Supporting parents when newborns die: 'Bereavement care is really evolving'

The technologist moved the ultrasound wand over Kristin Blouch's abdomen, but could not find the heartbeat of her 5-month-old fetus.

Kristin and her husband, Chris, tried not to panic. Just the night before, they had watched her belly bounce with their son's acrobatics. But it soon became clear that the unthinkable, however inexplicable, had happened.

Chase Robert, their third child, was stillborn on Feb. 17, 2015.

"We had great nurses, which was fortunate. And the grief counselor guided us," Kristin recalled of the staff at Holy Redeemer Hospital in Meadowbrook. "She said we could give Chase a bath. She had a little outfit for him and took pictures."

Even so, the Northeast Philadelphia couple wished in retrospect that the 12 hours they spent with their son – the only time they would ever spend with him – had been fuller, and longer.

"We got all this paperwork about the funeral and who to call, but nothing telling us: This is your only day with Chase, and you might want to think about the memories you want to make," said Kristin, a laboratory manager at the University of Pennsylvania.

She and her husband, a geography information systems specialist, have channeled their heartache and regrets into a nonprofit, A Day with Chase, dedicated to helping parents navigate the shattering experience of losing an infant. Among other things, the foundation raises money to provide hospitals with a CuddleCot, a $3,000 crib-cooling device that preserves the bodies of deceased newborns so their families can take a few days — sometimes longer — to have close contact. Three hospitals have been beneficiaries so far.

Although the notion of the CuddleCot may sound macabre to some people, it reflects a profound change in the attitudes of hospitals, bereavement experts, and patients. No longer are babies whisked away to the morgue right after death. No longer are grief-stricken parents denied the chance to bond with their offspring.

"In the past few decades, increased awareness and sensitivity to the special needs of newly bereaved parents have changed hospital-based intervention — from shielding parents from the death of their baby to supporting them through the experience," explains the Pregnancy Loss and Infant Death Alliance, a 15-year-old coalition of medical professionals and parent advocates.

Recently, social media have enabled families such as the Blouches to cement this change. Their organizations supplement hospital services with everything from bereavement accoutrements — baby gowns, crocheted blankets, foot and hand print kits, children's books — to funeral subsidies and photography. Helping others, they say, gives meaning to an isolating trauma.

"I'm not saying this movement is new, but there seems to be a new wave,"  said Samuelson,  of Pine Hill, Camden County.

In some ways, the new wave harks back to the mid-19th century, when grieving mothers were legion and the fledgling field of photography lessened their suffering with a memento mori — a memorial portrait of the absent dear one. Babies were often posed in elaborate christening gowns, ornate coffins, or their mothers' arms.

The popularity of postmortem photography faded in the early 20th century, partly because of falling infant mortality rates, wrote Kelly Christian, a Chicago researcher and artist, in an article about the phenomenon: "Shifting away from Victorian ideals surrounding death, dying became medicalized and professionalized."

Today, the loss of a baby late in pregnancy or soon after birth is unusual, but not as uncommon as you might think. In 2013, there were 23,595 stillbirths (fetal death at 20 weeks or more) and 12,900 newborn deaths (less than a week old), federal data show.

Yet as late at the 1970s, hospitals discouraged or even barred parents from seeing the dead baby, according to the Pregnancy Loss and Infant Death Alliance.

"Our society's attitude toward dying and death is that it's this icky thing that's creepy and disgusting." said Deborah L. Davis, a Denver developmental psychologist and author of Empty Cradle, Broken Heart: Surviving the Death of Your Baby.

Jane Cavanaugh, a neonatal intensive-care nurse at Thomas Jefferson University Hospital for more than 40 years, remembers being trained that prompt removal of the corpse was both compassionate and conscientious.

"Pretty much within an hour, the baby was taken to the morgue," she said. "The family was in shock."

Today, in contrast, standard practice is to offer parents the chance to spend time with their infant, then defer to their wishes, without judgment or bias.

"Each family is different. Some just want a few moments. Others can't bear letting the baby go until they go home," said Sandra Wancio, a maternity unit nurse at Abington Memorial Hospital.

Still other parents want contact, but are apprehensive because their newborn's body has abnormalities, is underdeveloped, or has begun to deteriorate because fetal death occurred some time before the stillbirth.

"Our staff do a wonderful job of preparing the parents for what the baby looks like. This way, the families aren't shocked," said nurse Susan McAndrews, the perinatal bereavement facilitator at Main Line Health's four hospitals. "Preparing and offering support is so important."

The 2011 advent of the CuddleCot, developed by the British company Flexmort, has raised the question of whether the baby's body must be cooled to remain with the parents for an extended period. Maternity stays range from one to three days or even longer, depending on the type of delivery and whether the woman has complications.

The CuddleCot, which comes packed in a picnic-cooler-size trunk, cycles chilled water through hoses connected to a cooling cushion that is placed in a bassinet, Moses basket, or crib.

Resolve Through Sharing, a Wisconsin-based nonprofit that is a leader in bereavement care training, says cooling is "rarely" necessary to keep a baby with parents.

In any case, the CuddleCot is becoming a staple of bereavement support. In the United Kingdom, it is available in 92 percent of maternity wards, as well as pediatric hospice facilities, according to Flexmort.

About 400 U.S. maternity units have the system, including many in the Philadelphia area.

"Chase was born early in the morning and had started to change by that night," Kristin Blouch recalled. "I wish we'd had a CuddleCot. It would have helped us."

The Blouches' foundation has given cots to Abington, Jefferson, and Doylestown Hospitals. A family donated cots to all four Main Line hospitals. A group of mothers donated a cot to Redeemer.

Redeemer and Abington have since set aside rooms exclusively for the use of grieving parents.

"We call it the 'the gift of time' room," said Ellen Taylor, Redeemer's maternity nurse manager. "Bereavement care is really evolving."