It’s OK to say their names, those babies who don’t survive birth or live for just days or months.
Their parents say they hold the memory of their babies in their hearts and hearing their babies’ names comforts them.
“We can appreciate and celebrate August exactly as he was. That’s brought us peace and comfort,” says his mother, Cara Julian-Alfaro. “There was nothing wrong with August. He was just made differently. He wasn’t broken or wrong. He was exactly the person he was meant to be. His trisomy was an integral part of him.”
Julian-Alfaro learned about three months into her pregnancy that little August had an extra chromosome, trisomy-18, which meant he likely wouldn’t survive his birth. He was born and died on July 31 at 8:01 a.m., she says.
She, like many other New Mexico parents, learned about their options and what resources were available from a perinatal hospice program run by Dr. Rebecca Moran at the University of New Mexico.
“Some people feel that if they go to hospice, they are agreeing to let their baby die, but it doesn’t mean that,” says Julian-Alfaro, a labor and delivery nurse, now living with her family in Alamogordo. “People need support through this. Death is not something we need to hide. We should all have something in place, because nobody knows when we’re going to die. Becca is wonderful. They were supportive for our entire family. We created a birth plan with our specific choices. It’s something that embraces your child and does not dismiss your child.”
Moran, medical director of the special delivery program and the neonatal palliative care program, heads a large team of professionals who counsels parents in situations like Julian-Alfaro.
Moran helps parents talk and explore what options makes sense for their families: “I believe families should have choice in everything they do. Palliative care means different things to different people. Do they want nature to take its course or do they want a C-section and have their baby born alive? I think medicine is changing. I think we can all talk more freely about death now.”
About 25 percent of all pregnancies end in loss, most of those occur as miscarriages in the first trimester of pregnancy.
Others, babies who survive past the first three months of pregnancy, have or develop “lethal anomalies,” she says. Those include babies born before 23 weeks, babies whose lungs don’t develop properly, babies with brain and heart development problems, as well as babies with other organ failure because the mother developed severe diabetes through her pregnancy. Chromosome abnormalities like trisomy-18 and others also account for some of the fatalities, but many times the reason a baby dies remains a mystery, Moran says.
“Families can choose to end a pregnancy or carry to term or anything in between when faced with a lethal anomaly. Our goal is not to judge, but to support them in achieving their goals,” says Moran, adding that her job is let them know how other families handle similar situations and help them decide what works best for their families.
Some cannot bear the idea of taking their baby home to die, while others want time with their child alone to say goodbye, she says.
Although a cesarean section, which creates more risk for the mother, isn’t recommended when the baby has a fatal diagnosis, some parents have reasons for wanting one, hoping to deliver their baby alive even for a few hours or days so their families can meet the infant. It also may be important from a religious or spiritual reason to the parents, she says.
“None of us have an agenda other than attempting to our best ability to make a horrific situation tolerable. We are the experts in this ugly piece of life – I am going to offer anything I can, anything I have been taught by previous families, learn from the mistakes I have made and think creatively to help our patients survive this terrible time.”
One thing she and the nurses in the neonatal intensive care unit have learned is that helping the family make memories with photos or preserving footprints and handprints offers comfort after the initial shock passes, Moran says.
One nonprofit, Now I Lay Me Down To Sleep, has a volunteer group of local photographers who arrive at the hospital or the family home to photograph the baby and his or her families. Families receive a memory box of these keepsakes.
“The body heals in different ways and through different senses,” Moran explains. “Having a tangible memory of your baby can help. It may sound shocking to have pictures of a dead baby, but after the shock and grief of losing your child, you may find comfort in baby pictures. To have something to touch.”
Sometimes the team’s job is just to slow everything down and let parents stay with their babies as long as they need, says Kathy Romero, a critical care nurse. “Let’s give her a bath. Let’s diaper and dress her.”
She says she hears stories from families about pain added to their grief, because no one would mention their baby: “It’s OK to cry when you talk to them. It’s OK to mention the baby by name. Their baby was a real, live human being and the family will have to deal with this death for a very long time.”