When a baby is destined to die

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.”


Meeting Robbie


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 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."