Making sense of a short life

Accompanying newborn babies

Confronting death; and the most unbearable death of all, that of a child. When dealing with the mystery of evil in its most scandalous form, and innocent pain, while already knowing that you will not be able to achieve what you chose to be a doctor for in primis, namely to save a life.

This is what Elvira Parravicini, a neonatologist and associate professor at Columbia University Medical Center, has been doing since 2008. In this time, she has invented the Neonatal Comfort Care Program, an interdisciplinary programme of care and treatment to accompany the parents and their babies who are born with a short life expectancy.

The idea of creating a hospice, a place of care, for babies who are born with a brief life expectancy dates back to 1997. The first Perinatal Hospice was set up in the United States by four gynecologists; however, the focus of that first experiment was on pregnancy and birth. “There was almost nothing”, Parravicini tells us, “about what to do with the baby once it is born. Someone who is born without kidneys or without a brain may live only a few hours, but in other cases some babies may live fifteen days, a month or a few years; it is always a limited life, but we do not know how long it will actually be. The insight, from which the Neonatal Comfort Care Program was born, stems from this gap. “I asked myself: what form can the medical treatment of a baby take who may only have a life of a few minutes, days, months at the most?” Before then, the practice was to do nothing, not even to feed these babies, so that they would die as soon as possible. In fact, says Parravicini, they lived only a few days at most. We have reversed this practice. “For me, taking care of these children means holding them in my arms, feeding them, stroking them, giving them medicine so that they do not suffer, and respect their life, even if it is short”. This change in approach all started when she met a woman, which she recounts as following.

 “One day, at one of the regular hospital meetings, we talked about a pregnant woman, and whose baby had been diagnosed with a very serious illness. Yet the woman wanted to continue the pregnancy. My colleagues were puzzled. I do not have a background in palliative care, I am a neonatologist, but I felt involved and wanted to meet her”. The woman was determined to carry the pregnancy to term. “So I told her: it’s OK, I’ll follow you”. So, she took care of the woman and the baby.

After this experience, she started to deal with the problem, outlining a set of guidelines to help children and their parents in similar cases. Both the baby and parents? Yes. “Because if the child is well, the parents are well; and vice versa”. Thus, the Neonatal Comfort Care Program, which is a combination of care, medicine, but also hugs, caresses and psychological therapy, was founded.

Does sustaining the life of a baby who is destined to die risk increasing the parents' pain, we ask. “Many people ask me that” she replies. “And, as a doctor, I respond that this is not the case. There are hundreds of studies that show that a woman who has had an abortion, even in the third month of pregnancy, experiences a wound that she will carry for the rest of her life. According to a great many studies, grieving is done much better when the woman is given the opportunity to see her child. It does more harm not see the child than to see him or her and accompany them to the end. Not that the pain is any less, for “It remains. But it is a way of respecting fatherhood and motherhood, which are still there because a woman feels like a mother as soon as she is told that she is expecting a child”.

Working with children destined to die. How do you do it?  Doesn't it make you want to give it all up?  Elvira Parravicini responds, “I work as a neonatologist. My job, first and foremost, is to save children. In addition, I run this programme. How do you not fall apart? “We don’t decide to come into the world. I did not decide it; these children do not decide it. It is not up to us to decide when life begins and when it ends. Of course, it is a painful experience. Especially for the parents, but also for me. It is an experience of pain, but in the recognition of the mystery of life. This unexpectedly produces peace. There is no gloom in Parravicini’s voice. There is no shade of sadness in her face or in that of her team, of them she shows us in a photo. “And then there is a positive aspect. When an adult dies, they are aware of what they are leaving behind. These children, on the other hand, have no idea. I always tell the parents: “You will suffer, but these children are happy to be held, to be caressed, not to suffer, they have no idea what is happening. They will have a very short, but beautiful life”. The pain, the rebellion, is in adults. Moreover, it is different in women and men. “Mothers tend to cry. Men always want to act. The mother wants to hold the child; the father asks what he can do, anything”.

Another special feature of the programme devised by Parravicini is the fact that it is interdisciplinary, i.e. it makes use of different professionals, be they doctors, psychologists, or social workers.  It starts with the mother's pregnancy, continues with the birth and life of the child and continues after the child's death, with assistance to the parents that lasts for years. The team consists only of women, and Elvira Parravicini, is a nurse, a social worker and a gynecologist. “It did not come about on purpose, but I have to say that I'm happy that we are all women. I don't know why, but women have an extra gear when it comes to dealing with pain and death”. The Neonatal Comfort Care Program started in 2008, and since then it has grown and is setting the standard all over the world. There is a similar experience in Italy, at the Sant’Orsola hospital in Bologna, where neonatologist Chiara Locatelli is following Parravicini’s programme.

by Elisa Calessi