Mariella Enoc: 'The love of parents that overcomes every trial'

By Alessandro Gisotti

The daily heroism of parents, evoked by Pope Francis in the interview recently published in the daily edition of L’Osservatore Romano, is also that of the mothers and fathers who live the most painful and, in many respects, incomprehensible experience that a person — even with the support of faith — has to endure: the sickness and suffering of their child.

“Why do children suffer?”, Dostoevsky wondered, and with him, basically each one of us.

One person who meets these families every day, in their anxiety and hope, is Mariella Enoc. She has been President of Bambino Gesù, the largest paediatric hospital in Europe, since 2015.

We asked her, as she welcomed us to this place of suffering and love that “stole her heart away”, to allow us to “enter” ideally and on tiptoe the hospital wards to touch that heroic strength the Pope speaks of.

Q: In the interview the Pope granted to L’Osservatore Romano, he stressed that the way those parents face every obstacle for the good of their children is heroic. How does Mariella view the daily testimony of the parents of the children admitted to the hospital, and her mission to Bambino Gesù?

The parents show great courage, above all tenacity and love even to the point of heroism. I am thinking of the parents who come from countries where children cannot be treated and who we welcome. They come here. They don’t know the language; they don’t know the culture, nor the environment. We give them a cultural mediator to help them talk to doctors, but otherwise these people live in isolation. So they are heroes too.

Parents are heroes who can also smile, be composed. I often say to mothers: “Go to the hairdresser because your children want to see you look beautiful, serene.” And they also have the courage to do this. Of course, there are also parents who, on the other hand, cannot leave the child’s bedside, and sometimes this creates a problem for the couple and even for their healthy siblings at home. It really is a world. It is a complex world where many parents even manage to do volunteer work in the ward where a child of theirs died, and I find this exceptional.

Q: Parents have extraordinary reserves of strength for their children....

Some evenings, when I leave the hospital, I am really sorry at seeing people sitting on the ground in the courtyard.... This is why I am now working to give the hospital more dignified premises. There are parents who sleep for months on end on a bedstead next to their child’s bed.

I remember — when I was appointed — that many of the fathers slept in the car, because the mother slept by her child. Today we provide accommodation for them too. Truly, parents have great strength. So yes, in this sense we can say that they are heroes; heroes of love!

Heroes, not little saints, because they are real people who know what it means to love, who know how to look their child in the eye and rejoice as soon as the child smiles at them and encourages them, because children often encourage their parents.

Q: Is there a story, among the many, that struck you in particular, that can also be a message of hope for these parents who are experiencing the same situation?

Today, for example, 85 percent [of people] with leukaemia are cured. This is a message of hope, because in the past, when we used to hear “leukaemia”, it was taken as a death sentence. Transplants: liver, kidney and heart transplants are performed here…. How many parents give part of their liver to a child or donate a kidney to their child! This is a reason for hope because this means a possibility of life.

Then, think of all the very serious metabolic diseases. At the end of February, we will be opening the first palliative care centre, and I am very keen to call it “palliative care”, because, taking up the Pope’s Message for the World Day of the Sick, those who cannot be healed always need treatment. So, we treat them! It is not a hospice: it is a therapeutic centre where parents learn to take care of their children too, to change the peg, to check the respirator. This allows them to take them home. Then they will return, but it must be a place where they feel treated.

The terrible cases of Charlie Gard and Alfie Evans really distressed me very much. I said to myself: “Without using excessive therapy, even when children cannot recover, they can be treated”.

Q: Covid has made human relations much more difficult. How did you organize the Bambino Gesù Hospital to make the life of the parents and children there as “normal” as possible?

First of all by allowing parents to always be present. Then, for example, I must say I wanted the parents — even before Covid — to be able to be in the intensive care unit near the child, because it was terrible for me to think of the parents waiting, outside that door, for news about their child. And so, I requested that they be allowed to go into the intensive care unit. The doctors resisted a bit, but then they realized that this actually helped improve the child’s condition.

For example, when the children were hospitalized in the Polidoro branch, even when a parent was positive, but also if not positive, the parent was in the room with the child. We had the case of a 17-year-old boy with autism for whom there always had to be a nurse on duty, because to keep an autistic boy shut in a room is really complicated. However, his mother was always there too.

Q: You spoke of the heroism of the parents with children who are admitted to the Bambino Gesù Hospital. But also many of your doctors, nurses, healthcare workers are parents. What do you admire most in them?

This is a very special hospital, where there is great dedication among the doctors. Being parents, they understand suffering even better. Doctors, who on Christmas Day get up from table to go to Greece to fetch a child who has to be hospitalized or to transport a heart to be transplanted.

In this period in which the number of children who are Covid positive has increased, there have been doctors who — without being on call or on duty — spent Christmas and New Year quietly here, but without feeling like heroes. They did it naturally, spontaneously. I think this is a great feature of this hospital, of this human and scientific community.

Then there is another thing we do not boast of, that is very much felt: a spiritual whisper. Here, an atmosphere of lived spirituality, actually embodied spirituality, passes through communication, love, empathy.

Q: The Bambino Gesù Hospital is in Rome, but in recent years it has increasingly extended its horizon to intervene, in particular, in favour of children in areas of war or extreme poverty: Syria, Central Africa, Cambodia.... What is your dream for the near future regarding this commitment?

We are working on an important training project. What we can do is to pass on much of the knowledge this hospital has: the scientific research in which we invest a lot. All this is a great store of knowledge. And it cannot be ours alone. It must be imparted to others.

So, I think the most important thing is the training that we have given, often in person, now also through a multilingual online platform. Communicating even with countries where some think it is not possible to be understood. One must believe in these people, one must believe in them, otherwise they will always lag behind us.

In Syria, for example, we worked with the public hospital. Our doctors went there, at a difficult time, and taught the young doctors. You cannot imagine the satisfaction when they succeeded in performing certain procedures. This hospital was a hell of a place, but we believed in it and instead of only bringing something — medicines, machinery — we brought experience, knowledge. We didn’t get caught up in paternalism.

We are now carrying out a remote training project for healthcare personnel in Libya. These are the aspects I think are most important today. We are determined to continue to commit ourselves in this way and I think it is also a gift that the Pope is giving to the world.