Supporting the death of a child

When Yenny Medrano was pregnant, Freddy, her husband, painted a painting in which astronaut dinosaurs appear. These were precisely two adult dinosaurs and a child, who were wearing an astronaut helmet. At the time it was nothing more than a painting, a bit strange as she describes it today, but now that eight years have passed, it is believed that this painting was premonitory.

Gaspar, the baby on the way, was born in 2015. He was premature and two days after his birth he had a hemorrhagic heart attack that left him with many consequences: cerebral palsy, refractory epilepsy, epileptic encephalopathy, among others. So many conditions which did not allow him to have a “normal” life. His parents did everything they could to make sure he was well, which included long periods of hospitalization and multiple invasive tests and treatments. Despite this, at the beginning of this year his neurological condition worsened. He had a long and difficult stay in the intensive care unit of Calvo Mackenna Hospital, from where he was referred House of light.

Casa de Luz is an assisted retirement home which opened its doors in September 2022. Its executive director, Mónica Gana Arteaga, defines it as the first pediatric hospice in South America . A bright space located in the municipality of Independencia which has nine mini-apartments where families arrive with diagnoses that threaten and/or limit the lives of their children. There are pediatric palliative care specialists who accompany, support, educate and train families in care throughout the illness process, including end of life and bereavement.

Yenni, her husband Freddy and their son Gaspar stayed there for six months. “I am from Lampa and it often happened to me that I had to leave this distant town for Santiago, at night, with my son convulsing in the car. These were very difficult times. That’s why, when they offered me to be at Casa de Luz, I accepted without even knowing everything that would happen in this place,” he says.

They went there with a care plan; a temporary stay to reduce the caregiver’s stress load, but they began to notice changes in their son. “He spoke very little, but he knew how to say “no”, with intention. And every time we left the house to go to the hospital, he would tell me “no.” When we started reading it, we understood that he didn’t want more invasive treatments or hospitalizations, and we saw that the best thing we could do was give him this: to be in a beautiful place, where he felt good, happy,” he said.

This was the turning point. “We decided not to hospitalize him anymore. This is how the anticipated care plan began, which means that we prepared in advance for his death with the hospital and the Casa de Luz team. From then on, if something bad happened, treatments would be non-invasive measures, out of respect for him. Simply put, we started working on the end of Gaspar’s life.

When Yenni remembers those days and the emotions she experienced, she thinks that if she had not been to Casa de Luz and returned home with her son, she would probably have hospitalized him in new. “I know a lot of mothers who go out of their way to try to help their children improve. I was like that too. I said ‘I’m going to hospitalize him’, ‘I’m going to do everything’, ‘if we have to intubate him, he will be intubated’, but being here, I was able to see my son in another place. path. Gaspar died three weeks ago, and in his last six months he was finally a happy and free child. We stopped doing all the things he didn’t like like the brace or the walker, if he wanted to crawl he did it all over the house. “He was a free soul here,” he said.

And – he adds – the only thing that was proposed was dignity. “I decided that my son’s last period was going to be dignified, that he was going to be happy, that we were going to be happy and in this house I found all that. The confinement they gave us here allowed us to abandon this so-called selfishness, but deep down, it is a selfishness that we parents have, of always wanting to have our children by our side. Maybe at another point in my life I would have hospitalized him and put him on a ventilator, but I didn’t want that quality of life for him because he didn’t deserve it.

The child lives until the minute he dies, and the minute he dies is one, everything before that is pure life.

And it was not an easy decision because the messages that society conveys are contrary: death is not conceived as one stage among others in the cycle of life, it is avoided. “In our culture, we talk very little about death. With the pandemic, a space has opened up to talk more about death and take charge of the way people die in Chile, but it remains invisible. And so resources are scarce. The training of medical professionals is such that they save lives and there is also the typical slogan that “there is nothing that can be done”. But I learned that everything must be done. The child lives until the minute he dies, and the minute he dies is one, everything before that is pure life. And what we saw is that when we look at things from that point of view, we can do a lot of things as a family, prepare ourselves, create legacies. You can have valuable conversations that will support subsequent grieving,” explains Mónica Gana.

One day, sitting at Casa Luz and looking at their son Gaspar, Yenny and Pablo remembered the painting of the astronaut. The idea appeared there that Gaspar was that astronaut and he had come to this world on a journey, a mission that had a certain deadline.

This is how they began to prepare for their return journey. “It was the right decision and it was the greatest thing we could do,” Yenni says. And it was literal. One day, the three of them even got dressed up and had a photo shoot. “It was very protective for us to do this session because we gave meaning to his journey. In fact, on the day he died, we were building a rocket with Caracola – a company that works through art to support people at the end of life – for his trip. And it was nice because everyone who was with him wrote him something. And this rocket accompanied him,” says Yenni.

“The resignification of death that this place gives is beautiful, because our son is gone and we have never been alone. The little girls made sure he was comfortable without pain, we played his music, we sang for him, we did his choreography. It was a very cathartic moment. It was like giving birth again. It was also very sad, because the death of a child is the saddest thing that can happen in life, but it was also beautiful because we were not alone, and because we were able to say goodbye in a very beautiful way. .

Gaspar came to take us around the world. It completely changed me. Perhaps at some point I will also dedicate myself to supporting families who are going through a similar process. So that your children’s journey also becomes a journey and not a farewell. And that’s it We need to talk about death, not doing so means that families, mothers, caregivers experience these grieving processes very alone, without space to express their emotions and this is more painful. As it is still a taboo subject, people think that when we decide to prepare for the death of a loved one, we give up, but that’s not all; It is an act of love and courage. Especially when it comes to your son,” he concludes.