Jeanne Deibert knew as soon as she saw the ultrasound.
It didn’t matter that the doctor told her that what looked on the screen like pockets in her son’s brain would likely disappear as he got closer to birth. That things were probably fine. That she shouldn’t worry too much about her baby.
She was his mother. And she felt certain that something was wrong.
As her pregnancy progressed throughout the winter of 2005, other tests raised more red flags until finally the phone rang one afternoon as she stood in the yard of her Seattle home. On the other end was a geneticist, confirming the results of her amniocentesis: the baby had Trisomy 18.
The chromosomal abnormality, which causes heart, kidney and severe mental disabilities, is usually fatal. It occurs in about 1 in 6,000 live births, but many babies who have it die before they are born and those who live often only survive a few days. Less than 10 percent live one year or more.
As Jeanne and her husband, Steve, both Catholics, talked with doctors, they were always clear that they were going to continue the pregnancy. It was against their faith to do otherwise. And they were just as deliberate in planning to parent their son, who they named Robbie, the best way they could, for as long as they could.
As the number of pregnant women being routinely screened has risen, so have dire diagnoses before birth. Only 15 years ago, prenatal screenings could detect less than a dozen conditions, while now it's possible to test for hundreds, ranging from mild forms of hearing loss to deadly Duchenne Muscular Dystrophy.
But the paradox of modern medicine is that knowing doesn’t always mean the outcome will be better. Sometimes you can just see death coming from a long way off.
“The ability to diagnose these problems has absolutely raced ahead of the ability to care for these families,” says Amy Kuebelbeck, whose book “Waiting with Gabriel” chronicles the life and death of her son, who was diagnosed prenatally with a deadly heart defect in 1999.
Two choices, both heartbreaking
In response to the growing number of families struggling with wrenching choices, about 55 perinatal hospice programs have sprung up around the United States in the last decade, says Kuebelbeck, who tracks them on her Web site www.perinatalhospice.org. The programs are designed to provide medical and emotional support for families with a terminal prenatal diagnosis who decide to continue the pregnancy.
“Before a baby would pass away and the family may not know what’s going on. Now potentially someone could have an abnormal screening and diagnosis at 12 weeks and have this whole pregnancy stretch ahead,” says Cheri Shoonveld, a genetic counselor for Fairview Health Services in Minnesota and a spokesperson for the National Society of Genetic Counselors. “Families are having to make a lot more decisions and have a lot more time to think about the impact.”
Studies don't specifically track how many families in the United States choose to continue the pregnancy after receiving a terminal prenatal diagnosis, but in Shoonveld's experience only between 10 percent and 20 percent of families go on with the pregnancy after hearing the devastating news.
However, a small British study in 2007 found that about 40 percent of families with a terminal prenatal diagnosis decided to continue the pregnancy when perinatal hospice was offered.
Both options — to terminate or continue the pregnancy — are heartbreaking.
“It’s the worst news that anyone could get — that your child is going to die,” says Schoonveld. “These horrible feelings aren’t going to go away with a termination. But the flip side is that they’re not going to go away after a baby is born either. ... For many families it's their first real parenting decision.”
Many have family and friends who are mystified as to why a couple would continue a pregnancy knowing their child will die. Loved ones often fear that by continuing on, the parents are simply delaying their grief or torturing themselves. What will they say to strangers who casually ask if the nursery is ready? And what if bringing the baby into this world causes the child suffering?
But for some, the pregnancy feels precious because it may be the only time they’ll get to be with that child, says Schoonveld. “I think most people who have continued want to experience as much time with the baby as possible and want to hopefully meet the baby.”
Other families may have religious reasons that guide their choice. Sometimes parents may hold out a hope that somehow the terminal diagnosis was wrong. And others just don’t want to be the one who decides when their baby dies.
“Don’t assume we’re Luddites or religious fanatics,” Kuebelbeck says. “Don’t assume we’re saints. We’re just parents doing the best we can.”
As Jeanne’s pregnancy continued, she and Steve created a specialized birth plan. It had Robbie’s name at the top and the funeral home’s phone number at the bottom. In the middle they detailed three scenarios: what to do if Robbie was born breathing, what to do if he was not breathing and what to do if his heart wasn’t working. No extreme measures, they decided. And in each scenario, they wanted him in their arms as soon as possible.
“Robbie’s life will be lived with love and honor,” the birth plan stated.
The Deiberts worked with Providence Hospice of Seattle's Stepping Stones Pediatric Program to help fulfill that goal. The Seattle perinatal hospice supports families during pregnancy and can help make it possible to bring the baby home after birth if that's what the parents want, says Maureen Horgan, a social worker and the program's coordinator.
When the child dies, staff can help parents make their memories tangible by cutting a lock of their baby's hair or making hand impressions that parents can run their own fingers over during all the years to come. Horgan also knows the kind of practical, crucial details you never want to have to learn — such as how bathing in warm water can help stave off rigor mortis, buying precious time for parents who want to hold their child’s body.
Robbie was barely breathing when he was born on May 18, 2005 at Seattle’s Northwest Hospital. Doctors worked on him for minutes that seemed to stretch on into forever before finally deciding to give him to his parents to hold as he died.
Jeanne, then 40, exhaustedfrom a long labor, drank in the feel of her son in her arms, memorizing every detail. She took in his tiny hands, wide-set eyes and his perfectly shaped ears that she knew probably couldn’t hear.
Then Steve, 43, cradled him and started introducing his youngest son to the crowd of friends and family who had gathered in their hospital room.
“It was clear I was taking him around to say hello and goodbye,” he remembers.
Nearly a half hour after his birth, when Robbie’s breathing was still imperceptible, Steve bent to show his son to Jeanne’s 92-year-old great aunt Veva Conley and she impulsively reached out to warm Robbie’s foot, turned purple from lack of oxygen. In that instant, everything changed.
Robbie, presumably startled, took a deep breath. And another. And another. Soon his breathing was normal and his color started to improve. The next day, Stepping Stones helped them arrange to take him home to their light-filled house to live with his 2-year-old big brother, Stevie, for as long as his body would last.
“My big hope was that his life, however long it was going to be, would be full and not painful,” says Steve. “I would have gladly accepted a miracle, but I didn’t have hopes for him to go to college. We thought, ‘What’s the most we can do for him?’”
‘Things could have been done differently’
The precious hours the Deiberts spent with Robbie in their arms immediately after his birth would have been unheard of in most hospitals only a few decades ago. Doctors and nurses often wouldn’t let parents see their child if they knew the baby was going to die or was stillborn, believing it would be less searing for parents to let go if they’d never said hello.
In 1982, Annette Klein’s daughter was born dead. The staff allowed her to hold Courtney for a few minutes, unusual for the time, but then a doctor brusquely told her, “Well, this has got to end sometime. It’s going to be hard. We may as well just get it over with now.”
But even that brief time was everything. “When I saw her I was filled with this immense mother’s love. … And holding her after her death meant for me that that denial was gone.”
As a nurse herself, she thought about all the other families who didn’t get even the few precious moments she’d had — and wondered what it would have been like if she’d had more time with her daughter.
“I look back and think of all the things that could have been done differently. That was really the impetus,” she says.
Today, Klein, a nurse who specializes in parent education and support at the Birth Center at United Hospital in Minnesota, estimates she’s worked with about 200 families with a terminal prenatal diagnosis, providing one-on-one birthing classes so grieving parents don’t have to sit surrounded by giddy mothers- and fathers-to be. She also offers them their own private tours of the birthing wing and encourages them to start parenting their child in utero since that might be the only time they have with their baby.
“I tell them, ‘You are already a mother and have an amazing opportunity to love them, parent them, sing them their little lullabies,’” she says.
‘Born perfect, except for his heart’
Not all medical caregivers are supportive. Schoonveld, the genetic counselor, has a friend who was told by her doctor that the pregnancy would be so stressful for her that she should terminate. When she decided to continue her pregnancy, “the response she got was, well you might as well not even show up for your appointments because this baby isn’t going to live.” Maureen Horgan, of Stepping Stones, has talked with women whose doctors didn’t see the point in weighing them at their prenatal checkups.
Kuebelbeck hopes to help change that kind of reaction. She is often asked to speak at medical conferences around the United States about perinatal hospice, encouraging doctors and geneticists to support those families who do choose to continue and sharing the story of her son, Gabriel.
Three and a half months before he was born, Kuebelbeck found out that Gabriel had an incurable heart condition and would die soon after he was born. She and her husband decided to fill their pregnancy with things they once hoped to introduce Gabriel to in the years following his birth.
“People assumed the time of waiting was torture,” she says. “But it wasn’t. We had a lot of beauty in it. We had to change our thinking: We weren’t going to get to keep him, but this was our time with him. We think of it as our summer with Gabriel. We took him fishing. We had a family portrait taken. We took him to a baseball game. We picked out his casket. All of those were ways of parenting Gabriel.”
He was born on Aug. 8, 1999 and lived for two and a half hours. During his short life, his sisters and extended family met him and held him and Kuebelbeck’s husband baptized Gabriel himself when it was clear the priest wouldn’t arrive before he died. He was beautiful, Kuebelbeck remembers. “Born perfect, except for his heart,” read the announcement she sent out about Gabriel’s birth and death.
Some have wondered why she’d put herself through a pregnancy and birth when she knew she’d go home with empty arms. “It isn’t all for nothing,” she says. “You can still love that baby, protect that baby and give that baby a peaceful goodbye. That’s not nothing.”
Living life fast
Like Kuebelbeck, the Deiberts wanted to make whatever time Robbie had as rich and loving as possible.
In the days that followed after they went home from the hospital, Steve and Jeanne took him to the beach, to church and to visit friends. When he turned 1 week old, they celebrated with a brownie and candle, knowing he wouldn’t be alive to see his first birthday.
“We had the sense we needed to live life fast,” says Jeanne.
When the family wanted to take Robbie on a car trip across the state to visit relatives, Stepping Stones helped put them in touch with a hospice in another city in case Robbie died on the way.
Jeanne wasn’t sure exactly how much Robbie was aware of. A nurse told her he was probably deaf. She doesn't know how much he could see and wonders about his brain function. But her goals for his life were simple.
“I wanted people to experience him,” she says. “And I think he was experiencing being held.”
Jeanne and Steve traded off caring for Robbie in three-hour shifts around the clock. Both of them were terrified each time he dislodged the feeding tube from his nose; if they reinserted it incorrectly it could go into his lungs, which would kill him.
A nurse from Stepping Stones came over nearly every day to see the family and check on Robbie.
“They’d say, ‘Oh, he looks beautiful. You’re doing great. He seems happy.’ It was so reassuring that we were doing the right thing. It helped us to relax because every day we were wondering ‘Is this the day?’ ‘Is this the moment?’ And we knew that they were going to come (when he died). We weren’t going to be alone,” Jeanne says.
At night, Jeanne slept with Robbie cuddled against her chest. She’d heard about other parents of terminally ill children who woke in the morning to find their child dead in the bassinet and she wanted to make sure that didn’t happen. She needed to know the moment her child died, to be with him and see it through.
‘Hold on tight … and let go’
At about 8:15 a.m. on June 16, 2005, Jeanne was in the kitchen with her mother making breakfast. Nestled into a carrier against her chest, Robbie’s breathing began to change. He took a breath … and then a long pause. Then he took another, followed by stillness. Then at last another breath.
Jeanne ran into the bedroom to wake Steve. As she started to describe his breathing pattern, they realized Robbie wasn’t breathing. Jeanne laid him down on the bed beside Steve. “No, no, not yet,” she pleaded over and over as she rubbed Robbie’s cheeks, hoping to prompt him to inhale.
He never took another breath. He had lived for 29 days.
“I think he just turned off,” remembers Steve.
The Deiberts called Stepping Stones and a nurse came over to help prepare Robbie’s body and notify the funeral home.
“It was one of those things you don’t learn in normal parenting manuals — who do you call when your baby has died?” says Jeanne.
Soon friends, family and their priest were filling their home, holding Robbie’s body and loving him, just as they had the day he was born.
“The whole experience was very serene,” she says. “I don’t think we put him down once during that time.”
That morning as Jeanne and Steve sat on the sofa cradling Robbie’s body, their son Stevie walked over and placed his beloved stuffed dog gently on Robbie’s chest, a big brother’s last gift.
The night before Robbie’s funeral, Jeanne hand-lined the small wooden casket a friend had made. While she worked, she envisioned parallel worlds — the real one where Robbie died, but also a glorious imagined one of what it would be like if he’d lived.
As she carved padding from the mattress that had once lined Robbie’s crib and covered it with soft fabric for his coffin, she pretended she was making a Halloween costume for him. While deciding the details of his service, she imagined what it would have been like to plan instead for his wedding years down the road.
Today, the Deiberts first son, Stevie, is now almost 5 and loves trains and puzzles. Sixteen months ago, they had another baby, a little girl named Adele. Jeanne stays home with her kids, and the family still lives in the house where Robbie spent his life. His photos adorn table tops along with pictures of his brother and sister. Jeanne is tenderly keeping mementos from his life, like a hand-made blanket, Robbie's birth announcement and the outfit he wore home from the hospital, so Stevie and Adele can have them when they're older. Robbie’s footprints, forever tiny, hang on the wall.
"Robbie taught us to love what we have, when we have it, because time is measured," Steve said in the eulogy he delivered at his son's funeral. "Robbie has taught us to hold on tight — and to let go."