The hospital program for parents facing tragic prenatal diagnoses

Photo: Now I Lay Me Down To SleepGina Harris, pictured here while pregnant with her son David, is the executive director of Now I Lay Me Down To Sleep, a nonprofit that dispatches professional photographers to photograph infants whose lives are expected to be brief. Harris lost two sons, David Paul Harris (October 25, 2007) and Ethan Robert Harris (June 18, 2008), to fatal fetal conditions. (Photo courtesy of Now I Lay Me Down To Sleep)

Walk through the doors of the grand, sand-colored-brick facade of NewYork-Presbyterian Hospital and take the elevator up to the neutral tones of its 17th-floor hallways, and you will reach the bright oasis of an office that belongs to Dr. Elvira Parravicini. It is a small space, as nearly all New York City spaces are, but she has filled it with color and life—the thick green leaves of aloe vera plants, the soft pink of dried roses, an icon of the Madonna and child and a photo of her cradling a friend’s premature baby in her arms. On one wall hangs a photo of a dawn and one of a sunset in Northern Italy, where she grew up.

For the last 21 years, Dr. Parravicini has worked as a neonatologist—a pediatric specialist who cares for newborn babies who are seriously ill or premature—and in 2008 she founded the hospital’s Neonatal Comfort Care program. She works in the delivery room and the neonatal intensive care unit, treating sick infants just after they are born and for as long as it takes for them to recover. But many of her patients are known to her long before that.

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Perinatal hospices are offering compassionate care to children with life-limiting conditions.

Dr. Parravicini’s work often begins while her patients are in utero. For those children whose conditions are expected to be treatable, she meets with parents to develop a treatment plan. But parents of children with life-limiting conditions—a medical term used when a patient’s life is expected to be short—also seek out her advice because she can offer a plan for them, too.

Drawing on best practices in hospice and palliative care, Dr. Parravicini sits down with these parents and goes over the diagnosis and the prognosis: what the baby might look like, the length of life and a range of scenarios—the best and worst case and anything in the middle. Some may be stillborn, some may die during labor, some will live for a few hours, some for a few weeks. She asks and addresses questions like: How can we make the baby comfortable? What do you desire for the birth if we know the baby’s life will be short? How do we feed and dress the babies with certain anomalies? How do we address possible pain? The process and outcomes are different for each family, but all of them fall under the heading of perinatal hospice.

The Neonatal Comfort Care program provides compassionate perinatal hospice care to children with life-limiting conditions, before, during and after birth, and provides emotional, logistical and medical support to their parents throughout. Although the percentage of children with life-limiting conditions is small (approximately 3 percent are born with what the Centers for Disease Control and Prevention describe as birth defects, a descriptor that includes many of these conditions), they have been the focus of legislation in several states. Arkansas, Nebraska and Minnesota now require women seeking an abortion for a child with a life-limiting condition to receive information about perinatal palliative care. A similar law failed in Texas. Several studies have shown that an awareness of perinatal hospice support increases the likelihood that a pregnant mother will carry a child with a fatal fetal abnormality to term.

Although the percentage of children with life-limiting conditions is small, they have been the focus of legislation in several states.

These moves were cheered by some pro-life groups, but legislating palliative care also runs the risk of politicizing the practice. Perinatal hospice is “a choice that appeals to people along the political spectrum,” says Amy Kuebelbeck, the founder of perinatalhospice.org, an online resource for families and health professionals. “It resonates with pro-life beliefs, but it is not just a pro-life thing. It transcends the abortion debate.”

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A major concern for many parents considering perinatal hospice is pain. Dr. Parravicini says that this is typically not an issue for infants in perinatal hospice. “A baby with a life-limiting condition is very weak, but pain is rarely evident,” she says. There are pain scales to detect pain in an infant, and while the likelihood of needing pharmacological treatment is low, many painkillers are available and can be given without an IV. “We want to guarantee not only that the baby is not in pain but that this baby is comfortable,” she says.

Children in perinatal hospice most often stay with the parents, both in the hospital and, if they survive long enough, in the home, typically foregoing treatment in the NICU. Dr. Parravicini co-authored one study that, though small, showed that babies with life-limiting conditions live approximately the same amount of time whether they are in hospice or in the NICU. “Our motto is ‘before death there is life,’” she says.

Dr. Parravicini’s program also offers workshops and educational resources for professionals. In June, for the first time, the program sponsored a three-day boot camp at the hospital that offered professional accreditation to nearly 90 physicians, nurses and other professionals hailing from 19 U.S. states, Russia, Australia, Italy, England, Canada and Burundi.

 Xavier Jean Kiemde was born on Sept. 13, 2012. He lived for one hour outside of his mother’s body, but was held by his sister.
Xavier Jean Kiemde was born on Sept. 13, 2012. He lived for one hour outside of his mother’s body, during which time he was held by his sister, Marguerite. (Photo courtesy of the family)

The strong response to the conference reflects the growing interest on a global scale in the topic of perinatal hospice. The Vatican has also taken note. In May, approximately 400 people representing 70 countries gathered to discuss perinatal hospice care at a conference co-sponsored by the Vatican Dicastery for Laity, Family and Life and an Italian nonprofit. The group included Dr. Parravicini and Ms. Kuebelbeck, both of whom are Catholic, as well as bishops, laypeople and medical professionals, who discussed education, awareness and advocacy and met in a private audience with Pope Francis.

The pope’s speech to the group made headlines when he went off-script to say that performing an abortion was like hiring a “hitman.” With these comments dominating the news, little attention was paid to the rest of his address, which offered helpful context for understanding the church’s relationship to perinatal hospice. The pope stated, in part: “These are the children that the culture of rejection sometimes describes as being ‘incompatible with life.’ No human being can ever be incompatible with life, either because of their age, their state of health or the quality of their existence. Every child that presents itself in a woman’s womb is a gift that is about to change a family’s story.... This child needs to be welcomed, loved and nurtured. Always!” He said that the “practical, human and spiritual difficulties [of accompanying children with fatal fetal abnormalities] are undeniable, but it is precisely for this reason that more incisive pastoral action is urgent and necessary.”

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Just 20-odd years ago, there was little formalized care for patients who received an adverse prenatal diagnosis. “Discussion swarmed around termination versus throwing your hands up,” says Dr. Byron Calhoun, a maternal fetal medicine specialist in West Virginia who has served as a medical adviser for Priests for Life, who also attended the Vatican conference. He wanted another option for his patients, so he began to develop a series of best practices for caring for the mother and unborn child through pregnancy, birth and death and coined the term “perinatal hospice” to describe it. In 1997, he became the first person to write about the topic in a medical journal. He describes the practice as “more high-touch than high-tech,” and his motivation was simple: He hoped to “just let parents be parents and love their children. If we provide this alternative, it’s hard to argue with that,” Dr. Calhoun says. “If you believe in choices, then you have to provide a choice.”

Many advocates for perinatal hospice today are women who had to forge a path for themselves during their own time of pregnancy, loss and grief. In 1999 when Ms. Kuebelbeck learned that her unborn son had an incurable heart condition, she chose to continue with the pregnancy and built her own support system. She chronicled the journey and the death of her son, Gabriel, in her book Waiting with Gabriel. She also co-wrote a guidebook for parents facing similar situations, A Gift of Time, with Deborah L. Davis, a developmental psychologist.

Many advocates for perinatal hospice are women who had to forge a path for themselves during their own time of pregnancy, loss and grief.

Ms. Kuebelbeck moderated a panel discussion at the Vatican conference. “It was incredible to look into the audience and realize there were people there from all around the world who were there wanting to do something to help families like mine,” Ms. Kuebelbeck says. She says her family crafted their experience “by the seat of our pants.” Years later, when she first heard the term “perinatal hospice,” it was “an ‘aha’ moment,” she remembers. “Now we have words for what we were trying to do.”

Today there is a substantial body of medical literature on the topic and more than 300 perinatal hospice programs around the world. And Ms. Kuebelbeck estimates that there may be more “because a lot of people are continuing to provide this gentle care even without the words for it.”

Ms. Kuebelbeck’s website began as a collection of names of hospitals with perinatal hospice programs scrawled on scraps of paper. When she realized that her collection of scraps was the most complete record of these programs available, she decided to start an online resource that might help other parents in need. She says she hopes that one day the programs will be so commonplace her site would be as unnecessary as a website devoted to locating emergency rooms. “Starting a program is not expensive. In six months every Catholic hospital could have a program,” Ms. Kuebelbeck says. “All it takes is someone with some awareness.”

AUGUST 19, 2019 AMERICA | 2524 | AMERICAMAGAZINE.ORGLaura Gonzalez, left, holds her daughter, Amanda Joy Gonzales. Amanda, who has Trisomy 18, was expected to die shortly after birth. She was born on Oct. 10, 2013, and, against all predictions, is still alive.
Laura Gonzalez, left, holds her daughter, Amanda Joy Gonzales. Amanda, who has Trisomy 18, was expected to die shortly after birth. She was born on Oct. 10, 2013, and, against all predictions, is still alive. (Photo courtesy of Now I Lay Me Down To Sleep)

Amanda Balderrama knows what it takes. She was 22 years old and pregnant for the first time when her unborn son was diagnosed with a severe form of spina bifida. A registered nurse who lives in California, she sought out several opinions and asked question after question; but over and over, Ms. Balderrama, who is Catholic, heard only one thing from doctors: Her child was “incompatible with life.” She felt tremendous pressure to terminate the pregnancy and was scared for her family. “My husband lost his first wife in her last month of pregnancy. I didn’t want him to lose me, too,” she says. “I was told that was also a risk, that there could be more complications.” Devastated and seeing no other option, she chose to abort. She told few people of her decision and was unsure of where or how to direct her sorrow. “I learned to brush my grief under the rug,” she says.

Five years later, she learned that a friend from high school had lost a baby shortly after she delivered. “She talked about her baby as though it was a big part of her life,” Ms. Balderrama says. “I never talked about my son. I didn’t feel like I had the right to grieve, and I didn’t feel worthy of grief.” The friend invited her to a remembrance walk that helped to raise awareness about pregnancy and infant loss. The event included a table for a local hospital advertising its perinatal hospice program. When she saw the information about the program, Ms. Balderrama burst into tears. “I felt that if this was the choice that had been offered to me, I would have taken that,” she says.

She determined that she would do her best to make sure other parents understood their options. “I wasn’t given a choice. I was told to terminate, and I want families to have the option to carry to term,” she says. Ms. Balderrama founded a program called Journey to Remember, which partners with hospitals to provide support for families in circumstances like hers. Until recently, she also served as its director.

“We help them parent through love instead of fear. We help them to bond with their baby. We talk about things like grief.”

Ms. Balderrama’s program offers support to women in person or by phone. “We help them parent through love instead of fear,” she says. “We help them to bond with their baby. We talk about things like grief.” She also helps them plan as best they can. “A lot of times when families receive a diagnosis, a lot of decisions are stripped away from them,” Ms. Balderrama says. “We try to give as many parenting responsibilities back to them as possible.” They may help them schedule maternity photos or newborn photos, offer memory boxes for keepsakes or even attend a delivery to act as an advocate, help them manage end-of-life arrangements and refer them to support groups in the community. “I have seen many families who deal with their grief in a very healthy way because we’ve walked them through their grief throughout the pregnancy.”

Ms. Balderrama’s daughters are 18 and 13, and she has spoken with her oldest about her experience with abortion and why she now does the work she does to help other mothers. “I’ve told her we never hold judgment on anyone who made that choice [to abort] because we know how it can feel—like there’s no way out,” says Ms. Balderrama. She hopes her work has shown people that there is another way, and she is grateful to be able to speak openly about her son and her loss. “My son has taught me more about myself and my relationship with my Savior than anyone,” she says. “He has taught me about costly grace.”

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After an adverse fetal diagnosis, perinatal hospice programs often counsel the parents on how to communicate to the rest of the family, how to communicate with the siblings, how to talk to coworkers who innocently ask about your due date. “You go grocery shopping and your belly is sticking out and [a stranger asks] ‘Oh my gosh, is it a girl or a boy?’” Dr. Parravicini says, “and you want to die. All of this needs to be addressed and supported.”

Some families choose to have a “prayer shower”; some choose to have a photoshoot while pregnant. Some record the baby’s heartbeat or take three-dimensional ultrasound images. “We try to identify their desire and what is important to them even during pregnancy,” she says. “It’s not just about the delivery.”

Christine Nugent worked hard to build a supportive community—one that included friends, family, willing hospital staff and the Sisters of Life, who assist pregnant women as part of their mission—when her unborn daughter was diagnosed with Trisomy 18 at 20 weeks. “Some people thought I was crazy and didn’t want to work my case, and I said: ‘Get them out of my way. Get people who get it.’ Once the shock wears off, you realize you can do it, and there’s a lot of help out there, and you just need to find the help,” she says.

“Once the shock wears off, you realize you can do it, and there’s a lot of help out there.”

But Ms. Nugent, who is Catholic, also had to decide how she would discuss her pregnancy in more public settings. She was working as a science teacher in Long Island, N.Y., and told her most talkative friends about her decision to carry her daughter to term. They spread the word on her behalf. Ms. Nugent told her coworkers to spread the message that “they can talk to me like nothing’s happened. I’m O.K. with that. Or they can talk to me about something deeper.” If a stranger asked her about her pregnancy, she applied what she called the “three-strikes rule.” On the first question, she provided a superficial answer. After a second question, she would “smile and let it go.” But after the third question, she “let them have it,” describing her situation in detail. “I have to live with myself, and this is what is best for me,” she says. “This is my choice.”

Ms. Nugent’s daughter, Grace Ann, lived for two months, one in the hospital and one at home, a situation that she had not let herself hope for. She found herself both terrified and grateful. “Any mom I know who has carried a sick baby—are they scared? Are they heartbroken, do they have a lot of grief? Yes. I have never met a mom that regretted carrying. But you can’t make a decision if you don’t have good information, and they don’t all get that information,” Ms. Nugent says. “I see lots of women who have made the other decision. And I don’t judge them, but their grief is different.”

•••

In many perinatal hospice programs, the care continues long after the families leave the hospital. New York-Presbyterian’s Neonatal Comfort Care offers a bereavement group that provides long-term follow-up with a social worker as well as a group meeting once a month. “People underestimate the psychological thunderstorm that these families go through when a baby dies,” Dr. Parravicini says. “There is a mentality that says not seeing the baby or performing a termination is protecting yourself because you are not attached to the baby. This is not quite true,” she says. “The ability to hold the baby, to feed the baby or to have a picture with the baby, to see the eyes of the baby, it’s such a big factor in the grieving process and helps very much. These allow families to process much better.”

Severalstudies support the argument that terminating a pregnancy due to a diagnosis of a fatal fetal abnormality does not offer a shortcut through the parents’ grief. And, in fact, an article in the journal Prenatal Diagnosis stated that “there appears to be a psychological benefit to women to continue the pregnancy following a lethal fetal diagnosis.” The study found that women who continued their pregnancy showed less despair, avoidance and depression. Another study found that 97.5 percent of women who continued their pregnancy following such a diagnosis did not regret their decision.

“People underestimate the psychological thunderstorm that these families go through when a baby dies.”

Photographs of the children also have proved to be a meaningful keepsake for many grieving parents. Now I Lay Me Down to Sleep is a nonprofit that dispatches professional photographers who volunteer their time to photograph infants who are expected to live for only a brief period. “The process puts a face to these babies and provides healing,” says Gina Harris, the organization’s executive director. Ms. Harris knows this firsthand, as she lost two sons, David and Ethan, to fatal fetal conditions. Ms. Harris says that the photos can even play a role in the healing process for women who have lost children decades earlier. She has met many women who talk about their own deceased child for the first time after seeing photos of these babies. “We don’t photograph death,” she says. “We’re capturing love.”

•••

In May 2012, a level-2 ultrasound revealed that Melissa Borgmann-Kiemde’s unborn son’s cerebellum was not connected, he had a hole in his heart and he was taking on fluids. Still, she felt him kicking inside her.

“We knew that whatever the course of this life was, that we were there to listen to this life,” says Ms. Borgmann-Kiemde, who is Catholic. “We needed to state pretty explicitly that we didn’t want anyone to coach termination.” Yet she was less sure of what came next.

When they received the diagnosis, a friend dropped off Amy Kuebelbeck’s book A Gift of Time, along with some tacos, on her porch. The book introduced Ms. Borgmann-Kiemde to the concept of perinatal hospice and, reading it, she felt surrounded by the stories of all the other parents in the book. She thought: Oh my God, people do this. “All of a sudden your community widens, and you didn’t want this community in your wildest dreams,” she says. She began to plan and continued to pray.

“All of a sudden your community widens, and you didn’t want this community in your wildest dreams.”

At a routine doctor’s appointment in September of that year, Ms. Borgmann-Kiemde learned she would need to deliver early due to challenges the pregnancy caused for her own health. She was admitted to the hospital that day. She was forced to adapt her plans, but her friends and doulas and the hospital staff worked to make sure she could still include meaningful rituals in the abbreviated timeline.

They asked her, “What do you need to do before you meet your son?” She said she wanted to shower, she wanted to perform a blessing with the doulas and she wanted to arrange to have some photographs taken. All of it happened.

When the doctor performed the C-section, Ms. Borgmann-Kiemde had someone lined up to baptize her son, Xavier Jean Kiemde. In the hour that Xavier lived outside her body Ms. Borgmann-Kiemde bathed him and held him. The photos of the moments shortly after his birth capture the joy she and her husband, François Xavier Kiemde, shared in being with him. “He was stunning,” she recalls.

Ms. Borgmann-Kiemde remembers being grateful for just being able to hold Xavier for as long as she wanted, even after his death. She was given special permission to take him to the chapel where she prayed. And when the funeral director came, she anointed his hands with the same oil she had used to anoint her son. She was the one to place Xavier directly into the funeral director’s arms.

The crowd at Xavier’s funeral was larger than the one at the couple’s wedding.

The crowd at Xavier’s funeral was larger than the one at the couple’s wedding. Ms. Borgmann-Kiemde’s father and brother made Xavier’s tiny casket. Ms. Borgmann-Kiemde worked with an artist in Ghana to design a batik fabric that she used to make a cloth for Xavier’s casket and a dress for her daughter, Marguerite. Her husband is from Burkina Faso, and she wanted the family to be able to say of their West African heritage and their love, “We’re clothed in this.”

And then, after all the beautiful rituals, there came, of course, the grief. Her breast milk came in because her body could not know what her mind and heart were grappling with: that the child it had grown was now gone. This was followed, Ms. Borgmann-Kiemde says, by “cabbage leaves and raging.” (Cabbage leaves are traditionally used to decrease milk supply.) And 24 hours later, she was back at the hospital with anxiety attacks.

And, then much later, adding to the emotional toll was the financial cost. “I have just finished paying off those hospital bills,” Ms. Borgmann-Kiemde says, but she would not change her decision. “Emotionally, spiritually, psychologically, there is so much life and abundance that have come from that journey. It has allowed space for me to be present to others.” Ms. Borgmann-Kiemde says her son’s life and death has played a crucial role in her journey to become a spiritual director. “I think of Xavi, of his journey, as birthing this capacity to be present to what feels like the unspeakable and to how God’s journey is working in our life,” she says using her son’s nickname.

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There are as many ways to provide perinatal hospice as there are children who need it. “We follow your baby,” Dr. Parravicini says, meaning that the treatment and approach will be tailored to each child and may differ even for babies with the same condition, based on the child’s response and the family’s desires. And sometimes plans are adapted when children defy the odds.

“Eighty percent of our babies die soon after birth, but there are some that, if they can go through life, we help them with that, too,” says Dr. Parravicini. She points to a photo of a curly-haired toddler holding a green Christmas ornament—a girl who was not expected to live but is an active 2-year-old. Her heart condition means she will likely still lead a short life. But for now, Dr. Parravicini says, she enjoys playing with her siblings.

Dr. Parravicini says that her faith is the foundation of her work and inspires her to show love to her patients and their families and continues to teach her that “life is not in our hands.”

The biggest piece of art on her wall consists of several smaller works, simple paintings in broad brush strokes. Dr. Parravicini says they were done by former pediatric patients at the hospital, nearly a decade ago. They were about to be discarded, but Dr. Parravicini noted their beauty and saved them—and then framed them. “Can you believe it?” she says. “They were throwing it away.”

J Jones
1 week 4 days ago

Kerry, this is a beautifully done article, straightforwardly offering concrete information, offering compassion for everyone, offering options with kindness and gentleness for everyone, even those who make other choices. Beautifully beautifully done, Kerry. This is the first article I have encountered about perinatal hospice that has not felt like an excuse to batter and discredit women who have made and/or ensured other options. I will explore the links you provide. I will do so because I want to learn more about the medical care and options you researched and wrote about, rather than because you have written in a way which leads me to question (as I have with other authors here on this topic and similar ones) whether your goal is to report or persuade. I trust that you are reporting the facts, Kerry, and I trust that YOU trust your readers to be capable of consuming and assessing and utilizing straightforward, non-ideologically-packaged information, especially when women are being offered information about reproductive healthcare for themselves and neonatal care for newborns who will not survive. Many blessings on your career as a journalist. This looks like a good "beat" for you and for readers seeking reliable, trustworthy information

Lisa Weber
1 week 4 days ago

Excellent article! It is good to know that the care following the death of a newborn is getting so much better because parents live with the impact of that care for the rest of their lives.

David Vu
1 week 4 days ago

God blessed the parents, especially the mothers, who chose life and God's gift to be a father and mother regardless how short their child's life is. To be able to look at your child, hears his/her voice, and hold him/her in your arms no matter how brief that may be, is a priceless gift. God gave these parents the grace of faith to resist the temptation from the culture of death.

Nora Bolcon
1 week 4 days ago

Beautiful article.

I believe that is the thing that matters. Women and Families need to have the choice to cooperate with life and never be pushed into it by anyone, including our church.

We need laws to protect women's right to say no to pregnancy because abortion happens most often, and in far greater amounts, and also kills more women, in all the countries that don't allow for that choice. These are the facts and they are well-evidenced on a global scale. However, when countries do allow for women and their drs. and families to decide what is best themselves, on a case by case basis, women usually choose life. That is why in a country where we have abortion on demand, we also have a lower abortion rate now than even when it was a crime in the 1950s.

Just like an organ donor who if you threatened to make him give up a kidney to save another person's life, by making it a crime to refuse donation. He would fight such a law, with all his might, and would be more likely to find a way to deny getting the surgery, to have his kidney taken out, to save the other person, even if it meant he risked going to jail, rather than donate his kidney. But give him the option, and let him know how much it would mean to the life he is saving, and pay for his surgery, and all the care afterward, and keep his job secure by law, and his salary and career trek protected by law, while he is in recovering, and pay for his recovery time at home, and he will likely choose, and happily, willingly, to give his kidney to the other person.

People need to choose to give of their own flesh or they don't feel they have any dignity themselves. Some will still choose not to offer life but many more will choose to give of themselves instead.

rose-ellen caminer
1 week ago

We need to protect the life of the woman and of the unborn human being; it does not have to be either or. Anytime an adult chooses to not kill the sentient -capable- of -suffering unborn human ,it's good news. I believe in the inherent value[ sacredness, dignity, inherent holiness] of human beings; whatever their abnormalities, small or great , whatever their projected lifespan.[ Christian theology]

I don't believe in the inherent value of human suffering. I was not taught that as a Christian, and if I had been taught that, I would have rejected it.
Suffering is evil , all suffering is evil and exists as a result of the brokenness of the world.[ Christian theology]. Jesus's suffering is not what saves us;what saves us is the love of God, of Jesus expressed in His incarnation; his willingness to be in solidarity with us, with the human condition , the brokenness of the world , our suffering and death. It was not the suffering and death of Jesus that was salific[God can do anything/ any how, any way] but the will of God who loves His creation , who made us His creatures , in his image and likeness and so CHOSE to redeem us.[ grace]He could have incarnated, preached, and died a peaceful death in his bed, and then resurrected ,but then the message of Gods love for us contingent beings would not have been apparent to many[IMO].
Its always good news when "though shalt not kill" is observed. Human beings born with abnormalities have the right to their life and I would submit to being placed in NICU if that will enable them to become viable, i.e., capable of living, even with gross abnormalities necessitating much care which our society can provide[ right to life is a right of the disabled too] .

Killing a human being in the womb is out of sight for the mother, and father, and protects them both from the suffering of witnessing the suffering of their fetus, their living offspring, being killed. and all the suffering that having an abnormal child induces.But for the unborn being, it is another matter; they are not spared suffering ; rather they become the innocent victims of deliberate suffering and death inflicted on them.That too is profoundly evil!

Crystal Watson
1 week 4 days ago

I guess I'm in the minority, but this sounds awful to me. Instead of an abortion, parents are asked to give birth to a baby that is doomed to suffer and die either during or shortly after labor. Why? Because there's some value in suffering? Because parents won't have to feel responsible for ending a life (God will do it for them)? Because parents will get closure? Because hospices and undertakers will be able to ply their trade? Because it makes pro-lifers feel all warm and fuzzy? Yikes.

J Jones
1 week 4 days ago

Hi Crystal, I am 100% pro-choice. I know women who say they would choose this and I know women who say they would never choose this and I know women who would say they could not know what they would choose unless and until they found themselves in this devastating situation. Any and all hospice services are voluntary. It is a choice. Hospice care has nothing at all to do with suffering.

I do believe there is part of the Catholic community that engages in a sort of spiritual manipulation of pregnant women to sacrifice their own well-being. I am sickened by the narrative that makes Sainthood causes out of mothers who sacrifice their lives - and their existing children's mother - to carry to term a pregnancy that may result in the mother's death either because she foregoes lifesaving treatment for herself or because her body is simply not equipped to survive that pregnancy. If a woman chooses that, I support her one hundred percent AND I am sickened by Catholics who feed off of secondhand sacrifice and suffering to fuel their own prayer and a desire to be part of saintmaking (why go Medjugore when the Church is encouraging a local with small children to let herself die rather than terminate an early pregnancy?) I think there is also a part of the Catholic community that engages in a lot of destructive nonsense about physical suffering through their engagement with Catholic saints who embraced physical suffering and other forms of self-abuse (if I hear one more adult tell a girl about Catherine of Siena drinking the pus of sick people ... )

That said, I don't believe medically run perinatal hospice care - which is what the author is writing about - have anything to do with that.

This is end-of-life care. It is an option. It is a choice. I am 100 percent pro-choice.

What matters, when it comes to healthcare in general and in any specifics, is that the individual patient is presented all the options available without pressure and medical recommendations ONLY from medical providers. Other resources can be offered AND those other resource materials and persons need to be kept away from that woman unless she specifically requests contact with that resource materials or person. As in any other hospice context, hospice care is 100% voluntary and does not require that the patient or family engage in ANY religious or spiritual interaction. Period. Professional hospice care programs don't force anything on people. It is a CHOICE. And it does not value or encourage suffering. And it does not encourage the kind of manipulative melodramatic nonsense that was published here some months ago in which a woman with a healthy teenager in need of IV fluids during flu season used that story as her entree to discussing the unimaginable pain and profoundly difficult choices faced by women whose pregnancies will end in babies that die an hour after birth. This about healthcare, not prolife politics.

Crystal Watson
1 week 4 days ago

Hi J. Yes, I want to allow people to make a free and informed choice too, whatever that is. But this is the second article here I've seen encouraging women with fetuses that are going to die during or soon after birth to have the babies rather than have abortions .... they are pushing this choice.

Not everyone wants to endure suffering up until the very last minute of life when they are terminal ... that's why physician-assisted suicide laws are so popular. Hospice care is voluntary, but not for the baby whose suffering may not be totally eclipsed with drugs.

If a family wants to choose this for their baby, they have that right, but I question why Catholic pro-life people encourage women to choose this instead of the alternative. Myself, I would not choose this even for a pet.

J Jones
1 week 4 days ago

I agree that the prolife community is advocating for this. The first article was an ideological, condescending mess. That said, as long as information is straightforward and not manipulated (for instance, a recent article that reported NFP/FABM failures rates "as low as 2%", when the actual failure rate range is 2%-23% according to the sounce the author named but then did not link to), I support high quality education about options. I think this qualifies.
Women have the right to make their own decisions.

I support death with dignity laws, and I personally believe there is not an inconsistency here.

Peace, Crystal.

Crystal Watson
1 week 4 days ago

It would be a hard choice to make, either way.

J Jones
1 week 4 days ago

I agree. Devastating.

Paul Hierholzer
1 week 4 days ago

I don't understand this either. There is value in suffering, and we all suffer--it's a big part of being human, and that's all well and good, but I don't understand why Catholic teaching/culture encourages people to CHOOSE suffering when there's an alternative. Suffering will find everyone--it isn't necessary for people to find suffering. One of the purposes of a doctor is to try and help diminish suffering. Who are we to insist that someone be born, just so that they can suffer a little bit and then die? Is that what the baby wanted? It's like the Catholic ban on allowing a terminally ill patient to choose a peaceful dignified death before they rot away with cancer. Who are we to insist that they suffer as much as possible to the very end?

Judith Jordan
1 week 3 days ago

Paul Hierholzer---
I also don’t understand this call for suffering when there are alternatives. How many of these people who advocate for suffering would be willing to forgo pain pills after surgery. I believe there are not many.

Lisa Weber
1 week 3 days ago

Crystal - It is a choice to honor and love your child despite the anomalies that are incompatible with life. It is much like having a funeral for a baby that was stillborn at term. You can treat the baby who died much like a lab specimen to be disposed of or treat it like a child who was important to you for nine months and who will always inform your life later. I would never say it is okay to force a woman to continue a pregnancy in such a circumstance, but I very much understand why women choose to do so.

Crystal Watson
1 week 2 days ago

You make some assumptions ... that a woman who has an abortion because her child will be born dead or will dies soon after birth doesn't love her child ... that such a woman is treating her baby "like a lab specimen". I think you are wrong. A women who gets an abortion could be one who loves her child so much she doesn't want to put them through additional suffering before they die, she could be one who doesn't need a burial plot as a reminder of what she's lost. I would guess those women feel bad enough without having a Catholic representative condemn their choice.

J Jones
1 week 2 days ago

Crystal, I agree 100% with your last statement. That is why all of these options need to be presented by medical providers who keep their religious and political values to themselves unless explicitly asked by the patient for a religiously or politically informed statement. If she wants s chaplain involved, get the woman a chaplain asap. As with ANY other medical decision, including hospice at any other life stage, the patient ---- not the Roman Catholic Church or any representative thereof ---- gets to decide whether she wants religious or spiritual advice, input, resource materials or resource persons. My dad - a devout Catholic, a Knight - was in a Catholic-run hospice for five months and died a hospice patient, and neither he nor we EVER discussed religion or spirituality with any of them, other than to write "Catholic" on the form. They are medical providers. Had one of them engaged in any religious talk my father did not initiate (and again he didn't - they were his medical providers), we would shown them the door.

Crystal Watson
1 week 2 days ago

My mom died of lung cancer. She kept getting treatments that didn't really help and took a toll. She was taking 13 different meds and had radiation therapy and chemotherapy. She just couldn't stop fighting and that was her choice. It took a year and a half and she was at home until the last couple of days. She wasn't religious. All these choices are really personal to individuals.

J Jones
1 week 2 days ago

Hi Crystal - I am so glad your mom chose to live and die in the way that made sense to her and that you respected that living and dying for her had nothing to do with religion and no one had the right to impose a religion on her living of on her dying. My dad was at home until the last few days, too, and was diligently working on caloric intake and exercise along with pain management until the very end when his very high tech pain managenent for cancer couldn't be managed at home, even with hospice, anymore. He was at peace about dying when the dying moment would arrive but he was a hard-working life-loving man and wanted to work hard in the last moment he could work hard at living and then he settled peacefully into the moment for dying. He succeeded at both, which was his goal and ours for him.
I agree 100% that these medical decisions are really personal to individuals. As I said, we would have fired and shown the door to any medical provider or hospice worker who brought their religion to the table without being explicitly invited my dad, despite his Rosaries, despite the icon of Joseph holding infant Jesus in the dining room, despite the Crucifix in the bedroom, despite the Magnificat on the bedside. They were medical providers and their medical expertise is why we invited them into our lives, period.

J Jones
1 week 2 days ago

Hi Crystal - I am so glad your mom chose to live and die in the way that made sense to her and that you respected that living and dying for her had nothing to do with religion and no one had the right to impose a religion on her living of on her dying. My dad was at home until the last few days, too, and was diligently working on caloric intake and exercise along with pain management until the very end when his very high tech pain managenent for cancer couldn't be managed at home, even with hospice, anymore. He was at peace about dying when the dying moment would arrive but he was a hard-working life-loving man and wanted to work hard in the last moment he could work hard at living and then he settled peacefully into the moment for dying. He succeeded at both, which was his goal and ours for him.
I agree 100% that these medical decisions are really personal to individuals. As I said, we would have fired and shown the door to any medical provider or hospice worker who brought their religion to the table without being explicitly invited my dad, despite his Rosaries, despite the icon of Joseph holding infant Jesus in the dining room, despite the Crucifix in the bedroom, despite the Magnificat on the bedside. They were medical providers and their medical expertise is why we invited them into our lives, period.

J Jones
1 week 2 days ago

Hi Crystal - I am so glad your mom chose to live and die in the way that made sense to her and that you respected that living and dying for her had nothing to do with religion and no one had the right to impose a religion on her living of on her dying. My dad was at home until the last few days, too, and was diligently working on caloric intake and exercise along with pain management until the very end when his very high tech pain managenent for cancer couldn't be managed at home, even with hospice, anymore. He was at peace about dying when the dying moment would arrive but he was a hard-working life-loving man and wanted to work hard in the last moment he could work hard at living and then he settled peacefully into the moment for dying. He succeeded at both, which was his goal and ours for him.
I agree 100% that these medical decisions are really personal to individuals. As I said, we would have fired and shown the door to any medical provider or hospice worker who brought their religion to the table without being explicitly invited my dad, despite his Rosaries, despite the icon of Joseph holding infant Jesus in the dining room, despite the Crucifix in the bedroom, despite the Magnificat on the bedside. They were medical providers and their medical expertise is why we invited them into our lives, period.

Lisa Weber
1 week ago

I am not making assumptions about how a woman sees her child, but I am saying why a woman might choose to continue a pregnancy even though the child has a condition incompatible with life. She may continue the pregnancy because to do otherwise might feel to her like disposing of an inconvenience. Continuing the pregnancy may be part of how she grieves. I rather doubt that the conditions incompatible with life are painful to the fetus. Sparing the child pain is not a logical reason to end such a pregnancy.

I am sorry that your mother had a difficult death. The end of life is often difficult for everyone in the family.

Crystal Watson
6 days 14 hours ago

I think sparing a child (or an adult) who is already dying further suffering *is* a worthy reason to end their life sooner. This is why physician assisted suicide is so popular in the country - many people believe an extra few hours or days of life does not always balance out against pain. It's possible watching my mom suffer so much has had an influence on my feelings about this.

J Jones
6 days 2 hours ago

Crystal, I am sorry your mom suffered. There was a brief period when my dad suffered; it was in a Catholic hospital when hospice could no longer manage his high tech pain at home and before we got him transferred to the university hospital both capable AND willing to effectively manage his pain. In the Catholic hospital, my stoic father repeatedly called out "Lord have mercy on me!" I told the nurses to get a doctor to the floor and get his pain managed, period. I saw the panic in their eyes, in the eyes of the palliative care team. They were not willing to risk that adequate pain management might have the secondary effect of suppressing his respirations. They were not willing to allow adequate pain management to be the first priority for this stoic man crying out from the unmanaged pain of endstage pancreatic cancer. I saw that panic, and we had him out of there and at a non-Catholic university hospital within hours. His pain was managed; he lived for five days, long enough for family to gather from all over the country; was able to pull himself out of the fog of peace to greet each newcomer, and he died at peace and without suffering. I told the pain management doctor at the University that I believed what happened at the Catholic hospital bordered on malpractice, and he agreed. My father's soul neither deserved nor required that wholly unnecessary cruelty. I pray they learned from it; I wasn't willing to destroy my life trying to teach them through a lawsuit. It has been almost a decade and my belief is that this kind of cruelty is rare now; I pray that a Catholic hospital unwilling and unable to manage pain adequately would take the initiative to get a patient to a hospital that is willing and WILL. I was really angry for a long time about that cruelty in a hospital my profoundly Catholic dad trusted until it failed him so tragically in the last week of his life and, if I did not live a city where the hospitals are all Catholic, I would never step foot in one again. Fingers crossed I will die at home in my sleep and avoid them altogether... So I understand your anger, Crystal.

Lisa Weber
5 days 4 hours ago

I doubt that the conditions incompatible with life are painful to the fetus, so ending the pregnancy to end fetal suffering is not logical. Whether ending the pregnancy ends the suffering of parents is a separate question. There is no easy way out of such a situation. To do what reduces suffering is sensible.

With regard to your mother’s suffering with lung cancer and the associated treatments, I am sorry that you had to suffer through that as well. I don’t know how long ago she died. I know that pain management with cancer has improved over the nearly five decades I have been in healthcare. There used to be situations of terrible, intractable pain - and it was awful even to witness that kind of suffering whether the person was known to you or not. I can’t imagine witnessing that happening to a loved one.

Donna Zuroweste
1 week 4 days ago

An absolutely prime example of why Board Certified Chaplains should be involved in Hospice Care. Who took care of the spiritual needs of the whole family system? No one educated and trained to do so.

Social workers who violated professional boundaries, MDs who violated professional boundaries, RNs who violated professional boundaries. Crazy making.

Jeanne Devine
1 week 4 days ago

I'm all in favor of chaplains and pastoral care by a family's pastor, if requested. But why are the professionals you mention violating professional boundaries? I'm sincerely asking.

J Jones
1 week 4 days ago

I wondered same. I don't hear evidence of that in this article. I am also sincerely asking.

Michael Bindner
1 week 4 days ago

This is a blessed program and an alternative to aggressive treatments that will have no good. It is also an alternative to late term abortions. Indeed, it should be used with induced labor if continuing the pregnancy is harmful to the mother.

Terry Kane
1 week 3 days ago

https://www.desiringgod.org/articles/the-misuse-of-exodus-21-22-25-by-pro-choice-advocates

Andrea Campana
1 week 3 days ago

I hardly ever talk about this, but I had four or five miscarriages years ago due to a trisomy in each case, all diagnosed at NY Hospital. Now I find myself in the strange position of tutoring children with language-based disabilities, and in particular a child born with extra chromosomal material. He has no thumbs and a severe speech impediment, but oddly, he is well aware, at the tender age of eight, that most people cannot understand what he is saying half the time. I must say that, while anyone caring for him must be filled with endless patience, he is one of the most delightful children I have ever experienced. He is hyperactive but in a sort of amusing way--the life of the party and the one who gets all the other children excited about break time between learning sessions. He delights at the simplest game of hide-and-seek, and his laugh is infectious. I've grown to love him, and he senses that. Today, he kissed me on the arm. I was shocked, and initially my "teacher" instinct of "this is about teaching and not affection" immediately kicked in, but I must say that I'm so overwhelmed by all this love that I don't know what to do with it. Yes, his eyes are a bit distant and spooky, but I'm keeping an eye on them. As soon as I see them change, I'll know that love is stronger than chromosomal-deficient genetics. The way in which God works is amazing. My miscarriages have miraculously been replaced by the very children that I should have borne. It must be grace.

Oz Jewel
1 week 2 days ago

Andrea, you will find much to enrich your understanding and minister to your heart by reading some of the writings of Jean Vanier, the founder of the L'Arche community movement.

Andrea Campana
6 days 19 hours ago

Thank you! I will look into these writings.

frank troia
1 week ago

Sounds like there is a Catholic fixation with suffering for its' own sake, particularly for women. Seems like life gives us enough suffering as it is.

A Fielder
1 week ago

This is an excellent article. I love this new approach to being pro-choice. I grieves me greatly that this choice to give birth is sometimes discouraged (or prohibited) by providers and government officials.

Also, I hope the bishops take note of this very good advice. “I’ve told her we never hold judgment on anyone who made that choice [to abort] because we know how it can feel—like there’s no way out,” says Ms. Balderrama.

John Barbieri
1 week ago

Thank You, Ms. Weber, for this lovely, humane, and compassionate article.

Vincent Gaglione
6 days 22 hours ago

So, not to be contentious but truly sincere, where are the pro-life people who will support legislation to require such programs in every obstetrical hospital in the nation, no matter the cost? Instead of vilifying people in these circumstances with anti-abortion laws, here is an example of a program that provides physical, social, emotional, and spiritual support, which apparently is very appealing to women and families facing the most profoundly difficult pregnancy circumstances. This is an article that challenges us to provide.

kmmlaird@yahoo.com
6 days 21 hours ago

After reading some of the comments written here, I was initially hesitant to share my own story, but out of concern for other women who might be facing a similar situation, I feel compelled to do so. Perinatal hospice was such a blessing for our family. Our beautiful son, Rory, was diagnosed just a few months ago -- during my 20 week ultrasound -- with Trisomy 18, a fatal chromosomal abnormality. The support, care and compassion I received during the remaining duration of my pregnancy, the day of Rory's birth, and the five precious days my husband and I had with our son in this life was immeasurable. The stress of our whole situation was greatly lessened with incredible support at every level, so that my husband, my daughters and I could be prepared for Rory's arrival. For the five days Rory was with us, we were guided and cared for -- and so many arrangements were made on our behalf -- so that we could enjoy and focus totally on Rory and our other children, who immersed themselves in care for their baby brother. Even though we were not being treated at a Catholic hospital (and termination was indeed suggested to us), the recognition of the gift of my son's life and the brief celebration of Rory’s time here on earth helped ease the sadness of his passing from this life into the next. He died on Father's Day, in my arms, and, I want to emphasize -- at all ALL times he was free of pain or any distress. He did NOT suffer. We have photos and keepsakes and blessed, happy memories of our time with our son who is and was a member of our family. The entire medical staff- both doctors and nurses, emphasized several times to us that they were really affected by Rory's birth and his time with us- how beautiful and loving it was. I am grateful to America for making this option known to other women who are facing a pregnancy like mine. Since Rory's death and "Celebration of Life" Mass, I have been deeply saddened by the number of women who have contacted either me or my husband, telling us things like, "I wish this option had been available for me." We are sharing this article with our family and friends.

Lisa Weber
1 day 7 hours ago

Thank you for sharing your story. The importance of having options in this difficult situation cannot be overemphasized.

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