When Life is too Short

by Kate Vanskike Smith

When we begin the journey of parenthood, we have this innate sense that our greatest responsibility is to make sure our children experience full, happy and long lives.

“You have limited time
... use it however
its most meaningful."

—Heather Roberts, RN

So when a child or baby’s life is cut drastically short, the devastation can seem insurmountable. It’s more than an ordinary loss—it’s unfair, unthinkable, wrong.

At Sacred Heart Medical Center & Children’s Hospital, nurses and other specialists are learning to approach the care of families facing chronic illness and death in a way that allows parents to grieve and celebrate at the same time.

Called “palliative care,” this extra support makes the burdens at least a little easier to bear.

The Forget-Me-Nots
At Sacred Heart’s Women’s Health Center, seasoned Birth Place nurses help deliver more than 2,500 babies a year. Fortunately, the majority of babies are born healthy, to parents who look forward to a life of adventures with them. But there are also plenty of moms who learn during pregnancy that their babies are going to face major challenges or an early death—maybe even death inside the womb.

Heather Roberts A nurse
who can relate

For Heather Roberts, RN, coordinator of the Forget-Me-Not perinatal supportive care program, dealing with infant loss is not just a clinical service—it’s a personal experience.

Back in the 1970s, Heather’s mother had an emergency Cesarean section after an Xray showed the baby’s brain was malformed and the face disfigured. Heather’s mother was sedated for several days while the baby was kept in a nursery. He died at just 5 days old, having never been held or kissed by his mother … and she never had a single memory of him, other than a simple grave marker.

Heather herself eventually had two healthy baby boys. In 1999, however, when she was just 13 weeks into her third pregnancy, she asked for an ultrasound exam and found the baby had very little brain development and would not live.

Her fourth pregnancy delivered a seemingly healthy baby girl, who, at 2 years old, was diagnosed with brain development problems. Since then, Heather has learned she has a 50/50 chance of having babies with physical deformities or abnormalities; there is a high likelihood that her children will face the same situations and decisions she has encountered.

“It’s comforting to know that if and when they face those decisions, there will be so much more support in place to help them.”

Whether Heather shares her own personal experience with other grieving moms depends on the situation. “It’s not about me — it’s about them,” says Heather.

But she recently tended to a family whose baby had the same condition her own baby girl had, and sharing the experience was a mutual gift.

“I was so happy to hold their baby because I didn’t get to hold mine,” Heather remembers. “The baby had a pretty shocking appearance and the parents were so hesitant … I just wanted to remind them it was okay to hold her and love her.”

Heather’s personal experience is helpful to the Women’s Health Center staff as well. She uses her story to help break down the “us / them” barrier that often separates caregivers from patients.

“Sometimes, ‘we’ are ‘them’,” she says.

And while maternity care has been available for as long as we can remember, only in recent years has the field of medicine realized that care to pregnant women who are grieving incredible loss has been missing the mark.

Thankfully, palliative care concepts are expanding into maternity units like the Birth Place and staff members are opening up to a whole new style of care … where patients don’t have to hide their grief, mothers are allowed more choices and parents are encouraged to treat their unborn children as real members of the family.

Heather Roberts, RN, coordinator of Sacred Heart’s Forget-Me-Not supportive care program, understands the many complexities facing mothers pregnant with babies who cannot live. Just 15 weeks into one pregnancy, she lost a baby. Another pregnancy delivered a baby with brain abnormalities; plus, her two sons carry a 50-50 chance of passing on debilitating traits to their children. She is all too familiar with the challenges and struggles parents may face—and even more so with the options today’s parents have to make the journey easier.

Unlike parents of decades past, today’s families aren’t left feeling abandoned by the health care system. Instead, they’re given choices, like whether to hold their baby so they can feel like they were able to parent the child, however briefly.

“They need to be fully aware of all the options and know that whatever path they choose, we’ll walk the road with them,” says Heather. “How a family deals with a child’s short life ultimately may affect how they deal with their marriage, their other children and many other situations in life,” adds Heather.

“I tell my families, ‘You have a limited amount of time; use it however it’s most meaningful for you.’” Memory making is an important part of the Forget-Me-Not program.

Staff members help parents feel like they are still taking something special home with them, whether it’s a lock of hair or footprints or professional photos.

Tricia and Brian Frey of Coeur d’Alene, Idaho say they are forever grateful they had the opportunity to do those things for Baby Eden. Eden, who was born in March with Trisomy 18 (a chromosomal abnormality), died after just 10 short days.

Brian and Tricia Frey were encouraged
to celebrate baby Eden's short life

“When Eden was born, we didn’t know how long we would have with her,” says Tricia. “Our main focus was simply spending time with her; memorizing her tiny features, stroking her fuzzy head, and holding her whenever we got the chance.”

She says it was evident the people who developed the Forget-Me-Not program had exactly that in mind.

Sacred Heart’s music thanatologist—a harpist who is trained in playing music for people who are ill—visited Eden’s room several times to offer a soothing background while Tricia and Brian took turns holding her.

“It helped us to forget the monitors and tubes all around us,” Brian shares.

In addition to music making for “sweeter times with Eden,” they say the Forget-Me-Not program meant so much to them because of the people it brought to their sides.

“Simply providing a service can be a good thing, but if it’s done merely as a job, then we would rather be left alone,” Brian says. “The photographer, the coordinator, the harpist … each one was sensitive to us, respectful to our daughter, and conveyed caring and compassion through their words, attitudes and actions.”

Tricia adds, “Their work is not simply a job, but a ministry. It was a blessing to us.”