By Matteo Lessi
Elvira Parravicini is 55 years old, originally from Monza, and a neonatologist. She has been in the United States for the past 15 years (since 2006 at Columbia University in New York, where she is part of a group of doctors working with prenatal diagnosis) and has established something unique in the world: the first hospice for premature babies affected by lethal syndromes or anomalies who in 99% of the cases prevent their survival.
The text that we publish is the speech she gave on the occasion of the Enzo Piccinini prize awarded to her in Modena in October 2011 and it was after listening to her on that occasion that we decided to invite her to the Meeting so that she could talk about her story and her work. In Modena, Dr. Parravicini talked about the genesis of the hospice and its staff, presenting some case through which she explained what it means to be near newborns, their siblings and parents.
“I always have an experience of beauty working with little patients between life and death,” she said, “whether the resuscitation succeeds in saving the life, or I have to face the extreme human limit that is death, because there is a meaning even there.” “There is always something to do” is Elvira’s motto even in front of the most desperate case: “the length of their life cannot be foreseen with certainty so our responsibility as doctors is to serve their life, short or long that it be.”
To us, this is a clear example of what it means to look at man and his infinite nature. We publish here the final part of Elvira’s intervention that will be published by the Piccinini Foundation (www.fondazionepiccinini.org). Her testimony will be one of the appointments of the 2012 Meeting.
One thing that I have learned in about thirty years of medical profession is that reality is bigger than what we can imagine or foretell. Therefore, we need to be extremely attentive to the clinical signs through which the patient speaks to us: life is given, and life has its own duration, not fixed by the person, his parents or relatives and let alone the doctor.
So, how can be certain of serving a patient’s course of life without artificially shortening or prolonging his life? I think it is simple: first of all we need to be loyal with the reality in front of us, reality speaks to us, it is objective, and talks to us precisely through the signs that the patience is giving us. All we are asked is a position of attention and affection for the patient. The reason for the comfort care resides in the fact that, even when we know that the patient cannot be cured, our medical and nursing treatment can certainly better the quality of these newborns’ brief existence and this does not have be underestimated because every patient, even if incurable, is bearer of an unconditional value.
We know very well that even with all our medical knowledge we cannot eliminate the drama of a terrible injustice, that is, that a newborn baby had such a brief life. However, we offer this comfort care program as a humble attempt of taking care of the unique and complex needs of these babies and their families. (…)
In the end, however, all these simple gestures and attentions obviously cannot fill the abyss of the drama that the family is living. Because it is not with gentleness and with all these gestures that we can fill this abyss; yet, it is a way of being with them. We know that when a person suffers he has to have someone by his side so all these people are around really for being with the family, with us and with the nurses. (…)
At the end of this speech I would like to stress that there is an aspect of beauty in my work in the neonatal hospice. For me the apex of this beauty is the example you have previously heard in the video: being with those parents who had the twin girls (she is referring to the case of two conjoined twins, ndr).
And I wonder about this every time because for us it is a beautiful thing. Another thing that really strikes me is that, when I am with the parents, they are always full of gratitude: this is really strange for me because being a doctor, I should be able to cure their children and in that case the gratitude would be deserved.
So I always ask myself: why are these parents thanking me? The answer came to me a few years ago from the parents of a baby girl who was with us eight days. Once the baby died, we talked and the parents thanked me “because our baby had a very brief life but a very intense one, full of love from us, from the family, but also from your staff” and then they particularly thanked me because (and perhaps you have heard this also in the video) the hospice allowed them to be mother and father with their dying baby, something that would be humanly impossible otherwise.
By Matteo Lessi