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Infant Loss Around Kansas City Continues At Near Regular Rate During Pandemic, But Grieving Is More Challenging

The contents of a memory box given to bereft parents at AdventHealth.
The contents of a memory box given to bereft parents at AdventHealth.

Studies on infant mortality during the pandemic are still incomplete, but an area infant bereavement specialist says they're about the same as a typical year's losses—it's the grieving that's been more challenging.

Tricia Rausch’s life is organized around unexpected loss. Her fourth child was stillborn almost 14 years ago, and not long after that, she threw herself into helping other mothers facing the same unthinkable situation.

She’s a nurse at AdventHealth Shawnee Mission, formerly Shawnee Mission Medical Center, and occupies the only fulltime position in the Kansas City metro dedicated to perinatal bereavement and post-partum emotional support.

In this era, which is defined by unexpected losses of all kinds, Rausch says that while the work she’s doing has remained the same, her patients’ challenges are greater. She says it’s hard watching bereft parents unable to wrap themselves in the support of their families and friends, church communities, and coworkers.

“Most people when they grieve describe it as feeling very alone even if they’re surrounded by people,” Rausch says. “But this year, for people who’ve had losses, babies or adults in their lives, it has been extra isolating because you’re not able to get out to those support places that you were before.”

Tricia Rausch is the only nurse in the metro 100% dedicated to perinatal bereavement and post-partum emotional support.
Tricia Rausch is the only nurse in the metro 100% dedicated to perinatal bereavement and post-partum emotional support.

Like other healthcare providers, she’s concerned that the mask and shield that obscure her face, and the mandate that keeps her from holding a hand or offering a hug, are hindering her from making as great a difference as she normally would.

All the same, the mother of five surviving children, ages 8 through 20, is on call 24 hours a day, seven days a week, at the ready to help women who’ve lost a baby in any stage of gestation from early miscarriages through full term.

Kaley Hull, a mother in Shawnee, met Rausch when she lost a baby.

Two years ago, Hull and her toddler son went to a regularly scheduled ultrasound to check on the baby that was to have been her fourth child. She was about a month from delivery.

The ultrasound tech couldn’t find a heartbeat.

Hull says she remembers thinking: “This isn’t something that happens. After that (first) 12 weeks you’re supposed to be fine; nothing is supposed to happen.”

Later, staff in the delivery room saw that the umbilical cord had made three or four tight loops around the baby’s neck. Rausch and her team guided the Hulls through deciding burial arrangements and collected items they knew would comfort the parents later — whether they wanted them or not.

For instance, a visit from a photographer is routine. Rausch says that when she lost her son, she was not interested in photos at all.

“I think my husband and I both said no at least three times, and a nurse kept saying, 'Okay, well, they’ll be here at 1:30 to take the pictures.' I kept thinking, why is she not listening?” Rausch recalls.

She says that she was probably home for 12 hours when she called to request a copy of the photos she’d initially refused.

Ireland Rae Hull was stillborn in 2018 to Kaley and Troy Hull.
Anne Learned
Ireland Rae Hull was stillborn in 2018 to Kaley and Troy Hull.

“As soon as you aren’t holding them, that’s what you’re craving, is everything on this earth that’s a reminder of them,” Rausch explains.

It was this experience that drew her to work at Advent after a break from nursing when her oldest children were little. The nursing staff in labor and delivery knew about her loss, and went to her for help when a delivering mother lost her baby.

For a while Rausch focused on those mothers part time. But before long the work developed into a fulltime position that now includes training other staff members and overseeing continuity of care so all grieving mothers receive the same treatment, regardless of when they deliver or who’s working at the time.

In a typical year, Advent delivers more than 5,000 babies, which include roughly 60 infant losses. Rausch says infant deaths before 20 weeks gestation are not reported to the state, nor are deaths that occur after a baby has been discharged from the hospital.

Rausch says that in March and April of last year the hospital saw a slight increase in infant mortality, but they couldn’t assign a clear cause. Since then, rates have returned to normal, though in mid-December the birth rate increased — the quarantine baby boom. Infant mortality increases proportionately with an increase in birth rates, so she says they’re likely to see more in the coming months.

The March of Dimes and Centers for Disease Control have issued their 2020 infant mortality reports, but they’re based on 2019 data. Early research suggests women with COVID-19 are more likely to deliver prematurely, which increases the likelihood of complications. Other than that, their experience isn’t expected to be much different from someone who’s healthy.

Now, months into the pandemic, a typical delivery experience at the hospital is no longer dramatically different from healthier years — although fewer visitors are allowed in the room at the same time.

Hull delivered a healthy baby girl in May and says she couldn’t help but think about those who are experiencing a loss like the one she had two years ago. “I can’t imagine having to do that now,” she says.

Ireland's baptism ceremony.
Anne Learned
Ireland's baptism ceremony.

When she lost the daughter she named Ireland, her people rushed to her. Her minister came to the hospital room to baptize the baby. Hull immediately began attending support group meetings — which she’s continued — and bonded with other women who’d had similar experiences.

Now, those meetings take place on Zoom. Hull isn’t sure if she’d have made the same connections with the other women if she hadn’t begun by sitting shoulder to shoulder with them.

“You get such great friendships from not only the hospital, but the support group," she says. "If anything positive and amazing came out of it, I would say it would be those friendships and just the knowledge and support I got from it.”

Having the support of those particular women also eases the difficulty of what Hull thinks of as a stigma around infant death. She says a lot of people are so uncomfortable with the idea that they don’t want to talk about it; she says they want to act like it didn’t happen.

She'd like people to know that often parents do want to talk about the baby. “Ask me ‘what was she like?’” Hull says. “‘Did she have brown hair?’ There are certain things the baby is like in utero. Like, she loved country. It would just get her going.”

Hull says she wants to say the baby’s name and hear others say it — grieving a baby is no different from grieving any other family member.

Anne Kniggendorf is a staff writer/editor at the Kansas City Public Library and freelance contributor to KCUR. She is the author of "Secret Kansas City."
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