A few days ago we explained that parents can finally accompany their children in the ICUs for as long as they want, by remaining open 24 hours a day. Some hospitals already did, but others had very restrictive schedules that made the children there spend most of the day alone.
One of these hospitals was the Hospital La Fe, in Valencia, where Esther Hairstyle, mother of Hector, has had to spend a lot of time away from her son against the will of both. One day Esther began to fight and her words eventually reached Minister Ana Mato, being the seed of what has now been achieved.
Now that what she and so many parents have fought for has been achieved, we wanted to interview her to explain a little the process that has lived and talk to us from day to day in pediatric ICUs. I recommend that you look for a moment of tranquility, a few minutes of solitude and calm and a handkerchief, because his words require it.
Hi Esther, first congratulations on what you have achieved. How do you feel now that it seems that everything will finally change?
I don't know if you're going to believe me, but after almost 3 years struggling to modify something so unfair, the first few days after the law was passed have been very difficult days, all the bad things we have come to mind lived, sleepless nights, weeping, closing doors, suffering, reprisals ... Then little by little I realized what we have achieved, the page we have written in history, my goal, that no child ever has to cry more than for his illness.
Can you tell us a little about Héctor's story?
Hector is a 3-year-old boy with a disease called Tuberous Sclerosis, severely affected and has already gone through an operating room up to 16 times in his short life, he was given a year of life and we have already borrowed 2 as I say, and We have left. A miracle child as his doctors call him. A champion, a small great person. That he never loses his smile and the desire to live, an example of life, my pride, my little piece of heart, that is Hector.
What did you feel when you saw that you couldn't be with him? Did it seem normal?
Being behind a closed door, knowing that your little one cries in despair, that he is afraid, that he does not want to be alone, that he needs you and that they only separate us a few meters and that prevent us from being together ... he just needed to shake his hand, calm him ... It's the hardest thing I've ever lived, more than his life or death operations. A little boy who is not to blame for anything, who already has enough to have his cruel disease, who have not given him the opportunity to have a normal life. They had no mercy or humanity, they broke my heart and soul ... Medical attention and that a dad or a mom shake hands with our child, when he needs us most, we are not incompatible. Love heals, I have shown it.
What did the parents of the other children admitted say? Did you get to share the same concerns?
Being in the waiting room of a pediatric ICU is something that it changes your life forever. Concerns, the parents, the same and of course unanimity in wanting to be with them all the time. That is why when the final excuse in the hospital, of not letting us spend 24 hours with our children, was that he was the only person who in one year had seemed wrong the schedule, which seemed to all other families well and for So I was not a percentage, I was so angry that I said "I will fight to the end, whatever it may be, I will go to the human rights court, where necessary, but I will never stop."
At the beginning of your path your words crossed with mine. I remember that I explained to you that your son had the right to be with you and that a good start to your fight would be to go to the Síndic de Greuges, can you tell us a little about the whole process?
A friend in the park told me about you, and that you defended that right, and I started writing to you, I will never forget your advice and how you indicated the way to go, I also remember that you saw it difficult, hahaha. But we have succeeded, and you are part of this, Armando. This has been achieved by many people. It is true that I have put on my face, but we are a small great team of many people that I have encountered along the way and that has joined this fight.
I went to the Sindic de Greuges and the truth is that, from the beginning, they turned to one hundred percent in my complaint. They didn't understand why we couldn't be with them. I know you have fought a lot, I know, so I will never be able to thank you for everything you did.
I collected signatures, the truth that behind Héctor there is a big cyber family that never stopped showing me his unconditional support, also the parents of other bad children who were always by my side.
I wrote up to the Queen, to the Minister of HealthThey even called me from the Ministry and I met with them, there in an office, I alone, Hector's mother, writing a text in which we solved each and every one of the obstacles for which they said no to that we were parents with our children in the ICU, for me absurd excuses, and nothing ... we tried to at least extend the schedule and nothing, the hospital still did not give its arm to twist.
But I noticed the support of all people and also the pain of feeling that they could not do more than they were doing, because precisely the ICU of my hospital refused, and that gave me more strength.
Tell you that this is not a criticism for my son's hospital, of which I am proud, of his doctors, of his nurses and auxiliaries and of the medical sub-direction of the Faith. If there is human quality in the world, there is the faithful reflection I say it from my heart.
I also want to take advantage, and that everyone knows, that ALCE (Association of Epilepsy of the Valencian Community) has accompanied me in this battle, always in the shade but always watching over me, and especially ASPANION (Association of Parents of Children with Cancer). In my despair, when I already thought that I could no longer, that it was a David against Goliath, I had the idea of asking all the associations of sick children that came to my mind. We are the ones in the ICU over and over again, unfortunately, and one day I received a precious letter from them, in which they joined my fight, they were the ones who did the study at the national level of 25 UCIS, in the provinces where they had delegations, and then send it to all the Spanish health councils along with my desperate letter.
That letter arrived in Madrid and Someone sent it to Minister Ana Mato. Finally someone took the side of the weak, understood us and decided to change the childhood plan at the last moment ... and well, with the result we already know.
While you continued your fight, how about the children in the ICU? I heard some example of you from a child who was just asking for yogurts because he knew that when he had finished eating his mother would leave ...
After the first stay at the ICU, it took me many nights to get back to sleep without hearing those screams. Yes, it is true that there are children in a coma, sedated ... but unfortunately there are many others who are awake. Do you know what it is to leave there and shout "Mom, don't leave" ?, "DON'T LEAVE ME", "Please, why are you leaving?"
I got to ask myself, "Is there humanity left in the world? Is it that nobody is going to side with those who need it most?" I know it will be hard for hospital workers, but haven't they thought it will be less stressful to have the children calm? Without binding? From the hand of mom or dad? It is working in all hospitals with open-door ICUs.
I imagine that you talked about this with the ICU professionals at some point, what were the arguments they used to defend that children spend a large part of the day alone?
Well, you all excuse, for example the patient's privacy ... you see, when you are in an observation room where you can spend up to 48 hours, stuck bed with bed, there is no intimacy ... what things, what if the time of the bathroom, it must be that it is very expensive to buy a stop ... and the cruelest excuse, that it would be very unfair to let the parents in when there are abandoned children who are not going to see them ... who have to watch over those children that nobody visits. It was very outrageous every time they answered me with their real excuses ... It has been hard, very hard.
We thank Esther who has dedicated her time to us and told us about her experience and her struggle, and we also thank her that she had the detail to offer us even more information about the process and about her son Hector: she has lent us the letter she wrote and that reached all the health departments of Spain and finally at the hands of Ana Mato, which you can read here, and has also sent us a letter dedicated to his son Hector that I cannot summarize in words, because it does not deserve to be summarized, but read, from beginning to end. You can read it here.
