My name is Esther, I am Héctor´s mommy.
When he has a month of life, we received the news that no parent ever wants to hear: he had a very serious disease, without a cure, and was so affected that he would not survive a year… His first year was crazy, a struggle against the clock, but we were winning battles.
Our true story begins with his first surgery, a craniotomy. The surgery was a success, we had a wonderful medical team, all went well, without sequels… and my child was admitted to the ICU. Our nightmare began here…
When we were waiting at the ICU door we are told:
– “The ICU has restricted hours”.
-“What are you saying? They are children and they are alone!”
I can not believe it, I angry and complain… “You are not going to come into, THIS IS THE RULE OF THE HOSPITAL!”.
My history in the ICU is something terrible to share. My newly operated child was fully aware, he was receiving multiple drugs but he was awake. When they let us come into, I could hear him crying from the corridor. Oh my God when I saw him!! Tubes and cables everywhere, tied, cries of hysteria and the veins of his eyes popped. I fell my world over.
I got closer to Héctor and he stopped crying, even he made me half smiles. He did not cry again a single second during the time that we were with him. I only took his hand and he felt asleep quiet. When they put us out, the eyes of terror of my son, his cries breaking my soul… It was horrible. But not only for my son, also by the cries of other children who were also aware: where was humanity?. Hector only needed my hand not to feel abandoned; to be alone do not cure but be accompanied helps the recovery. Parents and physicians are not incompatible, both of us were necessary and they would not give up. We lived with the cruelty of the illness of my child, not knowing if today was going to be the last day, fighting for survive, trying to make him the happiest person in the world… and also battling to not stay alone whenever he had to return to the ICU.
It would be very long to talk about our step-by-step battle, reality exceeds fiction, but they were three years of intense struggle in which we moved Earth and Heaven. One day, and thanks to a wonderful, my desperate letter arrived to the Minister Ana Mato and she decided to include in the Plan of Childhood and Adolescence the point in that all the Spanish Communities would humanise the pediatric ICU and them, children could be accompanied 24 hours by their father, mother or legal tutor even in testing diagnostic.
It was approved unanimously by the Council of Ministers. But even with the law in hand, they refused to denied to comply it . In addition to all the laws that they already were in breach was added this new, but we had more force that never.
Héctor was very ill and he had to return to the ICU, and we went all out. This time, we managed to open the doors of the Pediatric ICU for all children in Spain:
NO CHILD WOULD CRY NEVER MORE FOR BEING ALONE
Today, there are many Spanish PICU that are violating laws and rights of children.
I keep helping all parents who ask me for help… but this is a long way. After getting it, life was much easier for us, it was like the same I was in the ward or in PICU. He did not cry any more, I never let out his hand. The prophecy was fulfilled two months before his six birthday, but before, Héctor completed his mission.
Héctor is also written with H.
To meet you has been wonderful, thank you for your fight.