When a baby is given a prenatal diagnosis of a life-limiting illness, providers often suggest termination. That isn't always what parents want.
Over a decade ago, Amy Kuebelbeck -- book author, freelance writer, and former reporter for the Associated Press -- was nearly 6 months into pregnancy when she learned that her baby would be born with a fatal heart condition.
In 1999, the concept of bringing a baby with a fatal illness to term wasn't well recognized. Still, Kuebelbeck knew it was a legal option.
"We really created a perinatal hospice experience by the seat of our pants, without ever having heard the term," she said. In the last 15 years, the practice has grown exponentially. On Monday, she added the 240th listing to the international roster of perinatal hospice and palliative care programs she maintains at perinatalhospice.org.
Kuebelbeck is the author of two books about perinatal hospice. "Waiting with Gabriel: A Story of Cherishing a Baby's Brief Life," and "A Gift of Time: Continuing Your Pregnancy, When Your Baby's Life Is Expected To Be Brief."
For her second book, Kuebelbeck and her co-author Deborah Davis, PhD, a psychologist, interviewed or received written narratives from more than 100 families.
Also, physicians are doers and problem solvers. "Waiting doesn't feel much like doing," she said, but it is. "Waiting can be a profound and healing form of doing."
One of the things that Kuebelbeck learned through her own experience is that hospitals don't need an entire care team for a family to feel supported. In her case, a single nurse shepherded her family through that period.
"The most important thing she did for us was that she affirmed that we still had a profound opportunity to parent our baby, that even through our time was going to be short that we could make tremendous memories during that time," Kuebelbeck told MedPage Today.
Annette Klein, RN, who works in parent education and support at United Hospital in St. Paul, Minn., is the nurse who guided Kuebelbeck through this traumatic time.
Kuebelbeck took Klein's advice to heart. She and her husband brought their son, still in the womb, to a baseball game -- even though Kuebelbeck hates baseball. They took him fishing, swimming, and to concerts. "We consciously thought of it as our summer with Gabriel," she said.Years later, she met other families who understood her approach, who recognized "that's your time with your baby, it might be your only time."
The second most critical thing that Klein told Kuebelbeck was none of the families she met regretted continuing their pregnancies despite their child's fatal illness. Having her decision validated meant a lot to Kuebelbeck at the time.
Klein also helped Kuebelbeck create a birth plan. Klein arranged a conference with the caregivers involved and together they discussed "what might happen and what they hoped would happen," Kuebelbeck said.
For Kuebelbeck, these plans included photographs to memorialize the birth. She also wanted the baby to be baptized.
Klein told MedPage Today that Kuebelbeck's family was the first family that she had guided through perinatal hospice, however informal it was. Before that time, providers didn't realize that photos might be important or that a mother could still hold her baby, she said.
Since that time, Klein has helped dozens of families and provider teams through this healing experience.
One father told Klein he dreamed of having his son outside with him in nature to "feel the sun on his face." Because Klein spoke with the team in advance and let them know that certain rules and regulations were no longer important, the father got his wish. Once the mother was stable, they wheeled her and the baby out into the hospital's garden for close to an hour, she said.
"That was very meaningful to that father," Klein said.
Klein saw Kuebelbeck's own experience as "just a beautiful, beautiful birth and death." Kuebelbeck, her husband, her parents, and her daughters were all there to support her. Asked what she remembers, she said, "I remember love."
Nothing is more uncomfortable than talking about dying, and a dying baby is even worse, said Kuebelbeck.
"It seems so frightening and so overwhelmingly sad that people don't want to talk about it, but sadly it happens, and parents need support when it does."
Providers need to be conscious of their language choices. Parents are very aware of "shifts in terminology" -- for example, using the word "fetus" the moment a problem is discovered.
If parents have chosen a name for the baby, Kuebelbeck said, providers should use it.
Klein said, over the years, she has learned that parents' first instinct when their child is given a fatal diagnosis is a "head in the sand" response. They think blocking out the problem will make it easier and the fewer memories they have the better.
But she's found the opposite to be true. Mothers who chose to embrace their baby as present in their life could say, "She only lived for a short time or she only lived inside of me, but I was really a good mom."
Providers should allow families 24 hours or even a few days before they decide what to do about a prenatal diagnosis.
Memory-making is also incredibly important, said Klein.
She reminds patients that even in the womb, the baby can hear. She suggests parents read books, talk to their babies, and let their other children know they can talk to the baby too.