The New York Times, March 13, 2007
By NEELA BANERJEE Published: March 13, 2007
|A perinatal hospice program helped Jill Kilibarda prepare for the birth of her severely ill daughter Alaina. (photos by Ruth Fremson)|
MINNEAPOLIS — The day after Alaina Kilibarda was born, her breathing started to falter, as her family knew it might. During the pregnancy, doctors had told James and Jill Kilibarda that their baby had a lethal genetic problem that would probably end her life within hours of birth.
Most couples choose to have an abortion when they learn that the fetus has a fatal condition. But experts say about 20 to 40 percent of families given such diagnoses opt to carry the pregnancy to term, and an increasing number of them, like the Kilibardas, have turned to programs called perinatal hospice for help with the practical and spiritual questions that arise.
Having learned through the hospice to make the most of the time they had with their child, Alaina’s parents held her and told her things that people reveal to their children spontaneously and haphazardly over a lifetime. Into the October night, as her breathing halted and resumed, they explained how they met in Texas, though both were from Minnesota, and that they fell for each other at first sight. “And we told her that we’ll let her go,” Mrs. Kilibarda said, “and that it’s O.K. to go.”
Traditionally, doctors and nurses dealt with babies born with fatal anomalies by whisking them away from their mothers to die. But in the 1970s, a perinatal bereavement movement began offering parents another way to deal with the death of a child at birth, by acknowledging the grief they feel and by creating family and religious rituals around a stillbirth or early death.
Drawing on that philosophy, at least 40 perinatal hospice programs have been started in the United States in the last decade, said Amy Kuebelbeck, an author in St. Paul whose son Gabriel died of a heart condition hours after his birth in 1999 and who has researched the subject.
A collection of services rather than a stand-alone facility, perinatal hospice programs are often associated with hospitals. Hospice nurses and social workers do things like arrange birthing lessons for women who do not want to be in classes with those carrying healthy babies. They give advice on how to tell other children in the family that the new baby will not be growing up with them. If the newborn lives beyond a few days, the hospice staff teaches the family how to take care of the baby at home.
“Families can choreograph their child’s very brief life with their family,” said Lizabeth Sumner, palliative care coordinator at Elizabeth Hospice in Escondido, Calif. “Sometimes they may have a matter of minutes, so they decide beforehand who can hold the baby, who will cut the umbilical cord, who will hold the baby when you know he is going to die.”
The Kilibardas’ daughter survived that first night and is now 20 weeks old. But her parents realize those anxious early hours may be replayed when she dies, probably before she reaches preschool.
At first, the Kilibardas did not even know what to ask about. But the hospice program guided them through the possibilities. “I was really reluctant to do it,” Mr. Kilibarda said. “It was like homework. But in the end, I felt that if anything were to happen, Jill and I had probably discussed it already.”
Giving Families Control
Some in the anti-abortion movement strongly support perinatal hospices. In Minnesota, a law was passed last year that called for women to be informed about perinatal hospices. But many hospice workers seem free of ideology. They say they hope to give families control over an event that could otherwise crush them. They also say they want to ease the isolation many families face in dealing with profound grief.
“I tell them this will shake up their relationships with their family and friends, it will shake what they believe about the world and their faith,” said the Rev. Peter Lund, a United Church of Christ minister and chaplain of the hospice program at Children’s Hospitals and Clinics of Minnesota in Minneapolis.
The questions the experience unearths are the most essential people face, he added. “How does your inner life fare, your relationship with God, as this progresses? How do you deal with everything that comes up? And how does that echo inside you?”
The Children’s Hospitals program here is called Deeya, Sanskrit for “a small light.” Since 2001, Deeya has served six to eight families a year, who mostly hear of it from genetic counselors and midwives. At the Birth Center of United Hospital in St. Paul, about 24 families a year choose the perinatal hospice approach.
The numbers are growing but small, said Jody Chrastek, Deeya’s director, because many health care workers do not know the program exists, and some doctors are hostile to families continuing the pregnancies.
“Some have been told they’re wasting their time for a baby that would be dead anyway,” Ms. Kuebelbeck said. “Some have been told they’re wasting the doctor’s time.”
Supported by a grant from a family that lost a child years ago, Deeya is free. But money for perinatal hospices is frequently offered with the stipulation that families be steered away from abortion, should they reconsider their decision to proceed with the pregnancy, Ms. Chrastek said. Deeya and many other programs not affiliated with the anti-abortion movement decline such offers.
Families in hospice programs generally decide to let their children die without aggressive medical intervention, including feeding tubes, intravenous fluids and surgeries. They give medication to ease the child’s discomfort. Most children whose families participate in Deeya are stillborn or die within hours of birth, Ms. Chrastek said. About 30 percent of children go home with their families, where most eventually die.
For Mike and Janel Newell, the first hints of problems with their second child came after an ultrasound and blood test at 12 weeks. Their baby was found to have so many problems that no one seemed certain what would happen to him.
The ultrasound showed a large fluid-filled growth that extended from the back of the baby’s head to the base of his spine. Many families learn of problems this way, as routine ultrasounds uncover abnormalities like extra digits, club feet or cleft palates that sometimes signal far more severe problems, said Dr. Suzanne Toce, medical director of the Neonatal Intensive Care Unit at Gundersen Lutheran Health System in La Crosse, Wis., and director of a hospice program.
Chromosome tests revealed nothing unusual. But the baby’s cyst could not be removed, the Newells were told. It was so large that it was probably pushing against his trachea, and would limit his breathing. Facing such news, the Newells discussed terminating the pregnancy.
“Our knee-jerk reaction was to terminate the pregnancy because we couldn’t burden our family with such a sick baby,” Mr. Newell, 39, said. “It was a big relief for me when we asked our doctor if the baby had any chance and he said, ‘No.’ We didn’t have to make the choice anymore. It was completely out of our hands, and that was a better place to be.”
“So what do we do to make our time with him good,” said Mrs. Newell, 36, “because that would be our only time with him?”
Mrs. Newell’s midwife gave her the number of the Deeya program. People from the program came to their house, where Mrs. Newell works as a database architect and Mr. Newell is a stay-at-home father to their 2-year-old, William.
The most critical help Deeya provided, Mrs. Newell said, was a way to talk to others about the possible loss of their younger son, whom they named Joseph. “The program gave us permission to feel that this is something that is not out of the ordinary, that this is just life and people lose babies,” Mrs. Newell said. “And they showed us how to reach out to people who are helpful for us.”
A Deeya social worker, Martha Schermer, told Mrs. Newell that simple answers to questions from strangers about the baby’s due date were fine, but that co-workers and acquaintances needed more information, so they might provide support.
Facing the Bad News
The Newells had informed few of the pregnancy. Now, they had to tell family and friends that their child had life-threatening problems. In the first three weeks after they spread the news, no one called.
The isolation families experience when their baby is sick is common, Deeya staff members said. “Part of our role is to normalize things,” Mr. Lund said. “All your family may pull together with support. But the truth is, they will probably say the stupidest things or stay away entirely.”
Mrs. Newell’s father called and urged her to consider an abortion. The Newells say they are uncomfortable with any political meaning that people might read into their decision. They are church-going Roman Catholics, and support abortion rights. Two other families who spoke about their experiences are also religious and supporters of abortion rights.
“I can’t tolerate people who think this is anything but a gut-wrenching choice,” Mr. Newell said. “By the same token, it was our choice to make, and if you had tried to restrict that in any way, it would have been very upsetting.”
Over time, Joseph’s cyst contracted and then began to grow again. He developed kidney problems. Blood periodically stopped flowing through his umbilical cord.
Joseph Milton Newell was born on Jan. 8, 11 weeks early. A 5-pound, 2-ounce baby with his father’s nose and the same cleft chin as his older brother, Joseph was a stillbirth.
The nurses placed him on his mother’s chest, as if he were a healthy baby, and his parents held him for the short time they had. With the encouragement of hospice staff and his wife, Mr. Newell took the one chance he would have to dress Joseph.
For the moment, the Kilibardas have settled into the rhythms of any family with a newborn. Mrs. Kilibarda, 32, recently went back to work as manager of volunteer services for Habitat for Humanity, and she and her husband, who owns a driving school, are splitting the care of their baby, Alaina.
She is their first child, small and light as a bird. They bathe her, read to her, feed her. “When things are like this, you’re trying to rationalize how she will live forever, that maybe she’s the one, the one who makes it, and she’ll be fine,” Mr. Kilibarda, 33, said. “And then she has a bad coughing episode and it comes all crashing in.”
Alaina has Trisomy 18, one of several genetic anomalies that occur when a child has three chromosomes, rather than the normal two, in the 23 pairs of chromosomes people have. The most common disorder is Trisomy 21, which is Down Syndrome. Alaina has three chromosomes on the 18th pair, a condition so severe that something is wrong with every cell in her body, Mr. Kilibarda said. Most babies with Trisomy 18 die shortly after birth, often because they stop breathing. Alaina is among the rare 10 percent who live past two months.
Caring for Alaina
The couple, both Roman Catholics who support abortion rights, struggled with continuing with the pregnancy. “We’re spiritual people, and we decided we can give ourselves up to God,” Mr. Kilibarda said of their decision. “Her life will be what it will be. If she lives two weeks, that’s her life. She’s our child.”
After deciding to continue the pregnancy, the couple contacted Deeya.
A nurse at the hospital where Alaina would be delivered, Raquel Beucler, arranged private classes with a childbirth educator. Ms. Beucler checked on the Kilibardas during the delivery and spent time with their families in the waiting area. Most critical, she put the Kilibardas in touch with a neonatologist who talked to them about the problems their child might have and the medical interventions available. The couple decided against them.
Through the hospice, Mr. Kilibarda met Mr. Lund, the chaplain, who was at the Kilibarda home one recent morning. The Kilibardas were not close to their priest, and they felt reassured that the chaplain had helped others in their situation.
“When she was born, part of me wanted her to just pass away, so I could deal with the grief,” Mr. Kilibarda said. “That’s just sick, but I couldn’t help it. And I had Peter say others had told him that, too, and I thought, thank goodness, I’m not crazy.”
Alaina’s birth and the family’s discussions with Mr. Lund have made them think a great deal about God’s role.
“When we were expecting Alaina, people said, ‘You’re in our prayers,’ ” Mrs. Kilibarda said. “But people were praying to make it a mistake, to make it all better for us.
“We weren’t asking, ‘Make it all better,’ ” she said. “God doesn’t come down and touch you to heal you. He sends people to be with you.”
Hospice workers encouraged the Kilibardas to make memories with Alaina. So while parents of healthy newborns might avoid crowds or other situations where their children might get sick, the Kilibardas have taken their daughter to their favorite coffee shop, the houses of friends and big family get-togethers. They want to know, they said, that she was once in places that mean something to them, like the cold forests of northern Minnesota where Mr. Kilibarda grew up and where they recently took her.
“I want to go through this with my eyes open,” he said, explaining why he turned to the hospice program. “I want to feel every ounce of pain, of happiness, because if I avoid it now, it will come back to bite me. I want to experience grace. What does that mean, because it’s such a vague term?
“I’m still trying to figure it out. I think I’ll experience it when this event comes complete,” he said, as his voice cracked, “when she passes.”
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