):
what gives us a chance, whatcan lead us to that baby with
a different heart, can, cangive and have victories over what is expected,
which would be that the baby isnot born or that is born and
(06:55):
dies. This allowed us to prepareourselves, since it was already from the
emotional, from the spiritual. And, well, it was almost four months
too hard to have that uncertainty,that we didn' t know what was
going to happen. But finally hedid make Victoria be born and good that
(07:23):
she had that chance to be bornalive and fight. And well the truth
that I think that' s likethe tool that one can get to have
or the resource that one can getto have inside this whole situation and inside
this whole storm and this black cloudbecause of this so painful news that one
(07:49):
gets with mom and like dad.You hadn' t spoken. Now a
little bit of auripopricular blockade, sincepreviously anticipating us, he responded to take
in history yes maria. Victoria wasdiagnosed in the pregnancy of the block,
but then, when she was inintensive care for almost a month and the
(08:15):
usual priority was for her to survive, for her to evolve and reach stability
to be able to operate, sothat she could do pacemaker surgery. So,
well, the first one as thefirst goal, it was that,
not because she was born practically lifeless, with many caves to overcome, but
(08:43):
as a priority it was to stabilizeher, to get them out of all
that fattening her. I know shehad a little more weight so she could
face that pacemaker surgery. Her surgeryis done with pacemaker surgery. Well,
(09:05):
it was also a super, superhard stage. But we got ahead.
It begins to evolve favorably and atthe same time they give us this second
diagnosis. We, believing that everythinghad already happened. The battles had already
been defeated and everything was quiet andit was now a matter of just enjoying
(09:33):
it, taking care of it.They tell us there' s a second
diagnosis. And that' s whenhe destroyed us again, he devastated us
because they told us he had anon- compact heart disease. It usually
evolves for bad, let' ssay together and associated with the blockade was
(09:56):
like a horrible combo. So,well, it was like very hard,
very difficult to retake that new challenge, of that new challenge over time,
this niocardium or non- compact isthe wall of your left ventricle that was
not reached. So that wall islike there' s hollow holes left in
(10:24):
that wall, it' s likethey' re missing bricks, a thing
like that to graph it somehow,so there' s holes in that wall
of your left ventricle, and fromthose holes there' s some trabeculas that
(10:46):
are like carnose. So, andit' s bigger, it' s
yes, it' s a hypertrophicventricle. Okay. The question was that,
despite not all your diagnostic gestures,Maria Victoria began to evolve very favorably,
very but very favourably. And shealso had a mitral valve failure,
(11:13):
but it was mild in her earlyyears of life. It was mild,
so the truth had an absolutely favorable, miraculous blessed evolution. Those are the
other diagnoses he had. Maria Victorbreathes when you have news to move inside
(11:37):
your country. You had to moveGod from loving victory in any hospice to
the part you had to move tobe able to give birth, to be
affronted, to have some other knowledge. Yes, yes, yes, of
course there were many situations and challengesthat we had to overcome. We had
(12:01):
to move from our province, whichis a very small province, one to
the capital of the country and allthat meant, not because we were people,
to say the least, and wefeared the big city was terror that
I had Buenos Aires. That wasreally a big, big fear that I
(12:26):
had to face and that I hadto overcome. Other challenges were to expose
our house, our jobs, andto install ourselves in Buenos Aires for as
long as it wasn' t,we didn' t know how long we
(12:48):
were going to have to stay there, because we didn' t know what
was going to happen with pregnancy.We were told that Maria Victoria did not
have almost ninety percent chance of deathin the womb then they were truly an
absolute uncertainty. My youngest daughter,Valentina, was three years old at the
time. She had to leave hercolencio, get on a plane, stop
(13:11):
seeing her family, her pets,her house. All of a sudden,
get to a city and be lockedup in a little apartment with the mom
who was in the hospital all dayand she and her dad both alone in
the apartment. Well, they usedto play nice,' cause there really
(13:37):
wasn' t anything else to do. And well there were many challenges,
much anguish, anxiety, fear,my husband very distressed, not only for
Mary Victoria, but also for ourfuture, because he had already left his
job, also this question of howwe will face the time we have to
(14:00):
be here good. There were reallyso many, so many people, the
challenges, the worries and tensions thatone experienced going through a similar situation in
him, all that way and throughoutthat process. Of course there were people
(14:24):
who accompanied us, supported us,supported us, supported us, there were
many angels who were always there togive us that support and that support and
thank God, who never abandoned us, because, besides all this, it
(14:45):
was not only that of Mary Victoria, but all that implied many more things
in the middle my in- laws, my husband' s father- in
- law, an unexpected death,a young person in all sixty- three
years. They call us one daymy sister crying desperate that they had found
(15:11):
my dead father- in- lawin their house. It' s my
turn to give the news to myhusband and well, at that moment he
had to travel to San Juan desperatelycome to fire his dad, bury him
and return, because, obviously wewere with the whole Maria Victoria issue.
(15:35):
We had already been discharged, butit was monitored 100% for any fallite.
We immediately had to do the pacemakersurgery. She had forty heartbeats during
pregnancy, a baby needs at leastone hundred and fifty to one hundred and
(15:56):
eighty beats to survive pregnancy, becauseit is not easy to survive a pregnancy.
I' d say it' sa great miracle. Then that heart
that has to pump blood for everyone, so that they reach all the organs
(16:18):
and those organs can develop. Themillet had only forty Latinos, nothing but
forty. Then we, when theygave him up with forty beats and told
us well you can go home,it was one thing we couldn' t
believe and we said it there forGod' s sake what we' re
(16:38):
going to do. And well itwas like my God something that really of
words has that limitation of not beingable to express all that experience and that
experience. So that happened that myhusband and son died. I' m
(16:59):
sorry my father- in- law' s father- in- law,
my husband' s father- in- law and my husband' s father
- in- law, for Iguess coming back super fast, because we
were with weed victory there, withforty little beats in his heart, not
knowing at what point he was goingto need the surgery. And well she
returns and at twenty- tencas theywarn us that they fail and mother-
(17:23):
in- law my husband' smother, she had a rather advanced alrstamer
and, evidently, the departure ofher vine as it affected her, she
found out in everything because she wasabsolutely pratid. But we assumed that she
(17:44):
absolutely felt the absence of my father- in- law, because she cared
for her all day twenty- seven, so twenty days after my father-
in- law' s death mymother- in- law died and two
of my mother- in- lawwas missing for Maria Victoria' s surgery.
So my husband didn' t havea chance to come to San Juan
(18:07):
and fire his mom. That wasvery, very painful, but we had
to turn it around and give ita meaning that empowered us and helped us
get through that situation. Not becauseit wasn' t like it got very
hard to resist. So we saidgood it excited me. We said surely
(18:32):
they went to make the angels ofMary Victoria and help them to go through
everything that was coming. Because thetruth is that surgery was a very,
very large, very strong surgery andI always think that the strength, the
(18:52):
strength of the parents play a veryimportant role. Then we had to pro
- programme them to get her outbefore Maria Victorias, no matter what was
going on, and so we wereable to overcome that great adversity as well
(19:18):
And beyond all the pain experienced,we could not deny that, behind all
that adversity, a great blessing wouldcome to us. And that blessing was
that Maria Victoria managed to overcome everything, managed to overcome death, managed to
(19:38):
overcome the forecasts, achieved the impossible. So that happened to us, too.
Luisa asked him. It' sa pretty hard process, because not
only did they have to face unexpectednews of a being who, as I
said well, right now with alot of effort and after a pregnancy you
(20:03):
lose that comes being what we commonlyknow as a be of something iris,
but you also have to face yoursituations away from home, you' re
still out of your province. They' re back. No, no,
we' re back. We weresix months in Buenos Aires, when Maria
Victoria was born in the three monthsof her life. There we were able
(20:26):
to return and since then we beganto travel every three months and as she
evolved in a favorable way, wewere able to space those controls more and
do the six months. Currently wetravel twice a year to Buenos Aires to
their controls and here in San Juanwe control it every three months, that
(20:52):
is, every three months it ischecked once here after three months in Buenos
Aires, at three months they haveSan Pan And so to close the first
segment, almost always, not tosay always with us mothers we choose the
names of our children since we arepregnant. We know that if you are
going to be a child or childvictory it is a man who was already
(21:18):
chosen or came after all the situationyou had to live. We haven'
t chosen it since before, youmust before we know for from your Spanish
cardian, that kind of name,just like your first daughter' s name,
Valentina, are names that mothers mostlychoose when their children pass, when
(21:38):
their babies go through processes. Theyknow that it has not been easy and
to place those names because they demonstratedin some way or the exact victory or
courage. And so listening to themI propose to listen to the story,
because you may think that you decidedthe name after all, but I already
(22:02):
had it seems that we already hadan idea that it was going to be
a victory in what you were goingto live exactly like that. So it
was, it was not in vainhis name, it was not, evidently,
we were born, it was notrandom, something surely there was some
(22:23):
divine flash. He came to meat some point that he told me you
had to put victory and my husbandchose Mary and good the Catholic religion.
We recognize Mary as the mother ofGod, of Jesus, and we said
(22:45):
if you turn around, we tryto find that meaning too not to see
the name. If you turn itaround, you say Maria' s victory.
This was the victory yes Mary exact, yes, yes, the truth
is. This will continue to dothis content. It is not intended to
(23:11):
replace diagnostic advice or professional medical treatment. The opinions expressed in this podcast are
not those of Horge unighted Lo,but those of the hosts and guests and
they intend to generate a debate onissues related to congenital heart disease. Welcome.
(23:34):
Again, before the break we learnedabout the situations experienced by Maria Victoria
and her mother. Now, Luisa, you can explain how you deal with
the different conditions that Maria Victoria Guauhas. It is a difficult question,
(23:55):
but today try to do everything possibleto answer to see about the outside world,
aces with its conditions related to itsconditions. The truth is that it
is not so much the struggle thatI live, it is not so much
(24:22):
for the outside, but rather forthe interior, because she, despite all
the diagnoses that she has three,is a very healthy girl, very healthy
since she was a little baby,that is, after she went through all
the intensive care, that she wentthrough the surgery, she began to evolve
(24:48):
and since then she has been agirl that did not show any different kind
of condition, It was not likean absolutely normal baby, with a normal
life, with an absolutely normal growthand development, according to hyper monitored and
(25:14):
hypercontrolled, because she had the samediagnoses, not from the false, but
nothing. She was absolutely normal,even very much a relief with her,
unlike my other daughter, who,being a healthy child without any heart disease,
was living from little girl all thetime and weary victory. It turns
(25:37):
out nothing, that is, I' m never a girl who didn'
t even have a little fever mademe during Baby. Nothing I mean is
nothing, nothing a thing that wereally couldn' t believe and to this
day that we can' t believeit, or it' s like saying
wow is a miracle every time becauseshe presents absolutely no symptoms, no signs,
(26:07):
no signs or any evidence that shehad that heart. There' s
different. So really that she givesus as she gives us as, on
the one hand, that peace andthat assurance of seeing her grow healthy,
strong and leading a completely normal life, has no limitation whatsoever. You just
(26:38):
have to take care of her fromthe blows by the embarrasses of the blows
on her bancita. He can't, of course, do a competitive
sport, so we' re alwayslooking for some discipline, like dance,
(27:00):
but so far we haven' tfound out what' s right, because
up to here I don' tlike anything and what he likes or can
' t do, for example,football or artistic gymnastics. So, so,
well, it' s really ablessing and a miracle beyond everything she
(27:21):
has. As I was saying,it is completely asymptomatic, but yes,
of course, it is absolutely controlledand monitored and that in school, for
example, they know their condition,they know the care they have to have
if at any time they put theirlips purple or if they see her breathing
(27:47):
with difficulty, etcetera, etcetera,that is, it is like all the
alerts are on, but we havenever had any situation that has taken us
as assistance wagon. I' dsay that more than what I deal with,
it' s with everything internal,but with my internal fears, it
(28:11):
' s what makes my life difficult. But if I look at her,
it' s like that' swhat I use to try and convince me
that everything' s going to goon as it is until today. And
(28:33):
that' s the way I foundit. It is the tool that I
use daily to give me strength,security, to overcome all fears and fears,
because, of course, that one, when you go to the doctors,
they tell you, they tell youthings, then you are always in
(28:56):
that fear, with that anguish,by lis by uncertainty, so it causes
this to not have the certainty ofwhat is going to happen with that heart,
of what is going to happen?But you have basically with her we
don' t have any kind ofchallenge we have to deal with, but
(29:26):
simply basic care for her pacemaker totake care of her perhaps a very hot
day, with very high temperatures,the tas not to be exposed to the
sun or, to drink lots ofwater if, of course, be very
strict and disciplined with her measure.So what we could say that the great
challenges that you have to face dailyis with yourself absolve each day I realize
(29:52):
that children born with heart disease,conjuymic are that birth warriors. It is
impressive how they adjust to everything thatis happening to them and try to have
a life, even if they feelbad, to have a normal life.
(30:15):
Well, as you know, I' m a cardiopath and I remember that
all I thought was my God I' m gonna be okay. It'
s all right,' cause mymom tells me everyone' s gonna be
all right. And I just wantyou to know as a person with heart
(30:37):
disease that you see my mother isthat for us the mother is the most
important thing and that all you're doing will see the results of how
that child is going to be withyou. For us, the pacas cardia,
the mother is good, the VirginMary is the maximum, so everything
(31:00):
you are doing and don' tbe afraid. Don' t be afraid
because she knows she trusts you andshe knows that with your help she'
ll be able to overcome everything nowI wanted to ask you what the day
(31:22):
is like for Mara Victoria. Iunderstand that you told us that she knows
her condition, but more or lesshow she takes it, that is,
how she behaves to her and howher day is. Well, oh,
I' m already absolutely excited.I' ll see what' s true.
(31:45):
Mothers are the best in the world. The child' s mother and
I have told Marta many times theyare also the best in the world.
There are no other mothers like motherswith children with carrepathy. For me,
thank you very much, thank youvery much. Well, Maria Victoria,
(32:07):
she knows she' s got apacemaker, but she doesn' t know
anything about her heart. And whynot, because she was never, ever
introduced to the restlessness. Then wenever had to tell her anything because she
(32:28):
never asked us absolutely anything. It' s not that we' re hiding
it, but we just want itwhen the time is right. I think
she' s going to be arousedby that interest, that curiosity and she
' s going to ask us,but for the moment she hasn' t
(32:51):
asked us anything. She simply hasas naturalized to go to the doctors every
three months who do her ep cardiogram, to put her holiter on, to
control her pacemaker. It' slike she was born and they were her
first experiences. So I feel likeshe naturalized him and she thinks it'
(33:15):
s the normal thing, which isthe natural thing. So I think that
' s where it comes from thatyou haven' t been presented with the
restlessness yet. And on the subjectof pacemaker, he knows that he has
a pacemaker in his belly, acomputer that has to take care of it
(33:37):
and that that computer is simply connectedto his heart and sends him more strength.
He doesn' t know anything elseand we never read. We'
ve treated her like a different ordifferent baby. We' ve never overprotected
(34:00):
her more than her other sister.Never have we ever said alas, poor
thing or anything. Nothing. Weretamas as it is, had absolutely nothing.
We have never told them that wehave not told them. We don
' t go through life telling peoplewhat they already have to look at differently
(34:22):
or feel sorry for, not atall. That is, Maria Victor is
a normal child and if at somepoint the situation arises that is that and
it must be mentioned, it ismentioned, but generally no one knows what
(34:43):
happens to her, because they seeher as a completely normal girl and the
treatment of us is absolutely enormous andI believe that that has been very,
very decisive in her evolution, inher growth, also at the emotional level,
(35:07):
because she is a girl who,as she is very well planted on
earth, is very rooted, hasa super powerful character and she is and
I am always to her and toher little sister, of course, to
both of them I always talk abouthealth. We never talk about illness,
(35:27):
but we always talk about health,life, love, abundance and all the
time, like we' re vibratingthere and in that frequency beyond me inside,
of course, I have my momentswhere I die of anguish, fear
and usually every time we have togo through control. I' m practically
(35:52):
like a guy who' s gotto face me. I don' t
know about an odorous battle, butin general, it visualizes and identifies itself.
Identity belongs to a healthy child.It' s not a cardiopathic girl
' s, it' s ahealthy girl' s. That is the
(36:12):
identity of Mary Victoria, a healthy, strong and powerful child, and she
practices her claims every day. Iam healthy, I am love, I
am light, I am strong andI am powerful. But the most important
thing, that my mom also didwith me, is that you teach her
to know her body, that sheknows what her limitations are. That'
(36:35):
s the most important thing. Ofcourse, emotional and psychological health is very
important, and that she has astate of being healthy and calling a normal
girl in a splendid. But aswe grow. We have to work on
that self- care that, ofcourse, independently there' s going to
(36:57):
be a time when something' sgoing to be clicked Yes, it'
s very small. I can tellyou to explain in detail or wells those
words so big that even I hada job saying it. But exactly.
For example, from my perspective sheis fourteen years old. I had a
(37:20):
moment when I was loaned aspects heartsthat have mostly paldiologists' offices that can
be seen and I was torn apart. And for I did not necessarily explain
to him because the heart or comeswith the defect that he has. But
yes, you could explain the partof the reason, but a little different,
because they leave, they go learningwhat' s going on with their
(37:45):
body and they go explaining to othersbecause, for example, the baby has
a bad ability and in you tellher that you have to take care of
it, and you have to takecare of the bridges. And that'
s where learning and awareness begin.And this little friend is with me,
this little friend is with me,and not only do I say to him
(38:07):
that you have to be careful withme, but I start to create in
them that support towards my person thatwhatever happens looks like we have to be
careful with several victories and not thepenalty, not the fact that woe poor
thing, because it has this,no, it' s not that we
have to be careful as we wouldhave it with anyone else, because I
(38:29):
don' t have a capable evil. Super did something, but if it
hits me, it' s gonnasneak me in. It' s like
creating this awareness that if I'm healthy and if I' m okay,
but that doesn' t mean Idon' t have to take absolutely
full care of myself. Yeah.Yes, yes, yes, of course,
with Maria Victoria we put a lotof emphasis on how to take care
(38:52):
of yourself to maintain good health.So we' re always teaching ness and
putting a lot, putting a lotof emphasis on habits, on healthy areas.
So that' s what I'm marking for now, because,
like you said, she' svery little. She' s five years
(39:14):
old, and yes, at school, her little buddies know she' s
got a tummy cover. Then,of course, they take care of her
at recess. Her dreams are alwayslooking out for her. Gymnastics classes are
also very careful with the theme ofhydrating during the four hours that is there
(39:38):
at school. And yes, yes, of course, that we work in
habits of care and in healthy habitsand little by little as she goes,
that in her this curiosity, thisinterest and this restlessness is generated. It
(39:59):
' s how we' re goingto provide you with information and always,
of course, supported by a psychologistor someone who can prop us up and
tell us good, this, yes, this doesn' t. I think
you have to arm yourself as ateam to be able to also in your
(40:22):
own important and pro for all sto those books. Yes, they are.
We need to. That' swhy we' re here precisely because
we' re saying this program andthank God you get a lot of mothers
for putting yourself in situations, becausethis is also the adventure of sleeping with
a tapiopapiía. No one we've interviewed has ever seen the same thing.
(40:45):
Everyone has experienced a perspective, soit is very important support as it
sounds, as it is right now, as emotional as it is psychological,
not only for them, for usthere are days that it seems that we
are going to eat on board andthere are days that in Gosdo ate us
(41:07):
exactly absolutely and for what we sufferfrom heart disease, we have days that
we also want to eat a world. But there are other days that we
want to sleep all day exactly becausewe are tired, because the body does
not give us, but that doesnot mean that something is happening in the
heart. It' s just thatthere can be nature. We' re
(41:32):
different people, but it only makesus less than anyone, that' s
the most important thing, and that' s what we' re also trying
to get people to learn that havinga heart disease, you have a different
heart, but you can live withthe exact different heart, yes, absolutely
(41:53):
clear that you can. Of courseyou can live a beautiful life despite having
a heart been different warriors of theheart. It is a Horth Unite presentation
by Glove and is part of Horgparkst network Holt se Deletrea hug and are
(42:15):
the acronyms of Horthe Night by Globhorgei Nigh The Glob is a non-
profit organization dedicated to providing resources tothe congenital heart disease community to raise,
empower and enrich the lives of membersof our community. If you want to
(42:36):
access free resources from the congenital heartdefects community, visit our Genetic Heartffex com
website for information about hospitals treating children, summer camps for survivors, and much
more before the break. We weretalking about the life of Mary Victoria and
(43:06):
all the challenges she has been through, not just her, but her mother
too. They' re Ramos hisdad, because this is a set.
Here, together in harmony, whathappens with them in one way or another,
We also feel it or we passit or we look for the way,
as we sometimes say that I wantto be the one going through the
(43:28):
situation and not my baby, butit is up to us to do that
support and it is what has happened. I say Luisa, that has been
that support for Maria Victoria in thisprocess so important that it is living with
a cabiopathy. And maximum Maria Victoria, who not only lives with caliopathy,
but also has to live with apacemaker, what is the next step to
(43:52):
continue with Maria Victoria has a surgerythat was where they put the very capable
true and now that in itself isgood. Now Maria Victoria has a mitral
valve reconstruction surgery ahead of her.They never told us that Maria Victoria was
(44:16):
going to need surgery again. Wewere told in principle that in Via Victoria
I was only going to need togo into an operating room to make the
battery change and when the cables weredamaged there, they would need major surgery,
(44:38):
chest surgery, to be able tochange the electrodes of the leather pacemaker.
They told us that these cables lastfor two to twenty years, that
is, we never made the ideathat Maria Victoria would go to surgery soon,
(45:01):
but it happened that after two yearsthat we could not go to the
controls because of the pandemic, wereturned in January of two thousand twenty-
two and there they told us thatthe inadequacy of her mitral album had worsened
and that it was possible that shewould need surgery, since she had to
(45:24):
take care of a lot of leftventricle. We were told, possibly we
said well, because yes, horriblyit is not necessary. Yeah, and
it could possibly be maybe five years, ten years, and you' re
(45:45):
talking to people and they' resaying, oh, no, but my
dad' s eighty and he's mitral valona sufficiency. Severe and talk
to someone else and don' t. Yeah. Well, then we really
got the idea and we made itthink that I wasn' t going to
need the surgery and if I neededit, it wasn' t going to
(46:07):
be soon. Then nothing like wesaid. Well, everything' s fine.
All the same. When we returnedin July, in July two thousand
twenty- two did not tell usanything, that is, everything remains the
(46:28):
same and already in January two thousandtwenty- three we ran into a wall
we crashed into an entire building,because they told us that Maria Victoria needed,
she was going to need surgery ina year. And so, well,
there it was like again we diedand again we had to do that
(46:50):
little ant job, to rebuild ourlittle soul from the little part and try
to stick each of its parts withno longer knew with what strength, but
well we did it and today weare in that sphere. In July we
(47:16):
return to control and there, withthat expectation of what it is will surely
give us already the dates of hissurgery for the beginning of two thousand twenty
- four. So we' repreparing emotionally, psychologically, psychically, physically,
(47:37):
and in every possible way for whenthat moment comes, always, always
without letting go as that hope thatthey tell us they won' t yet
need it. We can wait alittle longer or the valve' s insufficiency.
(47:59):
Now she didn' t return tomodegrade. One always has as hope
that God will charge a miracle,that only he can act and do those
things that for science have no explanationand that, from the scientific and from
(48:22):
the rational, one says there isimpossible. No, but well, we
never let go like that hope ofsaying good why not. That is,
miracles happen and if it doesn't happen, because we are absolutely convinced
(48:44):
that everything will go well, thatif it' s what she needs and
it' s for her greater good, then we will be there at the
bottom of the barrel to face surgeryand for everything that has to come in
(49:05):
search of her recovery and that thatlittle heart better, is healthier, stronger.
So now we' re on thatother mission. It' s like
it' s never over. Onealways has new missions and new adventures in
which to dive when he has achild with a different heart. But,
(49:30):
well, here we are always love, can everything, love, what I
thought everything and clinging to love andlife Luisa. What is the prognosis of
Maria Victoria right now and for thenext few years would be what the prognosis
is. I don' t knowif I should have a prognosis. They
(49:53):
never told me I never asked,I never looked for what we say,
and like I say, they didn' t give me a prognosis. It
' s like in every control andit' s good we' re going
step by step, not, infact, when you explain to us from
(50:15):
the next surgery, in part ifthat' s not a Commission Sycle that
' s going to need surgery soon. But, as we were saying right
now, mothers' visions are different, for there are some that they can
say in some time. For example, worth the Redundancy you gave an example
(50:37):
of my son himself. He hastwo surgeries, the glane, the transposition
of large vessels, the lens thathe was given at the age of eight
months by the fonda that they didto him at the age of three and
a half years. He now hasa likeo of valves that he is working
with more than one medicine and sometimesthat he has been asked in these years,
(50:59):
from three and a half years tonow, fourteen years ago, that
if he is going to do anotherciology. Well, the doctor tells me
that maybe when I' m anadult, because he' s giving me
a promosis well that maybe that's the key word we prefer more to
(51:20):
himself. You may have to havesurgery when you' re grown up.
It' s just that when themedication they see, we already got the
medication It' s been a while. It should also be remembered that in
the flesh, the studies of congenitalcariopathy are progressing more and more accurately.
So, for example, what Ihad, the syndrome that I have,
(51:45):
there are people who couldn' tstand even forty years and look at the
new vidicaments, with the new thingsthat have come out I have been able
to maintain myself. Then that,little by little it will advance and there
will come a time that you willnever be able to heal, because the
one born with a congenital empathia letterfor life, all life. You'
(52:07):
re going to have it and you' re going to make a heart disease,
but at least you' re goingto have a quiet life, even
though I tell you with everything Ihave, I' m a quiet and
normal piece, because I' mhappy and for me life is one,
(52:28):
but it' s that you livein a war. Have your haartime parbiopathy,
but you give it to her exactly, too. Of course not the
Kippelia, the fight is a church, no and look at yourself, maybe
you too. As you haven't given yourself a few forecasts, because
(52:50):
maybe remember that you also explained thatthe block that you already had the strongest
of all the blocks that can bediagnosed and maybe we are in every day
seeing that brings new everything by thenwe know what is going exactly. To
see what is the blockade would beabsolutely treated with the Pacemaker. I mean,
(53:17):
the block isn' t irreversible andit doesn' t have treatment,
but to look at that one sortof thing, one way with the pass
mark is because the Marcapasas sends himall that electricity he was missing. Now.
(53:38):
The uncertain is his non- compactmyocardium. Yes, it has evolved
so far. She' s superfavorable, I mean, that non-
compact myocardium, it hasn' tgotten worse and she' s got a
(53:58):
good contractility, that is, thefunction is preserved. So it kind of
goes on like that, wonderful.And the subject of mitral insufficiency, which
clearly at first was mild, why, because she was exact, that was
what I have in saying has as but here the situation becomes more difficult,
(54:19):
as we are growing accurate, accurate, exactly as she was born with
that congenital malformation of the mitrium valve. At first wonderful, she was small
and the insufficiency was mild. Butas he has grown, then that valvulite
(54:40):
no longer reaches him, because thatvalvulite, he did not grow. So
that' s what needs to berebuilt now. But it' s really
like I don' t know ifI' m gonna be able to explain
it with terms that understand why I' m not a doctor. But it
' s like your heart is likeyour heart has adapted to that form,
(55:06):
let' s say that form,and it kind of works perfect. Having
that, he works well in whatsends the blood that every organ needs.
And it' s like everything isworking in harmony, even with all those
(55:29):
non- conditions, that is,with those conditions, even with those conditions.
So, well, maybe all herlife she goes on like this with
that myocardium, working the same wayand solving this mitral valve failure. We
(55:51):
' re still good, okay.We' re going to imprecise how the
body gets used to you to whatyou have, for example, every time
I go to the doctor and thenurse takes me what' s called oxygen.
Well, you can' t beokay. You can walk, your
(56:14):
father, for I my oxygen issixty- five to seventy- five,
that is, I have lived everythingin my life with low heaven And for
other people of course, if youare seventy- five, you are dying,
but I am not or to meas much as I tell you your
(56:34):
story I laugh. For me therewere eighty. It' s a holiday,
I mean, I' m fine, I' m fine, so
what' s like everything' sbeen so studied. Everyone sees it as
not happening. And it can,because the human body is perfect and the
body knows how to adapt to allthose things. They don' t have
(57:00):
the word. How wonderful you don' t have in the last word that
you have to follow suff of recommendations, you have to be everything they say,
of course, all this. Butto my mom, since I was
three months old, that steam andwhen I' m six, when you
' re seven months old, whenyou' re 50 and you' re
(57:25):
50 and I' m still righthere, I can' t imagine who
decides. You know who absolutely,absolutely does. I think it' s
kind of good. Doctors have tosay what they' ve studied and what
' s in the books, butnot really what I was saying is the
(57:46):
one above. That' s right. They told us so many things about
Mary Victoria, so many things forGod' s sake. What would be
the advice you would give to boththe doctors and the parents of your country,
according to your experience. And experiencewe mean knowing during pregnancy and how
(58:07):
you had to handle this situation.You move from the place of dwelling and
start working, because the advice Iwould give so much to parents, to
doctors. I don' t knowif so much to the doctors, but
yes to the parents who get newslike that, they keep fighting for that
(58:32):
baby, that baby wants his parentsto believe in him. Yeah, because
out there fear wants to slow youdown, fear wants to catch you and
it wants to treat you. Butyou have to hold on to love,
you have to hold on to life, you always have to hold on to
(58:53):
life. First you have to fightand give everything. I mean. We
didn' t with my husband,we said well, okay. They tell
us that Maria Victoria has no,she has almost no hope, but we
are going to fight and we aregoing to give everything. And it will
be her and God and her.When I believe that every baby feels not
(59:20):
the strength of their parents, theirparents, strength, faith love, then
they cling to that. I mean, I believe that Mary Victoria was so
affected by life, by the loveshe received, despite all the fear and
all the uncertainty, that that washer tool to overcome until her own death.
(59:46):
So they fight, they fight,they fight, they don' t
give up, they don' tgive up, they hold on to this
one percent, that one percent,they don' t let go, they
visualize it, and they don't give up beyond all they can hear
(01:00:08):
from doctors, because, of coursedoctors have to say yes or yes,
it' s up to them tosay what' s in the books.
But, well, I believe inmiracles and I believe in that one,
two or ten percent that there ishope. So my message is that they
(01:00:34):
fight him, fight him, don' t give up, feign that little
ray of hope and then God decidesGod and, of course, also the
Baby that' s there in thebelly. I think it' s a
decision they' re making together acontract, they' re making a rope.
(01:00:58):
So that' s my message,that you never lose hope and that
it' s gonna be that one, or two or five percent that there
' s hope. Well, Luiisa, we thank you a lot again for
being with us, for having sharedyour prudence, that we could know that
(01:01:21):
somehow and another we are going wellwith you other parents who are going through
your situation, because we are facingthat news of the candiopapia. He sees
me. Thank you very much,thank you very much. I hope that
yes, I hope that my storycan, can help and can serve and
(01:01:45):
I can dig deep into those heartsso that they never lose faith, so
that they will be filled with hope, that they will grind in that love
and fight, fight for their childrenand help us overcome all difficulties, all
trials. And I think every adversityalways brings with it a great blessing.
(01:02:14):
So you have to stick to that. So I conclude this episode of wanting
heart. Thank you for listening tous today. If you' ve enjoyed
this episode, please leave a reviewof our podcast, on our Whitside Up
at www Parks Ligh the cloop Orkand Remember Friends never give in for winning
(01:02:34):
and two thanks again for joining usthis week. We hope that you have
been inspired and empowered to become adefender of the community of congenital heart defects,
heart eaters with your hosts Bethlehem,Blancton, Jenneferk Inguina and Marta Montero.
(01:02:58):
It is produced monthly and can beheard wherever you have access to podcast.
The new episodes are broadcast on thesecond Saturday of the month
Welcome to your program Heart Warriors fightingagainst common heart disease. I am Marta
Raquel Montero, one of the hostsof this program, and I am also
the mother of a warrior of heart. He is accompanied in this interview by
Belén Blanco, another warrior with aheart. In today' s program we
(00:25):
will interview a mother who during herpregnancy was diagnosed with a congenital heart defect
to the baby that she was soeagerly waiting for. Our guest is Luisa
Asian, who lives in San JuanArgentinina. We will begin in the first
segment by learning more about the heartdefects of Maria Victoria Sunena and Miracle.
(00:47):
We will know how her cardiopathy wasdiagnosed during pregnancy and everything that had to
happen for Maria Victoria to be born. We will also learn about your surgeries
and treatments in In the second section, we will learn about how you manage
heart disease and what your challenges are, which you face daily with Maria Victoria,
(01:10):
your school life and what advice isoffered to parents who are going through
this situation. In the third segment, Luisa will tell us about the future
for Maria Victoria. In the thirdsegment, Luisa will tell us about the
future for María Victoria and will facemore surgeries, her experience as a mother
(01:30):
before the challenge, as well asoffering advice to mothers who are diagnosed in
pregnancy and how in their country tonatar, Argentina, the medicine is prepared
for these diagnoses? Five- year- old Maria Victoria Sanchez asir. He
was born on the seventh of Juneof the two thousand and seventeen. He
was born with atrioventricular block, suchas complete gene, non- compact biocardium,
(01:55):
arbitral insufficiency, and has undergone surgeryto place the heart- capacitated malaise.
In the future or another surgery willbe accepted. Welcome to warriors of
the heart. Luisa, Cimas,bregancias mana and Belén for this space in
order to be able to share withthem with much love the story of my
(02:20):
little warrior Maria victory and let's enormously great your time that this with
us here sharing this important information.Luisa, in your biography we found out
that your daughter has several optical daysand that you found out during a pregnancy.
You can explain to us how ithappened, what happened during your pregnancy
that you saw this concern. Well, the truth is that it wasn'
(02:42):
t a concern or a motivation thatcame to discover Maria Victoria' s diagnosis,
but they just told us in aroutine checkup, and not so much
routine, because in reality it wasultrasound four of us, we that made
her face known, see her faceand went to the diagnostic imaging doctor and
(03:07):
we echoed four d and at thatmoment this doctor told us something happens to
Maria Victoria, something happens to thisbaby. He won' t be able
to be born in San Juan.This baby has to be born in a
(03:29):
center of high complexity, because thereis something in his heart. That'
s what he told us. Well, she referred us to a child cardiologist
and that' s what we didimmediately We consulted with the most experienced child
cardiologist here in San Juan and sheconfirmed the diagnosis through an echocardiogram. Dobr
(03:54):
told us that she had a venticularauricular block with a complete gene that of
the three blockages that exist, shehad the worst, the most serious.
It turns out that the conductive channelbetween atria and ventricles in Maria Victoria had
(04:16):
been blocked and they didn' tknow why. Just that something happened during
the pregnancy and that channel that droveelectricity was blocked and it was irreversible.
There was no way to deal withthat blockade, so they told us that
(04:40):
we had to go to Buenos Aires, to a center of high complexity where
they could control and follow the specializedmedical pregnancy and that this good baby was
born had to, of course,be born in such that he was prepared
(05:01):
to be able to cope with thatdiagnosis. This was how we had the
prenatal diagnosis and we could, ofcourse, prepare ourselves, since immediately after
the two weeks of the diagnosis,we traveled to Buenos Aires and once we
(05:24):
arrived we were asked to stay.They wouldn' t let us go back.
We were told that we had tostay for the duration of the pregnancy,
because they really had no expectation ofthe good evolution of Mary Victoria.
That' s how we heard Actabecause I would like to put some nice
(05:49):
words to this and he said again, but positive to know during brao proco
diniste that it cannot be repaired,but in reality, very positive to voluterate
s boot and you explained us alittle bit of the atrial block. You
can possibly explain the others, becausethey are the Tomanio victory. Well,
(06:12):
like you said, it' snot really news you expect, it'
s not something you' re preparedto deal with. No, but I
think prenatal diagnosis is fundamental. Itis what opens us up, the possibility,
(06:34):
what gives us a chance, whatcan lead us to that baby with
a different heart, can, cangive and have victories over what is expected,
which would be that the baby isnot born or that is born and
(06:55):
dies. This allowed us to prepareourselves, since it was already from the
emotional, from the spiritual. And, well, it was almost four months
too hard to have that uncertainty,that we didn' t know what was
going to happen. But finally hedid make Victoria be born and good that
(07:23):
she had that chance to be bornalive and fight. And well the truth
that I think that' s likethe tool that one can get to have
or the resource that one can getto have inside this whole situation and inside
this whole storm and this black cloudbecause of this so painful news that one
(07:49):
gets with mom and like dad.You hadn' t spoken. Now a
little bit of auripopricular blockade, sincepreviously anticipating us, he responded to take
in history yes maria. Victoria wasdiagnosed in the pregnancy of the block,
but then, when she was inintensive care for almost a month and the
(08:15):
usual priority was for her to survive, for her to evolve and reach stability
to be able to operate, sothat she could do pacemaker surgery. So,
well, the first one as thefirst goal, it was that,
not because she was born practically lifeless, with many caves to overcome, but
(08:43):
as a priority it was to stabilizeher, to get them out of all
that fattening her. I know shehad a little more weight so she could
face that pacemaker surgery. Her surgeryis done with pacemaker surgery. Well,
(09:05):
it was also a super, superhard stage. But we got ahead.
It begins to evolve favorably and atthe same time they give us this second
diagnosis. We, believing that everythinghad already happened. The battles had already
been defeated and everything was quiet andit was now a matter of just enjoying
(09:33):
it, taking care of it.They tell us there' s a second
diagnosis. And that' s whenhe destroyed us again, he devastated us
because they told us he had anon- compact heart disease. It usually
evolves for bad, let' ssay together and associated with the blockade was
(09:56):
like a horrible combo. So,well, it was like very hard,
very difficult to retake that new challenge, of that new challenge over time,
this niocardium or non- compact isthe wall of your left ventricle that was
not reached. So that wall islike there' s hollow holes left in
(10:24):
that wall, it' s likethey' re missing bricks, a thing
like that to graph it somehow,so there' s holes in that wall
of your left ventricle, and fromthose holes there' s some trabeculas that
(10:46):
are like carnose. So, andit' s bigger, it' s
yes, it' s a hypertrophicventricle. Okay. The question was that,
despite not all your diagnostic gestures,Maria Victoria began to evolve very favorably,
very but very favourably. And shealso had a mitral valve failure,
(11:13):
but it was mild in her earlyyears of life. It was mild,
so the truth had an absolutely favorable, miraculous blessed evolution. Those are the
other diagnoses he had. Maria Victorbreathes when you have news to move inside
(11:37):
your country. You had to moveGod from loving victory in any hospice to
the part you had to move tobe able to give birth, to be
affronted, to have some other knowledge. Yes, yes, yes, of
course there were many situations and challengesthat we had to overcome. We had
(12:01):
to move from our province, whichis a very small province, one to
the capital of the country and allthat meant, not because we were people,
to say the least, and wefeared the big city was terror that
I had Buenos Aires. That wasreally a big, big fear that I
(12:26):
had to face and that I hadto overcome. Other challenges were to expose
our house, our jobs, andto install ourselves in Buenos Aires for as
long as it wasn' t,we didn' t know how long we
(12:48):
were going to have to stay there, because we didn' t know what
was going to happen with pregnancy.We were told that Maria Victoria did not
have almost ninety percent chance of deathin the womb then they were truly an
absolute uncertainty. My youngest daughter,Valentina, was three years old at the
time. She had to leave hercolencio, get on a plane, stop
(13:11):
seeing her family, her pets,her house. All of a sudden,
get to a city and be lockedup in a little apartment with the mom
who was in the hospital all dayand she and her dad both alone in
the apartment. Well, they usedto play nice,' cause there really
(13:37):
wasn' t anything else to do. And well there were many challenges,
much anguish, anxiety, fear,my husband very distressed, not only for
Mary Victoria, but also for ourfuture, because he had already left his
job, also this question of howwe will face the time we have to
(14:00):
be here good. There were reallyso many, so many people, the
challenges, the worries and tensions thatone experienced going through a similar situation in
him, all that way and throughoutthat process. Of course there were people
(14:24):
who accompanied us, supported us,supported us, supported us, there were
many angels who were always there togive us that support and that support and
thank God, who never abandoned us, because, besides all this, it
(14:45):
was not only that of Mary Victoria, but all that implied many more things
in the middle my in- laws, my husband' s father- in
- law, an unexpected death,a young person in all sixty- three
years. They call us one daymy sister crying desperate that they had found
(15:11):
my dead father- in- lawin their house. It' s my
turn to give the news to myhusband and well, at that moment he
had to travel to San Juan desperatelycome to fire his dad, bury him
and return, because, obviously wewere with the whole Maria Victoria issue.
(15:35):
We had already been discharged, butit was monitored 100% for any fallite.
We immediately had to do the pacemakersurgery. She had forty heartbeats during
pregnancy, a baby needs at leastone hundred and fifty to one hundred and
(15:56):
eighty beats to survive pregnancy, becauseit is not easy to survive a pregnancy.
I' d say it' sa great miracle. Then that heart
that has to pump blood for everyone, so that they reach all the organs
(16:18):
and those organs can develop. Themillet had only forty Latinos, nothing but
forty. Then we, when theygave him up with forty beats and told
us well you can go home,it was one thing we couldn' t
believe and we said it there forGod' s sake what we' re
(16:38):
going to do. And well itwas like my God something that really of
words has that limitation of not beingable to express all that experience and that
experience. So that happened that myhusband and son died. I' m
(16:59):
sorry my father- in- law' s father- in- law,
my husband' s father- in- law and my husband' s father
- in- law, for Iguess coming back super fast, because we
were with weed victory there, withforty little beats in his heart, not
knowing at what point he was goingto need the surgery. And well she
returns and at twenty- tencas theywarn us that they fail and mother-
(17:23):
in- law my husband' smother, she had a rather advanced alrstamer
and, evidently, the departure ofher vine as it affected her, she
found out in everything because she wasabsolutely pratid. But we assumed that she
(17:44):
absolutely felt the absence of my father- in- law, because she cared
for her all day twenty- seven, so twenty days after my father-
in- law' s death mymother- in- law died and two
of my mother- in- lawwas missing for Maria Victoria' s surgery.
So my husband didn' t havea chance to come to San Juan
(18:07):
and fire his mom. That wasvery, very painful, but we had
to turn it around and give ita meaning that empowered us and helped us
get through that situation. Not becauseit wasn' t like it got very
hard to resist. So we saidgood it excited me. We said surely
(18:32):
they went to make the angels ofMary Victoria and help them to go through
everything that was coming. Because thetruth is that surgery was a very,
very large, very strong surgery andI always think that the strength, the
(18:52):
strength of the parents play a veryimportant role. Then we had to pro
- programme them to get her outbefore Maria Victorias, no matter what was
going on, and so we wereable to overcome that great adversity as well
(19:18):
And beyond all the pain experienced,we could not deny that, behind all
that adversity, a great blessing wouldcome to us. And that blessing was
that Maria Victoria managed to overcome everything, managed to overcome death, managed to
(19:38):
overcome the forecasts, achieved the impossible. So that happened to us, too.
Luisa asked him. It' sa pretty hard process, because not
only did they have to face unexpectednews of a being who, as I
said well, right now with alot of effort and after a pregnancy you
(20:03):
lose that comes being what we commonlyknow as a be of something iris,
but you also have to face yoursituations away from home, you' re
still out of your province. They' re back. No, no,
we' re back. We weresix months in Buenos Aires, when Maria
Victoria was born in the three monthsof her life. There we were able
(20:26):
to return and since then we beganto travel every three months and as she
evolved in a favorable way, wewere able to space those controls more and
do the six months. Currently wetravel twice a year to Buenos Aires to
their controls and here in San Juanwe control it every three months, that
(20:52):
is, every three months it ischecked once here after three months in Buenos
Aires, at three months they haveSan Pan And so to close the first
segment, almost always, not tosay always with us mothers we choose the
names of our children since we arepregnant. We know that if you are
going to be a child or childvictory it is a man who was already
(21:18):
chosen or came after all the situationyou had to live. We haven'
t chosen it since before, youmust before we know for from your Spanish
cardian, that kind of name,just like your first daughter' s name,
Valentina, are names that mothers mostlychoose when their children pass, when
(21:38):
their babies go through processes. Theyknow that it has not been easy and
to place those names because they demonstratedin some way or the exact victory or
courage. And so listening to themI propose to listen to the story,
because you may think that you decidedthe name after all, but I already
(22:02):
had it seems that we already hadan idea that it was going to be
a victory in what you were goingto live exactly like that. So it
was, it was not in vainhis name, it was not, evidently,
we were born, it was notrandom, something surely there was some
(22:23):
divine flash. He came to meat some point that he told me you
had to put victory and my husbandchose Mary and good the Catholic religion.
We recognize Mary as the mother ofGod, of Jesus, and we said
(22:45):
if you turn around, we tryto find that meaning too not to see
the name. If you turn itaround, you say Maria' s victory.
This was the victory yes Mary exact, yes, yes, the truth
is. This will continue to dothis content. It is not intended to
(23:11):
replace diagnostic advice or professional medical treatment. The opinions expressed in this podcast are
not those of Horge unighted Lo,but those of the hosts and guests and
they intend to generate a debate onissues related to congenital heart disease. Welcome.
(23:34):
Again, before the break we learnedabout the situations experienced by Maria Victoria
and her mother. Now, Luisa, you can explain how you deal with
the different conditions that Maria Victoria Guauhas. It is a difficult question,
(23:55):
but today try to do everything possibleto answer to see about the outside world,
aces with its conditions related to itsconditions. The truth is that it
is not so much the struggle thatI live, it is not so much
(24:22):
for the outside, but rather forthe interior, because she, despite all
the diagnoses that she has three,is a very healthy girl, very healthy
since she was a little baby,that is, after she went through all
the intensive care, that she wentthrough the surgery, she began to evolve
(24:48):
and since then she has been agirl that did not show any different kind
of condition, It was not likean absolutely normal baby, with a normal
life, with an absolutely normal growthand development, according to hyper monitored and
(25:14):
hypercontrolled, because she had the samediagnoses, not from the false, but
nothing. She was absolutely normal,even very much a relief with her,
unlike my other daughter, who,being a healthy child without any heart disease,
was living from little girl all thetime and weary victory. It turns
(25:37):
out nothing, that is, I' m never a girl who didn'
t even have a little fever mademe during Baby. Nothing I mean is
nothing, nothing a thing that wereally couldn' t believe and to this
day that we can' t believeit, or it' s like saying
wow is a miracle every time becauseshe presents absolutely no symptoms, no signs,
(26:07):
no signs or any evidence that shehad that heart. There' s
different. So really that she givesus as she gives us as, on
the one hand, that peace andthat assurance of seeing her grow healthy,
strong and leading a completely normal life, has no limitation whatsoever. You just
(26:38):
have to take care of her fromthe blows by the embarrasses of the blows
on her bancita. He can't, of course, do a competitive
sport, so we' re alwayslooking for some discipline, like dance,
(27:00):
but so far we haven' tfound out what' s right, because
up to here I don' tlike anything and what he likes or can
' t do, for example,football or artistic gymnastics. So, so,
well, it' s really ablessing and a miracle beyond everything she
(27:21):
has. As I was saying,it is completely asymptomatic, but yes,
of course, it is absolutely controlledand monitored and that in school, for
example, they know their condition,they know the care they have to have
if at any time they put theirlips purple or if they see her breathing
(27:47):
with difficulty, etcetera, etcetera,that is, it is like all the
alerts are on, but we havenever had any situation that has taken us
as assistance wagon. I' dsay that more than what I deal with,
it' s with everything internal,but with my internal fears, it
(28:11):
' s what makes my life difficult. But if I look at her,
it' s like that' swhat I use to try and convince me
that everything' s going to goon as it is until today. And
(28:33):
that' s the way I foundit. It is the tool that I
use daily to give me strength,security, to overcome all fears and fears,
because, of course, that one, when you go to the doctors,
they tell you, they tell youthings, then you are always in
(28:56):
that fear, with that anguish,by lis by uncertainty, so it causes
this to not have the certainty ofwhat is going to happen with that heart,
of what is going to happen?But you have basically with her we
don' t have any kind ofchallenge we have to deal with, but
(29:26):
simply basic care for her pacemaker totake care of her perhaps a very hot
day, with very high temperatures,the tas not to be exposed to the
sun or, to drink lots ofwater if, of course, be very
strict and disciplined with her measure.So what we could say that the great
challenges that you have to face dailyis with yourself absolve each day I realize
(29:52):
that children born with heart disease,conjuymic are that birth warriors. It is
impressive how they adjust to everything thatis happening to them and try to have
a life, even if they feelbad, to have a normal life.
(30:15):
Well, as you know, I' m a cardiopath and I remember that
all I thought was my God I' m gonna be okay. It'
s all right,' cause mymom tells me everyone' s gonna be
all right. And I just wantyou to know as a person with heart
(30:37):
disease that you see my mother isthat for us the mother is the most
important thing and that all you're doing will see the results of how
that child is going to be withyou. For us, the pacas cardia,
the mother is good, the VirginMary is the maximum, so everything
(31:00):
you are doing and don' tbe afraid. Don' t be afraid
because she knows she trusts you andshe knows that with your help she'
ll be able to overcome everything nowI wanted to ask you what the day
(31:22):
is like for Mara Victoria. Iunderstand that you told us that she knows
her condition, but more or lesshow she takes it, that is,
how she behaves to her and howher day is. Well, oh,
I' m already absolutely excited.I' ll see what' s true.
(31:45):
Mothers are the best in the world. The child' s mother and
I have told Marta many times theyare also the best in the world.
There are no other mothers like motherswith children with carrepathy. For me,
thank you very much, thank youvery much. Well, Maria Victoria,
(32:07):
she knows she' s got apacemaker, but she doesn' t know
anything about her heart. And whynot, because she was never, ever
introduced to the restlessness. Then wenever had to tell her anything because she
(32:28):
never asked us absolutely anything. It' s not that we' re hiding
it, but we just want itwhen the time is right. I think
she' s going to be arousedby that interest, that curiosity and she
' s going to ask us,but for the moment she hasn' t
(32:51):
asked us anything. She simply hasas naturalized to go to the doctors every
three months who do her ep cardiogram, to put her holiter on, to
control her pacemaker. It' slike she was born and they were her
first experiences. So I feel likeshe naturalized him and she thinks it'
(33:15):
s the normal thing, which isthe natural thing. So I think that
' s where it comes from thatyou haven' t been presented with the
restlessness yet. And on the subjectof pacemaker, he knows that he has
a pacemaker in his belly, acomputer that has to take care of it
(33:37):
and that that computer is simply connectedto his heart and sends him more strength.
He doesn' t know anything elseand we never read. We'
ve treated her like a different ordifferent baby. We' ve never overprotected
(34:00):
her more than her other sister.Never have we ever said alas, poor
thing or anything. Nothing. Weretamas as it is, had absolutely nothing.
We have never told them that wehave not told them. We don
' t go through life telling peoplewhat they already have to look at differently
(34:22):
or feel sorry for, not atall. That is, Maria Victor is
a normal child and if at somepoint the situation arises that is that and
it must be mentioned, it ismentioned, but generally no one knows what
(34:43):
happens to her, because they seeher as a completely normal girl and the
treatment of us is absolutely enormous andI believe that that has been very,
very decisive in her evolution, inher growth, also at the emotional level,
(35:07):
because she is a girl who,as she is very well planted on
earth, is very rooted, hasa super powerful character and she is and
I am always to her and toher little sister, of course, to
both of them I always talk abouthealth. We never talk about illness,
(35:27):
but we always talk about health,life, love, abundance and all the
time, like we' re vibratingthere and in that frequency beyond me inside,
of course, I have my momentswhere I die of anguish, fear
and usually every time we have togo through control. I' m practically
(35:52):
like a guy who' s gotto face me. I don' t
know about an odorous battle, butin general, it visualizes and identifies itself.
Identity belongs to a healthy child.It' s not a cardiopathic girl
' s, it' s ahealthy girl' s. That is the
(36:12):
identity of Mary Victoria, a healthy, strong and powerful child, and she
practices her claims every day. Iam healthy, I am love, I
am light, I am strong andI am powerful. But the most important
thing, that my mom also didwith me, is that you teach her
to know her body, that sheknows what her limitations are. That'
(36:35):
s the most important thing. Ofcourse, emotional and psychological health is very
important, and that she has astate of being healthy and calling a normal
girl in a splendid. But aswe grow. We have to work on
that self- care that, ofcourse, independently there' s going to
(36:57):
be a time when something' sgoing to be clicked Yes, it'
s very small. I can tellyou to explain in detail or wells those
words so big that even I hada job saying it. But exactly.
For example, from my perspective sheis fourteen years old. I had a
(37:20):
moment when I was loaned aspects heartsthat have mostly paldiologists' offices that can
be seen and I was torn apart. And for I did not necessarily explain
to him because the heart or comeswith the defect that he has. But
yes, you could explain the partof the reason, but a little different,
because they leave, they go learningwhat' s going on with their
(37:45):
body and they go explaining to othersbecause, for example, the baby has
a bad ability and in you tellher that you have to take care of
it, and you have to takecare of the bridges. And that'
s where learning and awareness begin.And this little friend is with me,
this little friend is with me,and not only do I say to him
(38:07):
that you have to be careful withme, but I start to create in
them that support towards my person thatwhatever happens looks like we have to be
careful with several victories and not thepenalty, not the fact that woe poor
thing, because it has this,no, it' s not that we
have to be careful as we wouldhave it with anyone else, because I
(38:29):
don' t have a capable evil. Super did something, but if it
hits me, it' s gonnasneak me in. It' s like
creating this awareness that if I'm healthy and if I' m okay,
but that doesn' t mean Idon' t have to take absolutely
full care of myself. Yeah.Yes, yes, yes, of course,
with Maria Victoria we put a lotof emphasis on how to take care
(38:52):
of yourself to maintain good health.So we' re always teaching ness and
putting a lot, putting a lotof emphasis on habits, on healthy areas.
So that' s what I'm marking for now, because,
like you said, she' svery little. She' s five years
(39:14):
old, and yes, at school, her little buddies know she' s
got a tummy cover. Then,of course, they take care of her
at recess. Her dreams are alwayslooking out for her. Gymnastics classes are
also very careful with the theme ofhydrating during the four hours that is there
(39:38):
at school. And yes, yes, of course, that we work in
habits of care and in healthy habitsand little by little as she goes,
that in her this curiosity, thisinterest and this restlessness is generated. It
(39:59):
' s how we' re goingto provide you with information and always,
of course, supported by a psychologistor someone who can prop us up and
tell us good, this, yes, this doesn' t. I think
you have to arm yourself as ateam to be able to also in your
(40:22):
own important and pro for all sto those books. Yes, they are.
We need to. That' swhy we' re here precisely because
we' re saying this program andthank God you get a lot of mothers
for putting yourself in situations, becausethis is also the adventure of sleeping with
a tapiopapiía. No one we've interviewed has ever seen the same thing.
(40:45):
Everyone has experienced a perspective, soit is very important support as it
sounds, as it is right now, as emotional as it is psychological,
not only for them, for usthere are days that it seems that we
are going to eat on board andthere are days that in Gosdo ate us
(41:07):
exactly absolutely and for what we sufferfrom heart disease, we have days that
we also want to eat a world. But there are other days that we
want to sleep all day exactly becausewe are tired, because the body does
not give us, but that doesnot mean that something is happening in the
heart. It' s just thatthere can be nature. We' re
(41:32):
different people, but it only makesus less than anyone, that' s
the most important thing, and that' s what we' re also trying
to get people to learn that havinga heart disease, you have a different
heart, but you can live withthe exact different heart, yes, absolutely
(41:53):
clear that you can. Of courseyou can live a beautiful life despite having
a heart been different warriors of theheart. It is a Horth Unite presentation
by Glove and is part of Horgparkst network Holt se Deletrea hug and are
(42:15):
the acronyms of Horthe Night by Globhorgei Nigh The Glob is a non-
profit organization dedicated to providing resources tothe congenital heart disease community to raise,
empower and enrich the lives of membersof our community. If you want to
(42:36):
access free resources from the congenital heartdefects community, visit our Genetic Heartffex com
website for information about hospitals treating children, summer camps for survivors, and much
more before the break. We weretalking about the life of Mary Victoria and
(43:06):
all the challenges she has been through, not just her, but her mother
too. They' re Ramos hisdad, because this is a set.
Here, together in harmony, whathappens with them in one way or another,
We also feel it or we passit or we look for the way,
as we sometimes say that I wantto be the one going through the
(43:28):
situation and not my baby, butit is up to us to do that
support and it is what has happened. I say Luisa, that has been
that support for Maria Victoria in thisprocess so important that it is living with
a cabiopathy. And maximum Maria Victoria, who not only lives with caliopathy,
but also has to live with apacemaker, what is the next step to
(43:52):
continue with Maria Victoria has a surgerythat was where they put the very capable
true and now that in itself isgood. Now Maria Victoria has a mitral
valve reconstruction surgery ahead of her.They never told us that Maria Victoria was
(44:16):
going to need surgery again. Wewere told in principle that in Via Victoria
I was only going to need togo into an operating room to make the
battery change and when the cables weredamaged there, they would need major surgery,
(44:38):
chest surgery, to be able tochange the electrodes of the leather pacemaker.
They told us that these cables lastfor two to twenty years, that
is, we never made the ideathat Maria Victoria would go to surgery soon,
(45:01):
but it happened that after two yearsthat we could not go to the
controls because of the pandemic, wereturned in January of two thousand twenty-
two and there they told us thatthe inadequacy of her mitral album had worsened
and that it was possible that shewould need surgery, since she had to
(45:24):
take care of a lot of leftventricle. We were told, possibly we
said well, because yes, horriblyit is not necessary. Yeah, and
it could possibly be maybe five years, ten years, and you' re
(45:45):
talking to people and they' resaying, oh, no, but my
dad' s eighty and he's mitral valona sufficiency. Severe and talk
to someone else and don' t. Yeah. Well, then we really
got the idea and we made itthink that I wasn' t going to
need the surgery and if I neededit, it wasn' t going to
(46:07):
be soon. Then nothing like wesaid. Well, everything' s fine.
All the same. When we returnedin July, in July two thousand
twenty- two did not tell usanything, that is, everything remains the
(46:28):
same and already in January two thousandtwenty- three we ran into a wall
we crashed into an entire building,because they told us that Maria Victoria needed,
she was going to need surgery ina year. And so, well,
there it was like again we diedand again we had to do that
(46:50):
little ant job, to rebuild ourlittle soul from the little part and try
to stick each of its parts withno longer knew with what strength, but
well we did it and today weare in that sphere. In July we
(47:16):
return to control and there, withthat expectation of what it is will surely
give us already the dates of hissurgery for the beginning of two thousand twenty
- four. So we' repreparing emotionally, psychologically, psychically, physically,
(47:37):
and in every possible way for whenthat moment comes, always, always
without letting go as that hope thatthey tell us they won' t yet
need it. We can wait alittle longer or the valve' s insufficiency.
(47:59):
Now she didn' t return tomodegrade. One always has as hope
that God will charge a miracle,that only he can act and do those
things that for science have no explanationand that, from the scientific and from
(48:22):
the rational, one says there isimpossible. No, but well, we
never let go like that hope ofsaying good why not. That is,
miracles happen and if it doesn't happen, because we are absolutely convinced
(48:44):
that everything will go well, thatif it' s what she needs and
it' s for her greater good, then we will be there at the
bottom of the barrel to face surgeryand for everything that has to come in
(49:05):
search of her recovery and that thatlittle heart better, is healthier, stronger.
So now we' re on thatother mission. It' s like
it' s never over. Onealways has new missions and new adventures in
which to dive when he has achild with a different heart. But,
(49:30):
well, here we are always love, can everything, love, what I
thought everything and clinging to love andlife Luisa. What is the prognosis of
Maria Victoria right now and for thenext few years would be what the prognosis
is. I don' t knowif I should have a prognosis. They
(49:53):
never told me I never asked,I never looked for what we say,
and like I say, they didn' t give me a prognosis. It
' s like in every control andit' s good we' re going
step by step, not, infact, when you explain to us from
(50:15):
the next surgery, in part ifthat' s not a Commission Sycle that
' s going to need surgery soon. But, as we were saying right
now, mothers' visions are different, for there are some that they can
say in some time. For example, worth the Redundancy you gave an example
(50:37):
of my son himself. He hastwo surgeries, the glane, the transposition
of large vessels, the lens thathe was given at the age of eight
months by the fonda that they didto him at the age of three and
a half years. He now hasa likeo of valves that he is working
with more than one medicine and sometimesthat he has been asked in these years,
(50:59):
from three and a half years tonow, fourteen years ago, that
if he is going to do anotherciology. Well, the doctor tells me
that maybe when I' m anadult, because he' s giving me
a promosis well that maybe that's the key word we prefer more to
(51:20):
himself. You may have to havesurgery when you' re grown up.
It' s just that when themedication they see, we already got the
medication It' s been a while. It should also be remembered that in
the flesh, the studies of congenitalcariopathy are progressing more and more accurately.
So, for example, what Ihad, the syndrome that I have,
(51:45):
there are people who couldn' tstand even forty years and look at the
new vidicaments, with the new thingsthat have come out I have been able
to maintain myself. Then that,little by little it will advance and there
will come a time that you willnever be able to heal, because the
one born with a congenital empathia letterfor life, all life. You'
(52:07):
re going to have it and you' re going to make a heart disease,
but at least you' re goingto have a quiet life, even
though I tell you with everything Ihave, I' m a quiet and
normal piece, because I' mhappy and for me life is one,
(52:28):
but it' s that you livein a war. Have your haartime parbiopathy,
but you give it to her exactly, too. Of course not the
Kippelia, the fight is a church, no and look at yourself, maybe
you too. As you haven't given yourself a few forecasts, because
(52:50):
maybe remember that you also explained thatthe block that you already had the strongest
of all the blocks that can bediagnosed and maybe we are in every day
seeing that brings new everything by thenwe know what is going exactly. To
see what is the blockade would beabsolutely treated with the Pacemaker. I mean,
(53:17):
the block isn' t irreversible andit doesn' t have treatment,
but to look at that one sortof thing, one way with the pass
mark is because the Marcapasas sends himall that electricity he was missing. Now.
(53:38):
The uncertain is his non- compactmyocardium. Yes, it has evolved
so far. She' s superfavorable, I mean, that non-
compact myocardium, it hasn' tgotten worse and she' s got a
(53:58):
good contractility, that is, thefunction is preserved. So it kind of
goes on like that, wonderful.And the subject of mitral insufficiency, which
clearly at first was mild, why, because she was exact, that was
what I have in saying has as but here the situation becomes more difficult,
(54:19):
as we are growing accurate, accurate, exactly as she was born with
that congenital malformation of the mitrium valve. At first wonderful, she was small
and the insufficiency was mild. Butas he has grown, then that valvulite
(54:40):
no longer reaches him, because thatvalvulite, he did not grow. So
that' s what needs to berebuilt now. But it' s really
like I don' t know ifI' m gonna be able to explain
it with terms that understand why I' m not a doctor. But it
' s like your heart is likeyour heart has adapted to that form,
(55:06):
let' s say that form,and it kind of works perfect. Having
that, he works well in whatsends the blood that every organ needs.
And it' s like everything isworking in harmony, even with all those
(55:29):
non- conditions, that is,with those conditions, even with those conditions.
So, well, maybe all herlife she goes on like this with
that myocardium, working the same wayand solving this mitral valve failure. We
(55:51):
' re still good, okay.We' re going to imprecise how the
body gets used to you to whatyou have, for example, every time
I go to the doctor and thenurse takes me what' s called oxygen.
Well, you can' t beokay. You can walk, your
(56:14):
father, for I my oxygen issixty- five to seventy- five,
that is, I have lived everythingin my life with low heaven And for
other people of course, if youare seventy- five, you are dying,
but I am not or to meas much as I tell you your
(56:34):
story I laugh. For me therewere eighty. It' s a holiday,
I mean, I' m fine, I' m fine, so
what' s like everything' sbeen so studied. Everyone sees it as
not happening. And it can,because the human body is perfect and the
body knows how to adapt to allthose things. They don' t have
(57:00):
the word. How wonderful you don' t have in the last word that
you have to follow suff of recommendations, you have to be everything they say,
of course, all this. Butto my mom, since I was
three months old, that steam andwhen I' m six, when you
' re seven months old, whenyou' re 50 and you' re
(57:25):
50 and I' m still righthere, I can' t imagine who
decides. You know who absolutely,absolutely does. I think it' s
kind of good. Doctors have tosay what they' ve studied and what
' s in the books, butnot really what I was saying is the
(57:46):
one above. That' s right. They told us so many things about
Mary Victoria, so many things forGod' s sake. What would be
the advice you would give to boththe doctors and the parents of your country,
according to your experience. And experiencewe mean knowing during pregnancy and how
(58:07):
you had to handle this situation.You move from the place of dwelling and
start working, because the advice Iwould give so much to parents, to
doctors. I don' t knowif so much to the doctors, but
yes to the parents who get newslike that, they keep fighting for that
(58:32):
baby, that baby wants his parentsto believe in him. Yeah, because
out there fear wants to slow youdown, fear wants to catch you and
it wants to treat you. Butyou have to hold on to love,
you have to hold on to life, you always have to hold on to
(58:53):
life. First you have to fightand give everything. I mean. We
didn' t with my husband,we said well, okay. They tell
us that Maria Victoria has no,she has almost no hope, but we
are going to fight and we aregoing to give everything. And it will
be her and God and her.When I believe that every baby feels not
(59:20):
the strength of their parents, theirparents, strength, faith love, then
they cling to that. I mean, I believe that Mary Victoria was so
affected by life, by the loveshe received, despite all the fear and
all the uncertainty, that that washer tool to overcome until her own death.
(59:46):
So they fight, they fight,they fight, they don' t
give up, they don' tgive up, they hold on to this
one percent, that one percent,they don' t let go, they
visualize it, and they don't give up beyond all they can hear
(01:00:08):
from doctors, because, of coursedoctors have to say yes or yes,
it' s up to them tosay what' s in the books.
But, well, I believe inmiracles and I believe in that one,
two or ten percent that there ishope. So my message is that they
(01:00:34):
fight him, fight him, don' t give up, feign that little
ray of hope and then God decidesGod and, of course, also the
Baby that' s there in thebelly. I think it' s a
decision they' re making together acontract, they' re making a rope.
(01:00:58):
So that' s my message,that you never lose hope and that
it' s gonna be that one, or two or five percent that there
' s hope. Well, Luiisa, we thank you a lot again for
being with us, for having sharedyour prudence, that we could know that
(01:01:21):
somehow and another we are going wellwith you other parents who are going through
your situation, because we are facingthat news of the candiopapia. He sees
me. Thank you very much,thank you very much. I hope that
yes, I hope that my storycan, can help and can serve and
(01:01:45):
I can dig deep into those heartsso that they never lose faith, so
that they will be filled with hope, that they will grind in that love
and fight, fight for their childrenand help us overcome all difficulties, all
trials. And I think every adversityalways brings with it a great blessing.
(01:02:14):
So you have to stick to that. So I conclude this episode of wanting
heart. Thank you for listening tous today. If you' ve enjoyed
this episode, please leave a reviewof our podcast, on our Whitside Up
at www Parks Ligh the cloop Orkand Remember Friends never give in for winning
(01:02:34):
and two thanks again for joining usthis week. We hope that you have
been inspired and empowered to become adefender of the community of congenital heart defects,
heart eaters with your hosts Bethlehem,Blancton, Jenneferk Inguina and Marta Montero.
(01:02:58):
It is produced monthly and can beheard wherever you have access to podcast.
The new episodes are broadcast on thesecond Saturday of the month
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