When a baby is destined to die
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‘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.
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Courtesy of Deibert family Steve Deibert and his oldest son, Stevie, celebrate Robbie's 1 week 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.”
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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.
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Courtesy of Deibert family Jeannie Deibert holding Robbie after his death. |
“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.
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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."
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