In 2022 in Argentina, 40 organ donors were under 18 years old.
In 2023 the number rose to 45, and there have been nine so far this year.
On the Incucai list today
there are 166 pediatric patients
waiting for
a transplant as the only hope
to save their lives.
And 98 kids, 59%, are waiting for a kidney.
The Justina Law, which as of 2018 established that all people are donors unless they have expressed otherwise, caused opposition to donating to
drop from 40% in 2017 to 13% last year
.
But the 2019 record, with 20 donors per million inhabitants, has still not recovered since the pandemic, and the donation rate in 2023 reached 17.5.
The regulations
do not cover potential donors under 18
, for whom family certification is still required for them to be donors.
Although last year they exceeded 10% among all transplants, with 331 transplanted,
pediatric patients still represent 2.5% of the list
.
Clarín
learned about the struggle of the brothers Miguel (15) and Antonio (13), now teenagers.
Due to
a congenital disease with no cure
, when they were children each received the kidney of one of his parents.
Miguel did not do well at all with his mother's and, with no other compatible relatives (even his mother's cousins were tested without success), he
has been on the pediatric kidney list for more than a year
.
He has fewer points to receive it (that's the system, it's not a closed list), because he will be the second kidney.
Without the company of his younger brother, who no longer needed treatment and was able to return to double schooling, Miguel, 15, returned to the life routine he knew when he was seven: doing dialysis every other day, for five hours.
From that chair at the Italian Hospital he is part of something bigger than his own story (and that of his little brother).
Of a community
waiting
.
“The moment is very hard.
I have two sons.
One needs an urgent transplant again, and the other, who did not reject the one my husband donated, will need it again in a few years, because
the organ has a useful life
,” says his mother, Agustina Zenarruza. .
For almost two years, Miguel has been dialyzed every other day, for five hours.
Photo Marcelo Carroll
"Whether or not to give consent for the donation of our children's organs
was a conversation that we never had at home.
Until we received the diagnosis that they had the disease. When you have to be on the other side,
you realize "the importance of that prior conversation
. On the side of the family of a possible donor, their son or daughter, it is a very difficult situation to make a decision of this nature.
It has to be decided already
," he emphasizes.
One day Agustina, her husband and their two children, who are from San Isidro, were resting in Rauch.
Miguel - "who had been given the Sarmiento medal in first grade, because he never missed school. He didn't have even an earache" -
woke up with a swollen face
.
The mother was not worried.
“
Something he ate
.”
“
A bug that bit him
.”
The next day, my legs were swollen.
A call to the pediatrician and a visit to a small guard in that city.
One more morning and her son's swelling took away all the tranquility of that country house.
We had to return to the City.
“We went straight to the Trinidad of Palermo.
My husband stayed with my other son in the car, with beacons, thinking that they were going to give him an antihistamine for his allergies.
They began to do studies and there they saw kidney failure.
They told me '
Tell your husband to park
,'” he recalls.
A transfer to the German Hospital, another to the Austral de Pilar, and a diagnosis that today, 8 years after the first biopsy,
still
costs
.
She and her husband are healthy carriers of a recessive gene, which becomes dominant and develops a very serious kidney disease in their offspring.
Nephronophthisis
.
“When they discovered that it was a genetic issue, we did the study on my youngest son, five years old at the time, who still did not have any symptoms.
“Antonio had the same disease, even more advanced than Miguel
.”
Without effective treatment, the only way, for the two children,
was kidney transplant
.
All four in that family have the same blood factor.
Great news.
For compatibility, Agustina donated a kidney to the oldest and her husband, to the youngest.
“At the beginning Miguel began to have some manifestations of rejection.
They did a lot of treatments (from drug changes to plasmapheresis).
He couldn't and finally
he ended up losing his kidney three years after the transplant
.”
Before that, at the end of 2018, the two were dialyzed together in the Italiano's hemodialysis room.
In July 2022, Miguel had to return to his chair.
Only.
The teen now has a fistula in his arm (created by joining an artery and vein under the skin), to "connect."
A verb that is commonly used among these patients.
In Argentina there are four large pediatric hemodialysis centers.
In the Italiano, in the Garrahan, in the Gutiérrez and in the Austral Hospital.
So in those rooms - often set with superheroes or
rose gold
balloons - the atmosphere, literally, is that of a community.
Although the realities are very diverse.
At Miguel's there are three shifts, with five patients at a time.
The majority are on the Incucai waiting list.
The rest have another illness, such as cancer, that limits the immediate possibilities of entering into that wait.
Miguel finished entering the list (because the process is long) in October of last year.
There are mothers, fathers, grandparents and even young siblings caring for some of these pediatric patients.
They are all part of the same microclimate, united in this wait.
Agustina, for example, had the highest position in a multinational company that never let go of her hand and allowed her to
stop being a manager and become an advisor
.
From one day to the next, this absolutely
corporate
mother began to get up at five in the morning and navigate the traffic on the Panamericana, but to spend 25 hours a week being part of this community.
He doesn't complain.
“Other organs would not have the resource of dialysis to prolong life.
“Like what happened to Justina (the law's girl).”
In addition to the clear risk to life and chronic anemia, Miguel, without the kidney he is waiting for, does not grow.
Any severe kidney failure affects development at such early ages. “Whatever doesn't grow now is not compensated for later.
Miguel today is a 'baby
' teenager," he describes. Antonio is growing up.
During this wait, an empty chair could be anything from a shift change to a patient who did not respond to treatment.
If someone is missing,
you think the worst.
But it can be the best
.
Since his son returned to that room, two girls and one boy received the cadaveric organs they were waiting for.
“
It's really exciting.
You spend a lot of time in there.
You share everything.
Like the story of Lázaro, 7 or 8 years old, who had had cancer the year after he was born.
Since they operated on him and removed almost his entire abdomen, they did not know if he would have space to place the organ.
From then until a month ago, he was in the room.
One day we arrived and he was not there.
There were balloons and flowers on the couch.
The kidney had arrived
,” says Agustina, who smiles and also cries.
In his personal tragedy, he talks about
luck
.
"I'm lucky.
An hour of travel and we return home.
Lázaro's mother is from Río Colorado.
She had to leave the other child with her father in Río Negro and
settle in a studio apartment near Italiano for seven years
.
He also doesn't forget to talk about Tomi.
“It moves you to see a two-year-old child connected to a machine,” she describes, as if his reality were less harsh.
There is also the boy from San Juan who has a story of uprooting similar to that of Lázaro, and Ángel, with a genetic disease and a mother who
waits for him to finish his dialysis and connects with her
.
Incucai gives families a password to enter the National Procurement and Transplant Information System of the Argentine Republic (SINTRA).
They can see what procedure their children are undergoing and, eventually, why they were ruled out for an available organ.
In the case of pediatric patients, they are very selective.
They look for the best organ for a long life expectancy.
“We had a normal life.
This happens to you and you start to see life from another place.
As a mother, I did not consider that my children could be potential donors.
Today I cannot imagine that they are not
,” says Agustina.
A waiting mother.
How they seek to facilitate the procurement of organs
From Incucai they tell
Clarín
that they have just begun to “audit the process and results indicators” of the first year of implementation of the Procurar Program.
But they anticipate that "there are hospitals that since the signing of the agreement (to make organ procurement easier) have achieved
a greater number of donors than in previous years
."
In this first stage, national, provincial and municipal hospitals with the potential to generate organ and tissue donors were selected, they say, and "all specific training and investment projects were carried out" to ensure that each one acquired its operational autonomy: the physical space, equipment and human resources.
"A total evaluation of results cannot yet be carried out, but a greater number of donors has been obtained than in previous years, as in the case of the Emergency Hospital (Córdoba), the Eva Perón de Merlo Municipal Hospital (Buenos Aires), the Julio C. Perrando Hospital (Chaco)", they detail.
The pediatric kidney waiting list
In the case of kidney transplant - where size, weight or rib cage does not matter, and immunological compatibility has the last word -
the priority of pediatric patients increases
.
For a donor under 18, the kidneys are first distributed to the pediatric waiting list and only if they are not assigned to a child or adolescent, are they distributed to the rest of the list.
Transplantation does not cure kidney failure
.
He treats her.
The life expectancy of pediatric patients is long, and it is longer than the expected survival time of a transplanted kidney.
So, as they explained to Miguel and Antonio's parents when they heard the diagnosis, throughout the lives of these young recipients the need for more frequent medical check-ups and, most likely,
new dialysis and a new transplant will
return .