By Dave Andrusko
What are the odds that a large “mainstream” newspaper would ever carry a story even marginally sympathetic to the growing perinatal hospice movement? If you would have asked me prior to yesterday, I would have said, “zero.”
And then I read, “Perinatal hospice care prepares parents for the end, at life’s beginning,” by the Washington Post’s Danielle Paquette.
Because such coverage is like finding a needle in a haystack, I don’t want to dwell on the obvious flaws. There are parts in the story where the average reader would think (as Paquette suggests more than once) that this deeply humane movement is little more than a “political tool,” rather than a way of helping parents deal with soul-wrenching reality that a child they deeply want will die in utero or likely within hours or days after birth.
She uses the occasion to beat up on a recent Indiana law that does no more than require the state health department to create brochures about the service
But whatever Paquette’s personal biases may be, the importance of perinatal hospice in the cases of “nonviable pregnancies” clearly shines through in ways that are impossible to miss. It begins with acknowledging that there is a “flourishing community” of parents connected online.
She notes that a woman or a couple may be “pro-choice” but find abhorrent (or at least be “uncomfortable” with) the idea of aborting their child just because he or she likely will not live long after birth. Indeed, one of the primary stories is about just such a couple (naturally Catholic), struggling with just such a diagnosis.
The mother, after learning their baby’s prognosis first declined to hear a recording of her baby’s [“fetus’s”] heartbeat, then changed her mind and placed it inside a Teddy Bear. Paquette writes
Her husband, who is also Catholic, wasn’t comfortable making the call [to abort], either. She figured that was a sign. “Somehow,” she said, “I knew abortion just wasn’t the right choice for me.”
So, Warner went to support groups and routine checkups. She found a photographer, invited her extended family to the hospital on her due date and arranged for a grave site in Quantico, Va.
When the fetus’s heartbeat started to slow at 34 weeks, Warner’s doctor suggested a Caesarean section. That would give them the best chance to meet her.
Erin died in her dad’s arms. She was 27 minutes old.
The “care model” for perinatal hospice is
a bundle of services, untethered to a hospital or medical center. Hospice nurses and social workers help families prepare for loss, coaching parents on what to say to siblings and co-workers. They take calls at 2 a.m. They recommend family therapists for couples whose relationships strain under grief. They teach mothers how to deliver painkillers to a dying infant, should the baby live long enough to go home.
The story’s key caregiver is a nurse in Virginia who operates her program at Mary Washington Hospital, not 30 miles from where we live. Tammy Ruiz Ziegler emphasized that the program is not “connected to religion” [whatever that means].
Ruiz Ziegler has met parents from both sides of the ideological aisle who have decided to continue nonviable pregnancies. Some feel it helps them grieve, she said. Some want to know they’ve done everything they could.
“Eleven years ago, when I first brought this idea up to physicians, they stared back at me like there was something genuinely wrong with me,” Ruiz Ziegler said. “Today those same doctors are my staunchest supporters.”
They’re acknowledging a demand for an alternative to abortion for women carrying nonviable fetuses, a need that previously received little attention, she said.
Eight years later, Warner, now 46, cherishes the memory of her birth. She remembers it as joyful, as though the first wave of grief prepared her for the baby’s last minutes in the delivery room.
There are so many beautiful stories that I want you to read for yourself at beginning that I will talk about only one more.
Paquette’s final example is Natalie Wilson who “was 21 weeks pregnant [when] she learned her baby’s heart would fail.” She didn’t want her baby’s life to end on an operating table and wasn’t “comfortable” with abortion.
A nurse herself, she had been around sick babies most of her career. She knew
that, as a parent, she could influence how, exactly, her newborn’s life would end. She wanted it to be gentle — a death surrounded by loved ones. She has since become a perinatal hospice nurse.
The story of fighting to carry Liam long enough to deliver him alive is incredibly inspirational. Liam
was born that April crying, with fingers spread open. His extended family gathered at the hospital, passing him around.
The next day, unsure of how long Liam’s heart would keep beating, Wilson wrapped him in a blue-striped blanket and took him home. She stayed up all night with her husband, Alan, taking turns rocking the baby. She listened through a stethoscope to his heart.
Just 49-and-a-half hours after Liam’s birth, the beat started to slow. Wilson called Gavin [Liam’s 4-year-old brother] into the bedroom. She handed the baby to Alan, who cradled Liam in his outstretched forearms. The infant’s feet touched his dad’s stomach. They all huddled close on a king-sized bed, rubbing his arms and legs and belly, saying, “We love you. We love you.”
Liam seemed to look at his family — each of them, individually, Wilson recalls. Then he shut his eyes.