The hospital program for parents facing tragic prenatal diagnoses
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.
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.”
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.
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.”
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.”
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.”
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.
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.”
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.
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.
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.
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!
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.
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?
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
Thank You, Ms. Weber, for this lovely, humane, and compassionate article.
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.
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.
Thank you for sharing your story. The importance of having options in this difficult situation cannot be overemphasized.