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Before Death There is Life

We sat down with Elvira Parravicini, M.D., to discuss her Neonatal Comfort Care Program, a service of perinatal and neonatal palliative care which establishes plans of care for babies with life-limiting conditions.
Letizia Mariani

Elvira Parravicini, M.D., is a perinatologist and neonatologist, Director of the Neonatal Comfort Care Program, and Associate Professor of Pediatrics at Columbia University Medical Center. In 2008 she began assembling a standard plan of care for babies prenatally diagnosed with life-limiting conditions. Over time, Dr. Parravicini’s plan developed into “an innovative interdisciplinary program called the Neonatal Comfort Care Program.”

Tell me a little bit about your job and more specifically about you Neonatal Comfort Care Program. How did it come about?

The official name is Neonatal Comfort Care Program and it’s a service of perinatal and neonatal palliative care, so our team takes care of babies before and after birth. The program started in 2008. As a neonatologist I am involved in the counseling of families expecting babies with severe conditions, including life-limiting conditions. In the latter case, a baby may not live longer than a few minutes or a few hours after birth, however some of these newborns go on to live for days or weeks and there is really no standard of care for them. As a neonatologist I like to give a plan of care to parents expecting a baby with problems, I can explain the medical care we will provide in the Neonatal Intensive Care Unit (NICU) or which surgical procedure will solve the baby’s problems, but in these cases, what could I offer? Life-limiting conditions are not amenable of medical or surgical care, these babies cannot be healed, so parents are given the option to terminate the pregnancy. However, there is a significant number of parents who want to continue the pregnancy, desire to see their babies, to hold them and enjoy as much as possible their brief but precious lives. I wanted to respond to this huge need. I told myself, “I’m a physician. I should be able to develop a plan by following the baby’s needs during his or her natural life. And I should be able to address desires and expectations of their families.” My first case was a little girl with Trisomy 18 who lived for two weeks. I took care of her every day, making sure she could spend time with her family and be comfortable. It’s easy to make a baby comfortable; a baby needs to be held, warm, and fed, and if he or she has any distress, few drops of pain killer are more than enough. This little girl was held all day long by her mom and fed with breast milk that mom pumped every three hours until the day when her breathing became very light and her heart slowed down and stopped. We did not even realize the exact moment when it happened, she was so comfortable and peaceful. That was the beginning. After her, I started following other mothers and other babies and the number of families I have been following has been greatly increasing over time.

Other professionals were fascinated by this new way to treat babies with short lives and I started being helped by a number of them, but the patients grew so much that I realized that I needed to hire some more professionals. Ten years later I have a core team with a nurse, a social worker, and a program manager. The hospital welcomed us and is very happy and proud of our program, but we receive no financial support from them. Therefore, our program is running because of the generosity of donors.

Just to give you an idea, in 2008 I followed thirteen families, while in 2017, more than 100. Some babies were born in other institutions in U.S., or even internationally; for instance, I followed a family via Skype in Dubai, and a number of families in Italy.

So, is a lot of the work about talking to the families?

Definitely. These families are confronted with very bad news. It is devastating. Imagine: You discover you are having a baby, what joyful news! You’re so happy, you’ve already spoken with the rest of your family and your friends; It’s a celebration. But suddenly you learn from the obstetricians that your baby has something really bad that will make his or her life short. It’s, I would say, one of the worst news you could receive. You expect old people to die, not little babies. These families haven’t even seen their baby, so it’s very heartbreaking. These families come to us asking for help. How can they go through the pregnancy? There are so many issues. For instance, when you are pregnant and your belly starts to show, you go to work, and people ask, “When is the baby due? Is it a boy or a girl?” What do you answer when you know your baby is going to die? Or when you go grocery shopping. How many times do you see pregnant women in the checkout line and even if you don’t know them, you’ll congratulate them and ask them about the baby’s gender? It’s normal. These families need to learn how to communicate this not only with those outside the family, but even in the family: how to tell the other siblings without crushing their hearts, how to tell your own parents, or figuring out who you want to tell. There is a lot of emotional and psychological support needed, and this is more about what my team does. My main job as a doctor is preparing a plan which allows families to have a special protected time to fully enjoy motherhood and fatherhood. A baby needs to know only love and comfort. I always tell parents, “You’re going to suffer because, no matter what happens, you will lose your baby. But your baby will not know. He or she will only know love and comfort. Why? As you are pregnant, the baby inside you has no idea what is happening, they’re just happily rolling in the amniotic fluid. And they are not in pain at all. But even after they’re born, they will be held, they will be fed, they will be warm, and they won’t experience any pain. So, their life will be short but, for them, it will be a beautiful experience of love and welcoming.” Depending on the family’s background—religious, social, racial, etc.—we try to craft a plan that follows the medical and non-medical needs of each baby. Some babies are so weak that they will die during labor and delivery. Others can live for weeks or months. So, we are able to plan differently, according to each baby’s condition. We also prepare plan A and plan B for each baby, because we never know how the baby is going to react after birth. In short, we do follow the babies along their natural life.

How have your team and your patients responded to this?

I wish I could record the parents when we meet them for the first time. They come to us destroyed. Usually our consultation is scheduled a few weeks after the obstetrician’s diagnosis. When they come to us, they just say, “I wish I had met you before. You give me hope, you give me life, I can finally talk about my baby.” The parents’ response is an experience of relief in every single case. One of our mottos is, “Before death there is life.” Our entire program is focused on the fact that there is life now, when this baby is within mom, and after birth up to when he or she breathes their last. What does it matter if you live eight minutes or eight years? In both cases you want that person to be loved. The parents love this program. The experience is not easy, rather quite dramatic. Fathers especially are very worried about facing the moment of birth followed by death. They often say that the pain will be so excruciating they’d rather not face it. We really make a point to emphasize that, yes, it’s going to be excruciating pain and that’s why we will be with them, but we promise that it’s also going to be a celebration of joy and honoring life. And it does happen that way every time. Invariably, parents will send us messages afterwards thanking us for the beautiful moment of celebration of the life of their babies. They are very grateful. They send us cards year after year, perhaps with pictures of other babies born after that one, but always remembering the baby with the short life as someone very special.

Regarding our colleagues, I think they also love this program. From the point of view of the nurses, in the very beginning there was a lot of concern and lack of desire to be part of this project because it is such an unusual scenario. Traditionally when babies with a life-limiting condition are born, they are admitted to the NICU for comfort care. However, I am not sure about the “comfort” they receive because they are very often kept in an incubator until they die. Very often these babies are not fed “because they’re going to die.” There is no involvement of doctors and nurses in a real plan of action. Our proposal is to have baby/family bonding in a private space, so the busy NICU is not a proper place. Ideally these babies should be with mom and family in post-partum, however, the nurses in post-partum are used to taking care only of mothers and healthy babies. Well, we have been offering a big deal of education, and after ten years we succeeded in obtaining a significant culture change: In our institution, no baby with life-limiting condition comes to the NICU, but they all follow mom in post-partum. This setting is unique, so much so that we have families coming from very far to deliver in our hospital. Our nurses became very proud of this step forward professionally and they love our program. Doctors and even administrators also appreciate this program because, first of all, there is family satisfaction, and these babies also don’t take up beds in the NICU, so there’s no need to fight for beds or to occupy beds that could be occupied by babies who can be saved, as there’s no need for these babies to be isolated in the NICU. It’s a solution that matches many expectations on many levels. Overall, people working with me are excited about this.

Is a program like this unusual?

Yes. In the United States there are more than two hundred perinatal hospices, especially in the Midwest. These are centers where there are obstetricians who follow and support women expecting babies with life-limiting conditions. They support mothers in pregnancy and delivery, but there is really no proposal for the baby after birth. What is really special here is that our team is involved at the moment of prenatal diagnosis, during delivery welcoming the baby and seeing what medical needs the baby has, following the baby afterwards, and following the family long-term for years. What makes us different is the continuity of care which includes the care of mom, baby, and family. Our program is also very comprehensive because it addresses medical and non-medical needs of baby and family.

What has it been like for you to work on this?

My goal as a neonatologist is to save babies’ lives. That’s why I went to medical school and it has been the dream of my life. I want babies to live and have a happy life. I never thought about palliative care as something that would interest me because I want babies to live, obviously. Then, this big need came about, and I found myself challenging myself to answer this need. This kind of approach became my love because, again, I want to save babies’ lives, but to save their lives is to save whatever life they’re supposed to have. I need to stay with them, where they are, whether they have a long or a short life. If my medical knowledge and experience cannot heal their illness and make them healthy, I need to stay with them up to very last moment. It’s a very rewarding experience because I can satisfy their needs all throughout their life and also support their parents in a situation which seems impossible to face. In fact, how can you face your child dying in your arms? You need to have someone with you holding you and your baby together. From a professional point of view this innovative program is also satisfying. We invented something new that addresses a big need and we proudly travel nationally and internationally to teach other professionals. But it is also satisfying to me because it is an answer to a need that I had. It’s very fulfilling.

Are there any stories you can share?

I have tons of stories. I wish I could write them down because there are so many.

My first story is about a single mother in her early forties. This was her first pregnancy and she was thrilled to finally be a mother. However, she received bad news: The baby had no kidneys. When a baby does not develop kidneys, the lungs don’t develop properly, and this is one of the most severe life-limiting conditions. Most of these babies will die during pregnancy or a few hours after delivery. Survival is not possible, even with the use of life support. This mom was offered the option to terminate the pregnancy, but she said, “No. I want to become a mom. I am actually a mom, and this is my baby. I would like to see him, to hold him, to kiss him, and to protect his life up to the very end.” So, I met her with my team, we gave her our proposal, and made a plan. Our team became a sort of family for this single mother as we walked with her on the journey from the diagnosis to the birth. In fact, the baby made it through pregnancy and I was in the delivery room when this three-pound baby boy was born. He was very petite and very cute. She held her baby to her chest for seven hours and she really had an experience of motherhood. She was in adoration of this baby, smiling, singing, taking pictures. That moment was somehow eternal, it was everything for her. Yes, there is life before death and she was fully living her motherhood. I will always remember her for her decision to be a mother all the way to the end.

I have a second story. I like to share how some of the babies we follow surprise us. This was a little girl born with a very severe cardiac condition called single ventricle. There are potential surgeries available to keep the circulation in the body going, but in reality, the heart cannot be fixed. Some parents try surgery – called palliation surgery – but the family of my story wanted to avoid pain and suffering for their baby, thus they choose palliative care. We proposed our plan to follow the baby. She was delivered at term, a beautiful plump baby girl, she looked like the healthiest baby girl ever. This is expected, but it usually doesn’t last more than a few days or at the max, a few weeks. She went home breastfeeding and we continued to follow her with hospice support. Six months later – incredible – she kept doing fine. So, we decided to do an echocardiogram to make sure that the diagnosis was right. Obviously, you don’t want to miss anything. And indeed, the diagnosis was confirmed. However, we noticed something peculiar. Her heart had developed many little extra vessels which allowed somehow her circulation to go through the lungs. She is now three years old and she continues to be okay. I don’t know how long she will live. Obviously, her condition is life-limiting, her heart will not be able to carry on for many years. But her parents are very proud of her because, in a sense, her body took care of herself. What is unique in our program is that we follow the baby. We don’t condemn anybody to death. We follow the baby, see where the baby goes, and walk the journey with them, rejoicing for the gift of any extra day.

Lastly, I have another story. It is about Siamese twins. Their teenage parents looked like typical teens covered with tattoos. After the diagnosis was made, they were encouraged to terminate the pregnancy. They refused, however, saying simply, “These are our babies.” So, they opted to carry the babies to term. We consulted cardiologists and cardio-surgeons, but unfortunately the babies could not be operated on because they shared a single heart with severe anomalies. Furthermore, they had to be delivered prematurely by caesarian section because their mother had developed very high blood pressure. In the moments before the caesarian section was performed, I was very saddened by the atmosphere in the delivery room. Many people were commenting that the woman should have terminated the pregnancy. They lamented that the cesarean section would leave a scar that she would have all her life. There were some medical students present who were ready with their cameras to take pictures of the “rare case.” In the midst of all of these people, not one was interested in welcoming the babies. And then the children were delivered, and there they were: two beautiful little girls embracing each other, as they had been united at the chest their entire lives. The father asked me if he could hold them, and I said, absolutely yes. The babies were gasping a little bit and their heart was beating very slowly. The father reassured them, “Don't worry, daddy’s here.” I thought to myself: This boy may be just a typical teenager who probably gets bad grades in school, but he is a great father! I looked around and noticed that the atmosphere in the delivery room had changed completely. I saw tears, people were embracing the young father, and the cameras had disappeared. The people were the same, and yet they were completely changed.
It was a moment of beauty, because beauty is the splendor of truth and the truth was that they are. These babies are ― they exist ― and the only possible explanation for their existence is that someone called them to life. This is beauty and truth. The fact that everybody was changed, that everybody was moved, bears witness to this, and it is further evidence that we all share the same heart despite differing ideologies or preconceptions.

In this time of tension between the pro-choice and the pro-life movements, both sides at times seems to feel ideological. Your project, instead, seems to affirm life without being ideological.

Absolutely. We are here in order to serve families. That’s why we propose our option to families who receive a bad diagnosis during pregnancy and are open with us, but we are open to the fact that occasionally there are families who, after meeting us, decide otherwise. We propose that it is possible to be parents and hold your baby in your arms even if his or her life is very brief. This is a choice that allows one to fully experience motherhood and fatherhood. That’s why, after we offer our proposal, the vast majority of families we meet follows us. I am convinced that each mother and father has an irrevocable, original, and fundamental desire to support life and to love their babies as much as they can. That desire is always present even if people make other choices, and it’s not for me to say anything about that. Our proposal is meant to support this irrevocable desire and we are available to anyone who would like to follow our plan. Everything else is ideological and I have no interest in discussing it.

What are you most proud of?

I’m most proud of the babies because they are so abandoned to our care. They always follow us, they surprise us, they are very strong, and they make us and their families happy. Yes, I’m proud of my babies. In fact, what is unique in our program is that we always put ourselves in the babies’ shoes. While we keep in mind each family’s desires and expectations, we are about what the baby needs to feel, what the baby needs to hear, and so the program is very much baby-oriented because those are my champions.

Is there anything else?

Our program has been around for ten years. In our hospital we try to provide support to as many families as we can. Sometimes the work is overwhelming, but I wish we could advertise better to reach all families in need. That’s why we made our new website. We also understand that we can’t possibly take care of all babies in need of our help and, in reality, our vision is to spread this approach and make it available all over the world. In order to do that, as we continue to take care of patients here, we decided to greatly increase our efforts in education. We have been organizing annual workshops and boot camps at Columbia University Medical Center to teach professionals how to run a program similar to ours in their own institutions, and we are available to go to other hospitals nationally and internationally to help people start their own programs.

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