A brief, tiny life
BY JENNIFER SOKOL
An ultrasound radiologist gave Jeanne and Steve Deibert the diagnosis of their unborn son on a winter evening in 2005. “Your baby has Trisomy 18. Not viable. I’m sorry.”
The devastated couple received no further guidance, so they returned home to search the Internet for information regarding the chromosome abnormality.
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Robbie Diebert, who was diagnosed with a fatal chromosome abnormality prior to his birth, lived a full life lasting 29 days surrounded by those who loved him. Robbie's Grandmother, Vi Deibert, hold’s her grandson on the occasion of his baptism at St. Benedicts Parish in Seattle.
Photo courtesy Mary Sue Cummings |
What they learned is that 1 in 6,000 babies are diagnosed with Trisomy 18. Because the syndrome severely affects all the child’s organ systems, 95 percent die before birth. Those that survive die a short time after delivery.
An amniocentesis confirmed the grim report and the Deiberts immediately shared the news, seeking the support of medical professionals, family, friends and their parish community at St. Benedict Parish in Seattle.
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Jeanne and Steve Diebert are pictured with their daughter, Adele, 1, and son, Stevie, 5.
Photos courtesy of Mary Sue Cummings
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“Steve had recently joined the choir, and told the group the news at the next rehearsal,” Diane Figaro, Music Director at St. Benedict, explained. “He seemed ready to face the reality of Robbie’s death and never questioned his faith. I had a stillborn child ten years ago, so admired how he leaned on faith and asked for the prayers and support of the community.”
“They came to me right after the diagnosis,” St. Benedict Pastor, Father Steve Sallis said. “Their big question was ‘Do we need to use extraordinary means to keep Robbie alive?’
“I assured them that the church doesn’t require that,” Father Sallis said. The church does not require medical treatments and procedures when they do not offer a reasonable hope for recovery. “Then we agreed that I would be on call for them 24/7,” he said.
“All we ever wanted was to give life to our child,” Jeanne Deibert said. “That was our whole intention.”
Robbie was born after a difficult labor on May 18, 2005 with several family members and Father Sallis close by. Robbie’s eyes were wide set and his ears most likely were unable to hear. His breathing was imperceptible. Watching his skin turn purple, doctors worked on him for several minutes before finally handing him into his parents’ embrace for what appeared to be his last moments of life.
Then Jeanne’s 92 year-old great aunt, Veva Conley, spontaneously reached out and took hold of Robbie’s cold foot.
He immediately began to breathe. Father Sallis baptized him a few minutes later. In the background the doctor began to quietly sing for the baby while strumming a guitar.
“It was such a wonderful affirmation of life to everyone present,” Father Sallis said. “It witnessed to how baptism brings everlasting life, and that we allow Robbie to live a full life for as long as possible.”
In preparation for Robbie’s birth, the Deiberts contacted the Stepping Stones Perinatal Program, a service of Providence Hospice of Seattle that offers support for pre-born children with life-limiting illnesses. When Robbie returned home, hospice workers were there to help.
“They provided needs, such as a stethoscope,” Steve Deibert explained, “and taught us how to insert Robbie’s feeding tube. They helped us create mementos of Robbie’s life, and helped with funeral preparations.”
“We can’t take away the parents’ pain of losing a child,” said Maureen Horgan, program coordinator for Stepping Stones, “but we can offer support as they walk the journey. We always ask, ‘What are your hopes?’ Then we support them in that.”
Robbie’s life spanned 29 days. During that time, the rites of baptism were completed at a Sunday Mass and he received the full name Robert John Paul Karol Deibert, after his grandfathers and the late Pope John Paul II.
At his funeral, the Dieberts were surrounded by friends, family members, St. Benedict parishioners and staff from Blanchet High School, where Steve Deibert is Director of Technology.
The Deibert’s son Stevie is now 5, and Adele is 17 months. After Robbie’s story was featured recently on msnbc.com, the family began hearing from people all over the country.
Steve Deibert said, “I think the reason this story was noticed is because we shared it with so many people. There is a comfort in sharing.”
Pam Barron, a friend of the Deiberts and former St. Benedict parishioner, agreed. “For the Deiberts to share Robbie’s life with the community was a great blessing. They were out there showing the world the value of every life.”
“Whether someone is 89 or 1 month-old,” Father Sallis said, “the best thing is to be surrounded by love. Many people can’t say that. But for that little baby, the parish and so many others helped to carry this out.”