Psicoprofilaxis: La importancia de la terapia en las familias de cardiópatas

Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
(00:00):
What I always say to Matí Isand why not, and I tell her
everyone touches her something. The importantthing is to see what we can do
with this. Welcome to your heartwarriors program fighting against congenital heart disease.
I am Malta Raquel Montero, oneof the hosts of this program, and

(00:22):
I am also the mother of awarrior of heart. She accompanies me in
this interview Pelen Blanton, another warriorwith a heart. Today' s program
is about a mother of a heartwarrior from Buenos Aires, Argentina. Our
guest is Cynthia hi Shenko. Wewill begin in the first segment knowing more
about the condition that affects Matthias,his son, which is trunk to the

(00:45):
type one teriosian and when he wasdiagnosed. In the second segment, we
will learn about what motivated Cintia tospecialize in psychoprophylaxis and how this helped both
her and her son. In thethird segment he will tell us the prognosis
regarding the condition of his son,Matthias Matías, who currently fourteen years old,
was operated on at fourteen days.He was born in Buenos Aires,

(01:07):
in Fleni by Dr. Pablo Garcíade Lucis and re- operated at age
four by the same team. Matthiaswas born with a trunk to the terious.
She was diagnosed in the eighth monthof pregnancy by an ultrasound, which
was reconfirmed on the days after birth. The diagnosis was confirmed and re-
evaluated both at the time of thefirst prenatal diagnosis and when Matías had to

(01:33):
go through his second surgery they didpsychoprophylaxis and was of great help. Surgical
psychoprophylaxis is a psychotherapeutic technique that dealswithin an interdisciplinary framework of preparing the patient
emotionally and family group to face asurgical intervention with the least amount of possible
psychological and physical sequelae and welcome tothe warriors of the heart. Cintia,

(01:56):
I thank you for giving me thisspace to tell our story. Crintia in
your biography we found out that yourson has an arterious trunk diagnosis type one.
What happened in your clutch they foundthat diagnosis. The truth is,
I went to a routine ultrasound,and the ecographer started to do an ultrasound

(02:19):
as usual, and he took twenty- five minutes in the heart because he
saw something weird. He told usthat he did not have a high complexity
team and led me to see aspecialist, whom we went to see after
three days, who confirmed that Matiascame with a diagnosis of congenital heart disease.
At that time, what they saidwas that he had a good chance

(02:43):
that heart disease would be heart-trone, but that it was all about
reconfirming and you could briefly explain whatMatthias' condition was. Well, the
arteriosus trunk is a heart defect atbirth, which happens when the blood vessel
that comes out of the baby's heart that is in gestation, does

(03:04):
not completely separate during growth and leavesconnected the horta and pulmonary artery. Then
the baby has no complications during pregnancybecause during gestation, even if the blood
is mixed, because what makes theorte and lung separate is that the blood
is not mixed. But even ifthe blood mixes, the mother is the

(03:27):
one who oxygenates the baby' sblood. So, for that reason,
throughout the pregnancy the baby has noproblems. The point is that at birth
it is where the blood begins tomix and where they have to correct the
defect, since the life of anychild is in danger, that is,
they are at risk of life.This type of heart disease is not compatible

(03:47):
with life. In Mati' scase, he had open heart surgery with
an extracorporeal pump. They lowered herbody temperature to prevent her from having a
brain donor, and what they didwas what the lung would be like.
They put in a very grafted one. The surgery lasted about seven hours.

(04:11):
It was a hit. The goodthing that homo grafts are used is that
it' s not like when youdo a transplant that you have to take
a lot of extra medication to avoidrejection. I mean, yeah, he
had some surgical time where he wasobviously interned with a bunch of machines and
medication to regulate the fluid values inhis body. But then that went unhappily

(04:40):
and he doesn' t take anythingin his daily life. But what it
has is that the homo graft doesnot grow then and matias grows then and
also what the spine graft has isthat not only does it not grow,
but sometimes the form as rejection wouldbe that with the run of the guy

(05:00):
time nothing is calcified then. Whatthey do is they basically have regular controls
where they notice how much they grew, whether they' re getting small is
a good gert or not, orwhether they' re qualifying either of the
two issues that happens first is what' s going to mark the time of

(05:21):
the next surgery. Obviously, everychild is followed by a cardiology team for
life, not that they are kidswho are cardiopaths now all their lives.
That' s what I was goingto ask you about what procedures Matias had
gone through to treat her heart condition. But so far nothing more. You

(05:42):
' ve had only one procedure.No. No, no, no,
don' t look. The firstmatia surgery was at fourteen days of birth
and the second was almost two yearsold had not yet been completed. The
nearly four years old had not yetfulfilled them. In the first one,
nothing went as far as the graftlasted. You think that when a baby

(06:02):
is born that weighs three kilos oralready a child of almost four years,
the fabric changes a lot. Thenthe graft was still small. In fact,
there were things the other kids didand matinated. And after the surgery
he started to do how to runand it was because he was regular.
The doctor always told me he's going to regulate himself. And so

(06:26):
it was. He got out ofthe second surgery and showed up every day
he fell. He fell because hestarted running, because there was something the
body used to limit and he stoppedlimiting it. In the second surgery was
done the replacement of anterior spine graftby a larger one that is the one
that currently has, is checked periodicallyto measure good degrees of stenosis without sufficiency

(06:49):
all questions that are characteristic of apathological heart, because we never have to
forget that Matti has a clear pathologicalheart and has to be done. Holter
is also done, for example,once a year, or cardiogram is done
once or twice a year. Echoalso electrocardiogram. I could also say put

(07:14):
it once a year but sometimes theyask me for doses, do two,
that is, what the doctor demands. Of course, well, we,
as a cardiopath, spend our wholelives in doctors. And but it is
for the good of us the mostimportant thing is that Matthias is learning to
know his body. And that's super, super important, because it

(07:34):
happened to me a lot like that. This one day I could run another
day. If you mean one,you never know what your heart will leave
you or not let you do whenyou are a heart with heart disease.
Well, apart from us, whatI always saw because, obviously, there
are times to see that Matías isnow fourteen, but he' s had

(07:57):
a lot of moments where I don' t want to go Mom, I
don' t want to go inthe middle, and it' s okay,
not because poor foot has a hugeburden with all this, but that
' s always what gave him backis matu. You can do everything you
can, because we' re doingeverything so that you can be at your

(08:20):
maximum. It doesn' t matterwho your maximum is. It' s
just that there was asking Cyntia.Yeah, when you met the math diagnosis,
you' d heard earlier about congenitalcandiopathy or even though you' re
in the medical field because I'll be a psychologist or it was so

(08:41):
new to you this look. Yeah, yeah, I' m a psychologist,
but the truth I obviously knew wasthat there were heart disease, if
you tell me about mati in particular, I haven' t heard her name
it in my whole life as abunch of others, of which I already,
obviously, have a lot of information. And what I can tell you
is that, beyond being a psychologist, not as a mother, receiving that

(09:03):
is almost one is terrifying, nota sentence, almost death. I'
m sorry at that moment and I, at least to myself, what happened
to me is that I start asking, start understanding anything. It calmed me
down, because when as you understandwell, you can do something. Well,
this isn' t the worst thingin the world. Well, this

(09:26):
has surgery. This can be measuredin such a way as poempo. Sure,
yeah, it takes a long time. I remember that at first I
spoke to one who is very closeto me, now to a mother of
a boy who also had congenital heartdisease and I was terrified. I didn

(09:46):
' t understand anything matic I thinkI was at most two months old.
I was already operated on, Iwas already discharged from my home, but
with home hospitalization, taking dibretics,measuring magnesium, potassium everything, and I
remember that one. At one pointArry told me you' re going to
be happy again and at that momentI thought it was the craziest thing I

(10:07):
was told in my life and nottoday. But it takes time. It
takes time to understand how to getin the exact path, how to make
a journey, how to stop fighting, how to get out of it,
how to stop fighting, how todo something with it, how to do

(10:30):
something with it, but not tobe able to make love to it,
how to put words, how torespect what you feel good, and that
' s something you wonder your wholelife as a cardiopas sometimes you wonder your
whole life why I am and it' s a little bit right now that
he' s a teenager. Thingswhen I was a teenager, I had
a lot going on that I toldmy mom why, why I had to

(10:54):
be me, because I had todo it, because there were so many
things I couldn' t do,that I saw my fingers do more friends.
Then it was a difficult situation,but one little by little he is
maturing realizes that it is what hetouched and that we have to keep fighting
until the end. That' swhat I always tell Mati is and why

(11:16):
not and I tell her everyone touchesher something, the important thing is to
see what we can do with this. I always tell him he' s
so wonderful at so many things Imean. This is one more thing You
know I feel that way. Ifeel that in my life I have a
purpose and that' s why Iwas born that way then, when this

(11:37):
comes to your life, it's because you always have a purpose for
that and now I wouldn' ttrade my life for anything. I'
m fine now that I have nodoubt about that. I think it'
s just to see what we dowith this. Not clear, and that
' s where it comes back.This content is not intended to replace diagnostic

(12:00):
advice or professional medical treatment. Theopinions expressed in this podcast are not those
of Horge United Lod, but thoseof the hosts and guests and they intend
to generate a debate on issues relatedto congenital heart disease. Welcome back.

(12:20):
Before the break we met about thesituations experienced by Matías and his mother,
now Silvia, We know that,apart from being the mother of a young
man with heart disease, you arealso a psychologist and you specialize in psychopathphylaxis.
You can explain to us about thispsychotherapy and what made you specialize in
it. Well, I tell you, when I found out about Matti'

(12:41):
s heart disease, I had noidea about heart disease or anything. I
was pregnant, scared, and itoccurred to me when I went to meet
the surgeon to ask him to showme where Matias was going to be.
He agreed, showed me the room, the screens, the machines, and
that gave me so much madness.But at the same time it began to

(13:03):
calm me down because I was likebeing able to frame what was going to
happen when Mati was born, Ialready knew what to expect. I was
also greatly helped by her asking back, which explained to me that sometimes doctors
find it very difficult to talk toparents because babies are very skilled. He
explained to me what it means thatthey are skillful, that they go from

(13:24):
being right to being wrong or viceversa. Very quickly. Then he told
me that I had what, thatthe doctors weren' t going to come
and tell me your son is fine, because they don' t play it.
So what did I have to dothat I had to count machines.
Then I remember. I arrived thefirst day I counted machines. Sixteen machines
had Mati connected and as I sawthat they lowered the number of machines.

(13:48):
That told me that Matias was movingforward, too. What I think is
that these are moments of great anguish, where one gets messy, the world
gets messy. Everything is very easyfor us, from how we eat,
from how we sleep, not andeverything becomes very hostile to us. And
I think I know what to expect, which is expected in a certain situation,

(14:15):
also because, for example, Iwas told that eighty percent of the
guys who had the surgery that Matiaswas going to have went on dialysis.
Then I knew that Matias could goout with a dialysis machine. This did
not happen, but had it happenedit was something to be expected. Then
that, at some point, gaveme some peace of mind, because it

(14:39):
was within the framework of the foreseeable. And I think that' s foundational
to be able to go through notsuch a disorganizing situation in a slightly more
organized way for a scientist while youwere talking about what you had to live
in the process of knowing about thecondition of goal matías. In a few

(15:00):
words, my son' s cardiologisttold me and I guess now, because
you' ll explain a little bitmore. He told me at a certain
point, the surgeries are done tochildren when they are young, because children
tend to aulviride and their different recoveries, because they are not like the adults

(15:20):
who feel more the performances they areliving. And that you would tell me
about that thought you' re tellingme. It' s true you don
' t necessarily look. I tellyou well, Matti' s first surgery
was at fourteen days and the secondone was before he was four years old.

(15:43):
And then that' s where westarted with psychoprophylaxis for him in one
of four years. And I rememberI told him well, Mati, you
' re going to have surgery again. And he looked at me and told
me how to get back. I' m telling you, yes, Mati,
you' re going to have surgeryagain. You' re already in
surgery. No, I' mnot. He told me to tell him,
yes, Mati, look. ThenI made him lift his shirt,

(16:04):
look in a mirror and tell himyou see the little ray that you have
here. Yeah, and I'm telling him that' s because you
had surgery. He had no recordof that. And at that time we
lived in Brazil. The little friendsin the garden made a video of him
because we were traveling to Argentina tobe reprimanded again Acá in Argentina and in

(16:26):
the video he looks like Matti ina moment takes down his best friend of
the garden, Luishi and sees thathe doesn' t have the rayita and
raises his shirt and continues singing.So yes, it' s true.
He didn' t have a recordfor him. It was a surprise.
When I told him that, thenI felt how IT helps you make this
switch from specialist to patient therapy technique, although you told me that it is

(16:52):
really in this process that you startto know what therapy is. So,
how do you feel. I thinkhe' s asking her what would be
better how you become a patient-specialist. Look first and foremost, because
as a patient you realize the hole. The lack that there is concerning all
this. On the other hand,I, I, I, I,

(17:18):
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I Obviously, I trained myself,too. I have courses, all
facts, but there is a plusthat has to do with having passed with
that journey and as specialists you canunderstand from the emotional, from the theoretical

(17:45):
as well, but also not thisthat I call always being able to be
bridge so that the others can maketheir own process, because the process is
individual, because each one lives itin a unique way. But being able
to be a bridge in that process. That is, the truth is that
to me, for I don't know for having it, obviously,
I have a level of empathy withanyone who tells me oh my son they

(18:07):
' re going to operate from theheart. I have an intimate fiber beyond
my studies. I mean, there' s something going through me because I
was there, because I' mthere, because I' m probably in
another phase of the road, butwe' re all there or we'
re still there. Of course Ido. I think from there it'
s where he brought me the most, because aside, I feel like I

(18:30):
can hear each other' s painand how I feel I can help him
in that pain. It' snot a pain that' s foreign to
me, but it' s nota pain that tears me apart, because
I feel like I can give yousomething valuable and from there feel that you
can donate something valuable to someone insuffering, that can make him a sigh.

(18:52):
For me it' s a lotand you can explain then, being
almost four years we' re inthis dynamic. We do know a little
bit, but we are still veryyoung how Matías helped that psychotherapy before facing
the second surgery. Well, Itold them that Matille had been told to

(19:17):
have surgery. He didn' tunderstand why or what or what the little
ray was. It' s likehe had breakfast together there, well,
and what happens is that at theage of four, the language of the
kids is pretty narrowed down. Afour- year- old to see you
think when I was diagnosed not inMati' s pregnancy I was thirty-

(19:37):
two and I was told about thismultiple nosis, about this of the other.
I couldn' t do that withso many strange and new words.
Imagine for an n four years talkingabout catheter probe These are not words that
are part of everyday life. Butat the same time, you can'
t stop that from coming and atthe same time you can' t deny

(19:59):
it because I can' t sayno. No, it' s okay,
and he takes it one day bythe hand to be operated on and
out of surgery. It' scrazy. So what do you do,
what do you guys do at thatage play then nothing. What we did
was adapt the language to what youhave most. That moment could be appropriated
from language what was a language hecould grasp. Yeah, I don'

(20:23):
t know if the word probe wasvery much his. He never used it
because it had a more basic language. So, for example, Matti used
to call her manguerita the manguerita saidhow many mangueritas she' s going to
have and what she did. Hestarted playing with dolls and put the little
mangueritas on them. I' dtake out their little hands. When he
detects his little ray that the littleray was the scar, he also begins

(20:47):
to draw rayitas to the dolls totell how they are going to stay after
they fix them, because then wealso talked about how they were going to
fix piecitas. So we said tothis guy on this wrong little piece.
Then it' s going to fixthe fish. And I remember the day
Mati woke up from the second surgery, obviously, until she woke up she

(21:11):
didn' t open her eyes andlook at everything. He looked me in
the eye and Mom said,“I have two small sleeves” He knew
what to expect. He wasn't happy, but he knew what was
going on and he wasn' tdisorganizing it. It' s understood.
He knew that was going to happen, and yes, obviously, what he
was doing next was when I gotmy manger out. I don' t

(21:33):
want to get my gas. I' ve got a bigger scratch. He
asked all those questions in the languagehe had at his disposal. But for
me it was wonderful for him,because he could ask when the doctors would
come in and tell him when theywould take my manger out. I don
' t like the manguerita here Ididn' t tell her. I don

(21:56):
' t like the third kate centrallife. It is understood that do what
you are explaining now that we aretalking about being a small child that his
only condition at that time was theheart condition. We' re talking about
psychotherapy being something more concrete. We' re seeing that we' re going

(22:22):
to face everything. As a psychologistand as the mother of a child with
caliopathy, it is quite visual tounderstand that this type of psychotherapy is quite
suitable for these other children who,apart from the caldiac condition, have,
for example, an intellectual disability,a condition of autism. I totally recommend

(22:45):
it. Talking to him is notenough because the type of vocabulary, as
we have mentioned on other occasions,is a great vocabulary of words, big
complicated words. That is why itis very important to me that they can
play performances, because many times itis not the word. It' s
the performance. Then it' sto be able to tell the story of

(23:08):
what' s going to happen tothis doll that' s going into such
a place. I, for example, had a talk with a mother who
was going to operate on the sonand let her take him to the son
for everything he was going to be. You saw the previous one to the
room where they slept and put themlike in a space capsule. But it
' s very good to be ableto grab and say well this is going

(23:34):
to happen like this, going tosee it is not something that is a
session and it is already matías.It was several times because it' s
a lot of information that you needto process and that maybe every session is
taking a little bit of what's going to happen. But it'
s not just the word, it' s also the visual. It'

(23:55):
s also starting to get in touchwith this whole world that' s going
to come clear that it' ssuper important, more so, in kids,
for example, that they have somekind of disability and they can see
it not like it' s comingin like it' s going through various
areas. And that lowers the levelof distress, because besides they' re
kids who need like very regulated,very structured things to not disorganize. Then,

(24:19):
the more you go, you puttogether a frame and better. I
thank you a lot for that answer, because I know that it will help
some mother who is listening to us, because of this dynamic of the Ibel,
he knows it has the Bethlehem StarFoundation. We have many children who
are not just heart disease, arecaldiopathy and have metad sombre, or have

(24:45):
alder, or have disabilities or haveother developmental delays that impact in one way
or another, a way of understandingwhat they are going to live with.
Well, yeah, no more.Matias has an associated syndrome. It'
s also called syndrome and George,which is why he has other issues and

(25:07):
yes, the whole thing of graspingand being able to process certain emotions and
it costs him a lot. Hecloses and I nothing. I try to
help him open up, because theway is for him to get out,
that he can say, that hecan ask and all that is necessary,
and it is with time and withmuch, much, much love. And

(25:29):
how he' s taken it nowthat he' s a teenager, how
he' s taken his health condition, how he' s veiled the practice
of psychopphilapsis to see Mira Matti hasit very naturalized. He doesn' t
remember himself. Otherwise, he wasalways with his little ray. That'
s what the kid' s scarcalled. What' s going on was

(25:52):
already there. See Sometimes he getsangry, yes, he revels, he
asks why everything happens to him tooThere are times when he hasn' t
wanted to do psychoprophylaxis, but well, it' s also part of denying
no because, I mean, he' s angry, he' s denying,
he wants to avoid it, hedoesn' t want to be operated
on. However, he always endedup supporting himself and served him because he

(26:14):
ended up calming him down. Andalso now, which is bigger, it
offers you a place to complain,because it seems to me that this is
also important, not that you canhave a place of complaint because it is
important, because no one wants togo through this. And Matthias, it
' s not the exception and he' s very good at being able to
say it with all the letters.I notice that, since Matti is now

(26:37):
in a therapeutic process, he andI have noticed since he is appropriating that
place, beyond psychoprophylaxis, he isbeginning to stop different, because he can
stop complaining and exhaust that complaint anddo something else. Yeah, it'
s because it' s not acceptingit, but not settling exactly. All
right, well, you' remad to get angry. Fuck all you

(26:59):
want and now what we do.Here' s what there is, what
we do with what' s there. We have a lot of things to
do, where we' re going. And that' s what my mom
told me. You can complain tome, you can do whatever you want,
but here' s what there is. That you have to deal with
that is very difficult and the bigger, that is, when you reach adolescence.

(27:21):
In fact, to that they dida study and says that the cardiopathic
bus already when they turn eighteen,if they have a heart disease, they
have been able to operate it orthey feel well, they don' t
like it and the doctor because whenyou have a heart disease and after thirty

(27:42):
come all the ailments again because itis so, because you don' t
have a normal heart. It's very important to show the new generation,
but they have to be the mostbehind them when they turn eighteen,
that' s their way of life, and that I' ve kept doing
it good. You know it happenedto me that obviously, when he was

(28:03):
little, he went to the gardenand they' re going to eat him
in the garden. I took carenot to put the salt, not because
he couldn' t blah blah blah, and I remember I don' t
know. Two years or three ago. He tells me they put the salt
in the dining room and he wantedto put salt and I grabbed it there,
sat it down and said good.Mati. I can' t go

(28:26):
to school now. This you haveto do alone, because it is forever
you have to take care of yourself. I take care of you, but
the truth is, I' mnot gonna be around for 24 hours.
Yours to take care of you andthis will always accompany you and you have
to do it. Like it ornot, but this is something you have
to work on completely and it isdifficult for both the mother and the heart

(28:47):
disease. It' s religion.He wants to live just like everyone else,
more when you' re a teenager, that' s like why I
have to go on, because Ican' t eat this, because I
can' t do this because it' s very difficult. I had to
learn. I put one thing thathappened to me Cambin I forgot to take
my bigoxin for a week and felldown with a rhythmia that almost killed me

(29:12):
and there I was seventeen years old. That day I understood myself wow,
I really want to live or Iput on my side or not, because
my mom can' t be onme at 24 hours a day. Of
course it is. There' sa part where you have to pass them
on. I, for example,have a gastric problem and when he grabbed

(29:34):
it and told me because I havethis and I don' t know I
have it you saw that you eatfries and I can' t and I
tell everyone they have to take careof what they have to take care of.
But there' s a point whereI can' t wait for my
mom to tell me not to eatthe French fries, she has to depend
on me And now it' sup to you to kill old- timers
of the heart. It is apresentation by Herge Unight Ted Love and is

(29:57):
part of Leaves Hoked Tree h ugand are the acronyms of Horthy Night de
glob HORGEI Nighted Love is a non- profit organization dedicated to providing resources to
the community of congenital heart defects toraise, empower and enrich the lives of

(30:21):
members of our community if you wantto access free resources belonging to the Community
of Congenital Heart Defects. Visit ourwebsite with gennetl Heart Deffex com for information
about hospitals that treat children, summercamps for survivors and much more before the

(30:42):
break. We were talking about theprofession of syn and how he has helped
her and her son during the proceduresthey face in relation to their Cyntia heart
disease. We know Matias had arecent surgery. How was this process now

(31:07):
that he' s a teenager,Well, the truth is that it was
the most time that resistance put MatiNot wanted to talk, he didn'
t want to go until he managedto say that he didn' t want
to operate. Now he doesn't play with dolls anymore. Now talk
puts word for the emotions, whichare very strong. Fear of being able

(31:30):
to talk about physical and emotional pain. It' s bigger now. He
' s got another record. Heasked not only about the pain, he
also asked about death. I've never asked about death. It'
s very strong to hear a childgo through that, but it' s
wonderful to have a place to cry, where to hug and someone can accommodate

(31:52):
all this pain. Not because it' s a very painful process to face
death, not just 14 years old. And what was the type of surgery
they did in his fourteen years,Ahorita, the last surgery had a spinal
surgery, where they put a barand many bolts because he had scoliosis and

(32:19):
fosis and rotation and had already arrivedhe had been using by set for six
years and had reached a degree thatif he passed that grade he could collapse
his heart and lungs. Then therewas no choice. We had to operate.
That' s the surgery Mati wentthrough Nothing you saw. Partner surgeries

(32:42):
are pretty painful. I had,like, a record of the pain,
but nothing you saw. It wasfrom physical pain, emotional pain, and
if I can die and what canhappen and what can' t happen.
It was quite complex for him tobe able to start talking, because aside,

(33:06):
he was very angry. Matias,I was very angry, of course
understandable. We always try to bethe warriors and move on. But it
' s not easy. Every timeyou have to face something or, for
example, when you feel like you' re okay and suddenly, there'

(33:27):
s a change in your life andit' s like you don' t
understand why. So it' sa little hard to accept it on the
way, says the saying exactly,but you' ve done a great job
with your son. I really congratulateyou and spectacular good. I really do.
Thank you very much. I'd like to ask you, you

(33:53):
faced some particular situation in your countrywhen you had to work with the heart
condition of matias. The truth isthat from birth to date I see how
luckily there is much more information available. What I see is that, at
the time of diagnosis, the YOKis very big for parents, that all
parents need a network, they needto understand, they need a support.

(34:16):
To find ourselves in this new worldfor which no one prepared us and which
became so hostile so quickly. Thenetwork and the social bond seems to me
to be fundamental and while it evolveda lot in the last fourteen years,
here in Argentina I feel that thereis a gap that is not covered and

(34:40):
that should be provided, because tosee a body is not entering surgery,
it is entering a person with allthat implies. A person is a body,
it is his emotions, it ishis soul. It' s much
more than a body and the moreprepared it comes in, I say.
You didn' t see that forsurgery they make you presurgical other physical issues.

(35:05):
But if you' re prepared physicallyand emotionally, you' ll probably
get in better and you' llprobably get out better. I' m
totally convinced that' s the case, and I think what' s missing
is that the doctor is more friendlyto that teenager, to explain to him,

(35:27):
that it' s in his terms, not to talk to him surgically,
but to talk to him on hisown terms that he can understand.
That' s important. If youhave a doctor who speaks, let him
treat you like a friend who willtell you why you' re doing that.
I think it would be better foryou to think so. I think

(35:49):
the same thing as you, Bethlehem, you know what' s going on.
It seems to me that sometimes doctorsare not prepared for that and it
seems to me that it would begood precisely that Abraham does not know.
It seems to me that always thebest thing you can have is like being
very clear about your weaknesses. Well, honest, I' m not good.
Well then open that space, thatspace is occupied by a person who

(36:12):
can take care of that, becauseperhaps the doctor is very good at controlling,
living, operating, but in interpersonalterms, no, and good at
delegating that space and giving place tosuitable people in that that he can do
not like the interconnection between the two, because maybe it is asking too much
of the doctor, because maybe yousaw the doctor need not get so involved

(36:37):
when he' s going to operate. But it seems to me that there
is such a space is vital,if it is, as you explained earlier,
to have a multidisciplinary or interdisciplinary teamthat we go in stages. He
' s seeing it so much now. Then tell me how I know what
happens to other types of health conditionsthat when they are not going to face

(37:00):
that condition, one of the thingsthat they recommend is that they go to
the psychologist. For that very reason, what I say is this for me
applies to everything. It has nothingelse to do with congenital heart disease.
He needs to know that the doctorsaw. Sometimes the surgeons saw. They
' re mostly very operational. Theyneed to not think that there is a

(37:21):
person, because I think that ifthey are thinking that there is a person
and that he is going to die, they could not operate then at some
point, detect that and put aperson who can do this interconnection, because
they are located elsewhere and are betterelsewhere. We want them somewhere else.
I don' t know if youunderstand what I mean. Yes, yes,

(37:42):
of course, but it is yourresponsibility to give me the diagnosis and
also to comfort me. Sure,diagnostics, diagnostics. Give me the diagnosis.
Understand me, comfort me, explainit to me in simple. Don
' t be so fast that Idon' t follow you well for what
I need time for and the guyI mean doesn' t know ten more

(38:07):
patients that he has to see thatthey have other heart diseases that he has
to go and route. Well,Vos Holter, well, you' re
in surgery. I can' ttell you about the experience, because I
remember when we went to do thepaperwork for my son' s second surgery,
from Ian, my husband, toldthe surgeon that you could explain to

(38:29):
him again what he was going todo to the baby and the surgeon looked
at him and told him. ButI explained it to you. I mean,
as you' re saying, thetime went by and I explained to
you what I had to explain toyou clearly. But there comes a person
who knows all the questions because tosee when they talk to you, obviously

(38:52):
your husband knew. But there's a moment where you stop listening,
where you don' t understand asmuch as you call your own name,
you can' t answer your name. They ask you what this last name
was and you forgot. Stay nessand I mean, you have to think
good, maybe fire that person alot at that time and maybe a person

(39:13):
going on another lane you understand.I also think that we are not cardiologists
and at that moment we believe thatthey speak clearly to us, but that
they speak to us in words thatwe can understand. I' ve been
talking to a lot of doctors tellingthem that for me, that' s
something that' s important. Iunderstand that they have their kind of work,

(39:37):
they get educated, so they're in college and they don'
t educate them. It' slike when we get the diagnoses, at
least here in Puerto Rico, it' s that we' re part of
the United States and the toxic sayingsare in English, like we did when
we started doing the bios here thatwe have to change because we' re

(40:00):
facing the Latino community and we haveto be looking for the right way of
the diagnosis, because the diagnosis isn' t saying it in English, and
we want people to understand what they' re listening to and we put it
in Spanish. Exactly and more orless colloquially explain how Cind did at first
who told us that it was thetrunk in number one, type one so

(40:21):
that people can understand what' sgoing on, because if you tell him
what it is, the condition won' t understand. It' s just
that even if it' s us, that we' ve been in this
exactly, there' s things thatthe other one says about the syndrome once

(40:45):
again, but never. But wego back to what Cynthia said. We
can' t pretend either. Norcan we pretend that the specialist surgeon caleologist
will sit down and tell me howshe explained it to Matthias during psychotherapy.

(41:06):
We cannot pretend that the taliologist tellsme look at the big step transposition is
that then the idea would be theessential thing, The logical thing is that
the alternatives are sought so that oncehe explained the situation to me themselves,
in the same hospital, in thesame place where I am receiving all that

(41:30):
news, have this other staff whowill take care of making me the drawing
totally what is going to happen,in understandable words for me, because I
am a teacher and I have theability to search on the Internet and I

(41:52):
have but a great majority of peopledo not max out in these places in
Latin America, where we know thatthere are many those parents who are going
through this situation and do not haveas many facilities as your country is,
particularly yes, my country, thatthere is no light. Then I ask
you, Silvia, you who arein Buenos Aires, that you practice this

(42:17):
kind of psychotherapy. You understand thatcarrying it out in a hospital with asking
is enough or you understand that youwould have to do some kind of dy
to ask the government how dynamic itwould be to understand the need for a
team to look. I don't know about laws and so on,

(42:45):
but if there should be a place, it should be the figure, it
should be, it shouldn' tbe something that we, of necessity go
and ask for, but it wouldhave to be something as part of the
package. You understand exactly. Forme one has to conceive from that place,
because we are all one no,no, well, no and now

(43:06):
well don' t notice it walksto that side, no and now look
you want. There is a groupthat specializes in this taking the data,
but referring to where, it hasto be clear that yes, yes,
because we do not give the newsand go out there and with the mind,
as we say, out there inBolivia, thinking forty things at the

(43:27):
same time, at the best ofthe cases, only forty attacks on everything
leaves us in a place where realitybecomes very cruel to us, attacks against
us. And then we' rein this dynamic where, for example,
I can talk to you or Ican talk to Bethlehem, because we'
re living it and maybe you canunderstand me a little more. But I

(43:50):
go out with this news to confrontsomeone who is not living a little bit
of what you are living and inhis good voice, will and good deed,
neither does he help me, becausethen he asks me not to worry.
In his good will he tells youthe stupidest or cruelest thing you can

(44:12):
hear in your life. Exactly becausethere' s nothing crueler than grasping and
minimizing each other' s pain.Don' t worry to see it open
like a chicken how you want menot to worry exactly is one you didn
' t want to laugh at me, but what a melogy. But it

(44:37):
is or it is not. No, I don' t mean that.
I' m asking myself what todo. I don' t care,
they' re gonna open it likea chicken. He' s 14 days
old, they' re gonna openhim up like a chicken split in the
middle, but what do I do? I' m going to have a
beer. You' re telling mean idiot and on top of that he
' s your son. That's the hard thing you say I care

(45:00):
a little about the person who's going through this exact thing, but
he' s your son, that' s blood from your blood, yours
is my world exactly. It's very difficult. It' s very
difficult. I had an experience witha hospital too that they told me I
needed heart and lung transplant and theydid all the studies that that was horrible,

(45:23):
everything they had to do to you. That was me, but,
well, well, it was aterrible experience. After you tell me that
and that well, they' llcall you back. The doctor called me
I' m calling to tell youyou don' t qualify God. It

(45:44):
was all for me, that wasthat now at the May clinic every time
they tell me about after planting andI don' t. No, no,
no, no, no, no, I don' t want anything.
One. It' s not therock that hits the or, as
we say in my country, it' s very difficult. Of course,
and apart from one, he needsyou to respect one' s feelings.

(46:04):
You' re a person who's going through all this that validates it.
I mean, I' m distressedto give rise to my anguish.
The thing is, well, sometimespeople can' t cope with each other
' s anguish. That' swhy it seems to me, and not
to promote, because I' ma psychologist, but it seems to me
that well, psychologists are trained forthat, to deal with each other'
s anguish. That' s theplace we have and from there we can

(46:29):
help a lot. We asked you. India has some page, some guy
bom where people can communicate with you, if they have doubts, if they
want to know more about psychoprophylazzis orabout clear. I have a page that
' s where, I understand it' s called w better with therapy.

(46:52):
They can' t get in touchwith me when he felt I' m
talking to you for me and because, although he' s going to say
it, we' re also veryhappy to have found you and to have
given us your time and the opportunityto listen to you and to know you
as well as the situation of matiasas your job. We know that the

(47:13):
mothers who are listening to us,please, she already gave her page there,
can go in there and look formore information, because we know that,
within this we are living, weneed to give help to our children
and so do we, because ifwe get together well, it will make
it a little difficult to keep ourbabies well to me. Once I was
told you had to be fine forMatthias. I remember that I was very

(47:37):
bad because I felt that in lifeI wasn' t being very unfair about
everything and I said no, Ihave to be fine for me, I
don' t have to be okayfor Matias. If I' m okay
with me, I' m gonnabe okay with Matias. And I think
that' s important because this,to see us as families, because it
' s not that isolated person,it' s not the campaign mom,

(48:00):
because to see who said go along, it was easy to give up,
take your son. I understand thatputting the body. I always say the
hardest part. He' s takingit to Mati. I have no doubt,
but when I' m accompanying himand I' m holding his hand
while they' re giving him upand he starts bending his whole body.
I don' t know how tobe at that moment, but I'

(48:24):
m then accompanying It' s noteasy and it seems to me that it
is also necessary to be able toaccompany from a place of love and strength.
And one can accompany one from aplace of love and strength if one
also does not know one and goesthrough this one that is also happening to
one, because it is also happeningto you from another place, but it

(48:45):
is also happening to us exactly.Okay. Girls, I want to thank
you a lot for having me onthe show and for allowing me to tell
the story of matimia growing up tohelp get to a person I already feel
more than happy and be much more, much better. Let' s hope
so. Yes, a pleasure Thankyou. Thus this episode of warriors of

(49:08):
the Heart ends. Thank you forlistening to us today. If you have
enjoyed this episode, please leave areview of our podcast on our websidew Hearts
United Club or and remember friends nevergive up. Thank you again for joining

(49:28):
us this week. We hope youhave been inspired and empowered to become an
advocate of the community of congenital heartdefects that are of the Heart, with
your hosts Belén Blancton, Jenneferking,Gina and Marta Montero. It is produced
monthly and can be heard wherever youhave access to Pardcast. The new episodes

(49:52):
are broadcast on the second Saturday ofthe month

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