Since the beginning of my medical studies I have had an attraction for the care of babies. Because? It is that age of life where the promise is greatest, because the day we are born we have all of life ahead of us; it is the biggest opening point, because from there anything can happen, there is a promise that awaits us. And it’s also the biggest addictive point of life. We need everything. So I studied medicine and became a neonatologist.
With these feelings in my heart, I have always tried to “Save the life” of children that I was taking care of. When I was faced with patients who could not heal, I said to myself: I tried, but there was nothing to be done. But I still had a bad taste in my mouth.
So at a certain point I had to ask myself this question: but what to do when a newborn is born too early to be able to save it? or do you have a disease that medicine cannot cure? I understood that I could not and did not want to say “there is nothing more to do”. I looked at two possible positions. One, when doctors continue to aggressively treat the patient even though they know very well that he will not make it. So the patient dies anyway, but he is made to suffer until the end.
The other position is when doctors decide that a certain life no longer has value, is not worth living, or no longer has a purpose, and they decide that life ends there, very often shortening it, perhaps denying basic nutrition. or even using drugs.
These two positions did not convince me, because they do not consider that life is given. We have not decided our date of birth or even the very fact of being alive at this moment, so we cannot decide when our life ends. Nor that of others. There is only one alternative: instead of deciding, follow life, the mystery of life. I understood that I wanted and could follow the life of these children respecting the fact that their life is given, so the criterion of my medical treatment is, if medicine cannot save them, at least they can live and enjoy their natural life.
IS a position that convinced me because it respects the nature of things and people. It is also adventurous, and even dramatic, it is about following the patient in his destiny. We know where we start from but we don’t know where we arrive; the patient leads, even when he is a newborn. And you can never go wrong. And so the adventure began about fifteen years ago.
I started simply following mothers who during pregnancy had been diagnosed with their baby’s disease that cannot be cured by medicine. I followed them during pregnancy by offering the option of comfort care for their babies, I tried to be with them at birth and then their babies became my patients. I didn’t have any pre-established guidelines. What I had very clear was that I wanted to offer care solutions that respected the normal course of life, and that would comfort the child and his family. I knew what I wanted to do, my resource was my time and my professional experience and then the resources in terms of personnel and financial came.
Currently my program is an integral part of Columbia University Medical Center, but it is financially independent, which means that whoever works in my program is my decision. This is very important because our program is special. We offer presence for the family in what we call the “Perinatal Journey“, That is, continuous care for the family from the moment of diagnosis until delivery, postnatal care of the child and then we follow the families perhaps for years after the child has died. Also, we feed these babies, because we want these babies to enjoy their short life, and nurturing is one of the few joys for a newborn. Furthermore, in this way we respect the natural length of life.
Where do we want to go? We would like this approach to be practiced all over the world, for all families with children with these very serious problems. For this we have launched on education. In all these years we have organized courses in perinatal palliative medicine for doctors and nurses at national and international level. Even Covid cannot stop us, in fact we are working on the launch of a permanent course via video, accredited for the education of doctors and nurses.
These children, with their short but precious lives, have taught me two great things. One, that I can pursue the promise of being able to cure my patients while respecting the mystery of their life. Two, that everything is given, including the people who came to work with me following the charm of this job and the funding to pay their salaries.
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