Hugo, story of a heart

• PEDRO SIMÓN

  Madrid

• PHOTOS: ÁNGEL NAVARRETE Y JOSÉ AYMÁ

Monday, September 30, 2019 - 01:27

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The operating room is a space halfway between a Formula 1 box, a Rembrandt box and a gemstone workshop with its carvers working in silence.

In the middle of everything - under the light of the spotlights; surrounded by 12 surgeons, perfusionists, anesthetists and nurses; as if it were an explosive that had to be handled with great care - the chest open in the channel of a 15-month-old boy.

We only see the space occupied by the absence.

Surgeons can only see their eyes behind the masks.

The looks: here are images that could knock the most tanned layman.

It is not the image of the heart just removed. It is the image of the heart that has just been removed and continues to beat separately from the body , for several minutes, inside a metallic container with serum.

The diseased organ is large, flaccid and dark. The organ they are going to put next is smaller, clear and compact. In the window of a food market, no mortal would doubt which one to choose.

The child they are transplanting is the same age as the son of one of the surgeons. The one who will warn us over time ...

-This is the decisive moment ... If in 20 seconds the new heart is not beating, we are in shit .

And we mentally count in the stillness of the operating room.

One two...

His name is Hugo Guedes Granado, he is 15 months old, has been hospitalized in La Paz for four months, his heart works at 30% and he suffers from severe dilated cardiomyopathy : the disproportionate size organ beats without space in its thoracic cage.

Three four...

The boy arrived in Madrid on April 12 in a war movie scene. In a helicopter that took seven hours to land in La Paz and flew 700 meters high, because higher interference was generated in the medicalized support. On the way he had several cardiac stops. He was sedated and sent urgently from the Island Hospital of Las Palmas because in his native Gran Canaria he was going to die.

Five six...

In his hospital journey he has had several fades and incomes in the ICU, he has taken up roads, he has lost plantmates who did not resist as much as he did and, like everyone else, he has taken hold of what he could: in his case, he lives Embraced a rubber cow.

Seven eight...

Hugo has no idea. And there is no need for it. Do not know the reason for your stay. Do not know the reason for the restraints in Intensive Care. He does not know that in these months of waiting, his father has been fired by his boss taking advantage of what happened and that mom has fainted several times in fear. Hugo does not know how to count to three.

Nine ten...

After 132 fair days waiting, after three members of the medical team have boarded a plane for several hours to go find the heart of another child who has just died, after 12 people have struggled with the organ, after all, we say, we reach 20 seconds in which we will know if we are in the shit or not.

Everyone looks Some close our eyes.

Eleven...

We have reached the second number 11. And Hugo's new heart is not encouraged to beat.

(...)

The first time they saw him move was on the ultrasound of the pregnancy. The two remember perfectly how that lentil throbbed in his chest.

Álex Guedes Arbelo (28 years old) and Deiva Granado Artiles (31) met in the town of Vecindario 10 years ago and have lived together for eight years. Daniela was first born in 2014. Then Hugo came in 2018. A common story between a hotel service worker and a supermarket employee. Until, with 10 months, two days after having been in a water park, Hugo was done at night. It was this tunnel.

“He was supersan, ate very well, always laughed. It all started as if it were a cold. We were told that it was bronchiolitis and it seems that it improved with treatment, ”recalls Deiva.

«His father arrived at night that day. He went to bathe. The boy began to vomit and lost consciousness. I was not breathing. Then they told us: I had given him a cardiac arrest. They took it from my arms and I spent a week at the ICU in Las Palmas. When they returned it to us, they said that I would have to be medicated for life . We were a month in plant. Until, two days before discharge, he was given another crisis again. This time his liver was inflamed due to heart failure. Again to the ICU. The doctor gave us the news: the child needs a heart transplant ».

The previous paragraph reads in less than a minute, but a mother takes half an hour to tell you. To be more exact, it takes half an hour, two klínex and a coffee with cold milk.

What must have been the trance that Deiva asked only one thing for his family: to reform the house while he was in the hospital, because he could not live in it with that memory of Hugo.

If it wasn't for what happened next, Alex wouldn't have known certain things.

I wouldn't have known what a hickman is (catheter that goes to the heart); what is milrinone (medication that is administered by the previous device) and what are immunosuppressants (drugs that reduce defenses and therefore the possibility of rejection once transplanted); that even babies are given methadone to pass the monkey after the very heavy drugs involved in a transplant ; how a heart sets (have seen dozens of videos on YouTube); how nurse Macarena can love a child that is not her own.

The boy began to vomit and lost consciousness. I was not breathing. He had given him a cardiac arrest. The doctor gave us the news: the child needs a heart transplant

I wouldn't have known that you never know how strong you are - they quote Bob Marley - until "being strong is your only option." That in the prestigious Children's Cardiac Surgery service of the Hospital of La Paz, the mortality in transplants is the lowest. That the rental of the Cessna 525 plane that will go out for the organ and that will cover the system will be around 18,000 euros. That the extracorporeal circulation machine that keeps Hugo heartless comes out for 100,000. And that, fortunately, in Spanish public health two people like them pay neither one thing nor the other.

EL MUNDO has accompanied the family and Hugo for half a year with the permission of the National Transplant Organization.

To the parents the cardiologists spoke to them like a cyclist before a very long, critical and rugged stage: be patient, do not think about what you are wearing, this will be hard.

Daniela was told as an older sister but also a small one.

-Daughter, the brother has to change his heart because it does not work and put a new one.

-And where is it bought?

-That's what they have here in the hospital.

- But are they going to take a long time?

-Well, we don't know. Because there are also other children waiting for yours.

Twelve...

(...)

Hugo's sera-holder looks like an impromptu reliquary. Or better: an evergreen devotional. In all the time of hospital admission, they do not drop any of the saints that have hung.

There is a picture of the baby Jesus that Nurse Belén gave him. There is a rosary from the Vatican, another from Santa Rita and another from the Virgen del Pino. Because Deiva and Alex are believers, of course. Although here they believe above all in surgeons.

«Before I had many fears, fear of the first pregnancy, what it would be like as a father, what life I would give them ... Now those fears seem ridiculous to me. I have no fear. I have anxiety ».

The days follow one another like a slow and raw meat grinder. They started in room 21 of the Cardiac Surgery plant, then they were moved to 18, then they will be at 20. As the calendar gets fatter, parents lose weight.

They have slept in a hostel, in a seat, in a shared apartment of Menudos Corazones, never more than five hours. They don't know if it's Thursday or Sunday. They don't know if another War has erupted in the Gulf or if Espinete rules. Because there are no days of the week, no world news, no nights or mornings, no physical pain or personal need. Only Hugo, Hugo, Hugo ... The family is 2,000 kilometers away. The heart they expect, no idea.

"I have never understood my whole life as in this moment," says Alex after 10 quiet minutes. Alex, who is dejected, wears red, blue and white flip flops and puts his bare feet on the floor of the pediatric ICU waiting room, where Hugo has re-entered. «I think I've spent too much time at work, only on Saturdays I saw my children ... Before all this, I spent four days without seeing them go to bed or get up ... That is over. No more overtime, why ... ».

When they are together, they smile.

When you see them alone, they pick up the gesture.

-A coffee?

-Please.

«I don't want Deiva to see me bad, I try to make my fort with my family, I cut the call with my parents when I see that I get excited ... But yesterday I fell down in the afternoon. At the entrance of the hospital. When on a piano I heard a melody. One we put Hugo as a child. To fall asleep [The hum. Baby]. I burst. I threw myself almost two hours crying alone. Seated".

Yesterday I burst to hear a song that we put as a child. Two hours crying hours. Seated. Alone

Half a year of hospitalization between Las Palmas and Madrid goes a long way. And more if in one day the following things can happen to you: you see a child die, your son falls fulminated, they hurry into your room with the cardiac arrest car and take him away, a heart arrives, it is not for you , you sleep at the door of the ICU, you wake up dressed and in a fetal position.

Half-year...

When the PSOE won the election, Alex was robbed of a 180-euro Nike shoe in the hospital.

When Twitter first fell worldwide, the father was thrown out of work despite justifying his absence.

When Notre Dame burns, Alex sees the series The Inmate . 14 chapters Eight of them flip in one night.

-The inmate , you say?

-Yes. Like us. In hospitals you become an inmate. I have not seen the sunlight for days. And a week staying in the room.

When Gran Canaria catches fire in August, finally, what things, room number 20 will light up.

(...)

Daniela goes on roller skates down the hall of La Paz because all this is already her. He barely leaves the enclosure in which the family has been confined. With exceptions, of course. For example: the excursion to Primark. He went out with his father at ten in the morning and returned at six in the afternoon. The loot: a change for each day, some shoes and a dress with a unicorn . All that and a Hawaiian shirt for Hugo.

There is nothing wrong with the Hawaiian shirt to the supreme sparrow. Nor is Superman's body bad. Blessed unconsciousness: his parents are crushed, but the boy's biggest concern is to become an Olympic record launching pacifier.

Hugo Guedes Granado. Attempt number 1,372. New record: a meter and a half. He applauds himself. Deiva picks it up from the ground, which grew up in a large family and knows noises.

-I know what I am going to tell you sounds bad, but for my son to have a heart, another child has to die.

-Do you think so?

-And you want it. Each of us is moved by ours.

-Why have you agreed to participate in this report?

-To tell people that we have wonderful public health ... Because Hugo is going to help many. To those who do not know whether to donate. To the parents who wait. Hugo is going to help everyone and he doesn't even know it.

Once upon a time, Alex saved a life on the beach of San Agustin. The girl went into the sea. Alex says he swam a kilometer to reach it. And that she saw herself die trying to return with her: the girl had swallowed two liters of water. We do not know very well why he is telling us this. Or if.

There is no beach here. Daniela has no pool. When he arrives at the floor at night he asks the father to invent one. The father opens the tap of the bathtub and fills it to more than half.

-Alex, any request when we go for the heart? -we kidding. Or not.

Answer seriously.

-No, just thank you for listening to my feelings. When someone listens to you, you feel protected.

-Some request? Come on man...

"That you bring it as soon as possible," he dares to smile. And the plane carries fuel.

(...)

The first time we talked, they had been in La Paz for a few days. They do not know that they will be shot almost five months.

The second time we talked, they had seen a child die waiting for a heart. They do not know that they will endure the death of three.

The third time we talked, there were two children on the floor waiting for their organ. Now there are eight.

The fourth time we talked, they said that time passed very slowly. They still do not know what it is that time really stops: on the ninety-sixth day of admission they will put the lilac lips on the child soaked in sweat and take him running back to the ICU.

Every time we talked (the first, the second, the third, the rest), it was always news from Hugo. They don't know yet that Hugo will have his first teeth out here. And that he will learn to walk in the hospital room. And who will say his first words . And that one of them sounds fatal.

They dont know anything. They have no idea what is coming. Not even if it will come.

That is the bad thing.

NEXT DELIVERY

CHAPTER 2: THE TRANSPLANT

According to the criteria of The Trust Project

• Health
• Cardiology
• Childhood

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