Lying on the observation table in a local clinic, in the darkness of the sonogram room, Monica Canetta heard someone utter a strange phrase.
“Incompatible with life.”
It didn’t make sense to the 32-year-old Italian immigrant, who, along with her husband, Carlo, were expecting their third child.
“He’s already alive,” she thought.
As if she – or anyone else in the room – needed proof of that, the beating of his tiny heart could be seen on the screen.
“Incompatible with life.” She would learn in due course what that strange phrase meant, at least to the healthcare professionals who were monitoring her pregnancy. After more tests, Monica and Carlo were told that their baby, Matteo, had Trisomy-18, a genetic disorder that usually doesn’t allow a baby to survive for long after birth – if he even gets that far.
Devastating news to any expectant parents, to be sure.
The healthcare professionals proceeded to offer more tests, including amniocentesis, saying that the more information they had, the more choices the Canettas would have as to how to proceed.
“I wanted to give my baby every chance modern medicine could provide,” Monica wrote in a 2021 op-ed column in USA Today. “I underestimated, however, how hard it would be to find a doctor who supported my choice.”
It was clear to her that her caregivers prioritized one particular choice – abortion.
“Not once did I hear the words I so craved: ‘Don’t worry about it. What do you want to do? I will help you,’” she wrote.
Fortunately, through her parish priest, she met Dr. Lucy Bayern-Zwirello from St. Elizabeth’s Medical Center in Boston. Her words could not have been more different from those she heard at the clinic. “Your baby is beautiful,” Dr. Bayern-Zwirello, who is Chief of Maternal-Fetal Medicine at St. Elizabeth’s, said as she conducted an ultrasound. “I am happy to accompany you. Let’s see what the baby will do.”
That didn’t change the inevitable outcome of Matteo’s life. He still had Trisomy-18. But it made a world of difference to Monica and her family’s ability to cope with the tragedy.
Bayern-Zwirello “knew we really cared about baptizing the baby before he died, so when I was at 35 weeks, she could see that the baby wasn’t growing anymore, so she realized it was time to take him out, because that way there was a chance that he’d be [born] alive, and so I got induced,” Canetta said in an interview.
“It may sound strange to think of the death of a newborn infant as beautiful, but it was,” she wrote. “Matteo died surrounded by loving family and in the care of medical staff that helped to give him the dignified death he was worthy of.”
"Just get over it"
Monica Canetta’s story is unusual because of the relative infrequency of life-limiting and life-threatening prenatal conditions. But among the minority of families who receive diagnoses as devastating as the Canettas did, a slowly but steadily increasing proportion are finding that there are alternatives to termination of pregnancy. In general, the term that covers those alternatives is perinatal palliative care.
The Vatican has put a spotlight on perinatal palliative care, or PPC. Earlier this month, the Pontifical Academy for Life hosted a webinar, “Perinatal Palliative Care. Foundation & Experiences,” featuring pioneers in the movement and leading practitioners from the United States and Europe.
Archbishop Vincenzo Paglia, president of the Pontifical Academy for Life, in introductory remarks at the December 1 webinar, said that PPC supports “the desire of mothers and families to meet their baby at birth and to celebrate its life, albeit briefly.” PPC is “committed to giving comfort to little patients, respecting their dignity as a person, without artificially shortening or prolonging their lives.”
The archbishop added: “The good news is that in a prevailing throw-away culture, there are more and more parents who ask to accompany their seriously ill child to the end.”
Dr. Byron Calhoun, professor in the Department of Obstetrics & Gynecology at West Virginia University in Charleston, told participants in the Vatican webinar that he and some of his colleagues developed the idea for perinatal hospice about 25 years ago, “basically on the idea that we had nothing to offer our patients at that time.”
Prior to that, he said, doctors would talk to patients “about just getting over this experience.”
He said that the aim of PPC is to “love these women and their families.” Terminating pregnancies that are problematic, he said, is a way to “short-circuit that ability to grieve and to have participatory grieving.” According to several studies he cited, women who aborted babies with serious anomalies suffered emotional problems down the road. In a study from the Netherlands, for example, at four months after an abortion, 50% of the women studied had post-traumatic stress.
“So this is not something people just do and then get over it,” he said. “It’s a very significant event, and as we see, it’s quite traumatic for the patients and their families. … What they found was that women who did hospice care, carrying their babies, giving birth, had less despair, less avoidance and decreased levels of depression, as did their partners, compared to women who chose to terminate their pregnancies.”
Parents and patients aren't the only beneficiaries of PPC, Calhoun added. He said that after a short time of experimentation, the practice of PPC “transformed our department of labor and delivery from a place where people felt hopeless and did not have an ability to provide care for these patients to an ability to provide compassion and loving care and provide a wonderful setting for these patients to love their children.”
Bonding
By 2019, there was enough progress developing PPC programs around the country that the American College of Obstetrics and Gynecology published an opinion saying perinatal palliative care must be one of the options to be offered to women receiving a diagnosis of fetal life-limiting diagnosis. This document was endorsed by the American Academy of Pediatrics that same year.
But what do mothers themselves think about it? Calhoun reported that studies found that mothers “don't want to see you treat their child as a problem or just as a hopeless sort of thing. They like the idea of wanting to be accepted in taking care of this child, continue their pregnancy and not be harassed about termination or early delivery. Offer them options, give a birth plan, do the things that they would like to do for their baby, the idea that you would provide unlimited care in a special place and support the family, support the mothers in their decisions and would recognize the mother and perhaps allow them to take their baby home for hospice if they needed to.”
Another pioneer in the movement, Dr. Brian Carter, professor of Pediatrics (Neonatology) in the Department of Medical Humanities & Bioethics at the University of Missouri-Kansas City School of Medicine, also addressed the webinar. He explained that PPC usually includes planning for birth, emotional and spiritual support, provision of perinatal and neonatal palliative care at the time of birth “through however long the life may last and even continuing into bereavement support.”
“The model of palliative care in the perinatal setting has grown from one that only attended to pain relief and comfort to now trying to enhance the maternal bond, being family centered and much more comprehensive,” Carter said.
Dr. Elvira Parravicini, Associate Professor of Pediatrics at Columbia University Irving Medical Center, described a PPC program she developed, saying its mission is “to honor the lives of babies with life-limiting conditions by creating a safe and loving space for bonding, attachment, comfort and joy for them and their families along the perinatal journey.”
The Neonatal Comfort Care Program at Columbia, according to Parravicini, its medical director, includes a prenatal component defined as a plan of care offered to women who elect to continue their pregnancy with a fetal diagnosis of life-limiting or life-threatening condition. The plan includes neonatal counseling and preparation of a plan of care for when the baby is born and the diagnosis is confirmed.
"The unique component includes direct medical care of the infant based on the diagnosis, prognosis and family preferences," she explained. "The plan of care can include comfort care, which is a medical and nursing care of the baby, let’s say at the end of life stage, or palliative care, which can be defined as a supportive relationship with families and their babies."
Aside from specific care for individual cases, generally, the center focuses on allowing the baby to bond with the family and "to be nice and warm, and this is achieved most of the time with skin-to-skin (contact),” she said. “We want to relieve hunger and thirst … and alleviate pain. Feeding is one of the few pleasures of babies, even when their life is short. We can feed them with a little syringe; with a bottle, if they’re able to do so, or with the help of other devices. We call on lactation consultants.”
For parents, she said, “We really support and encourage prayer with a chaplain or speaking with a psychologist.”
Growing, but not fast enough?
Ana Martin-Ancel, a neonatologist at SJD Barcelona Children's Hospital in Spain, said during the webinar that support for the family “must begin at the time of the diagnosis, because the diagnosis can have a terrible impact on the families. It comes as a shock.”
“The diagnosis generates a loss of identity, a sensation of failure and isolation,” Martin-Ancel said. “You lose the image of your child being healthy, and a lot of fears emerge: The family feels guilty. The mother wonders whether it was the medication she took or she didn’t take care of a certain lifestyle. Also the family is afraid of suffering, and at times there is also rejection of the idea of having a sick child, to see how this will have an impact with the social life of the child. A parent might not feel up to the task. So families must make difficult decisions, and these decisions must be made in a very short time.”
She said that the tiny patients “have the right to receive this kind of care and also the kind of palliative care that is offered to adults.”
Martin-Ancel added that practitioners are challenged in figuring out how and what can be done “so that these painful experiences have a positive impact on the families. How can we encourage the family to further appreciate the life and the experience lived, despite the death of the child?”
According to the website perinatalhospice.org, PPC programs are present in 46 of the 50 states and in six out of 10 provinces in Canada. Advocates hope the number will continue to increase.
So as well do women like Monica Canetta, who, were it not for someone pointing out that a perinatal palliative care center was in a hospital nearby, would have felt like she was fighting a lonely battle for the sacredness of Matteo’s life.
In the end, it comes down to being treated with dignity, whether it’s the parent or the child. In order to remind colleagues of that, Dr. Calhoun has them think about the whole thing from the patient’s point of view.
“What life can be more well-lived,” he asks, “than to have somebody love you and hold you and care for you every minute of your life, for that few minutes or few hours that you spend on earth until, as we say, you make a passage?”
