Helping Stillbirth Families When No One Wants to Address It

By Michael Gold

One of the worst things about stillbirths, besides the obvious, is that no one wants to talk about it.

Rachel Krause wants to talk about it.

“It’s a club no one wants to belong to,” she said, even though every year about 7,000 women in New York State suffer a stillbirth.

Krause, a teacher, who had a stillbirth in 2022, is doing advocacy work with PUSH for Empowered Pregnancy, Momma’s Voices and other support groups to help stillbirth families navigate the mental, physical and financial issues confronting them.

Krause likened the problem to “soldiers coming back home from the war. We’re not supposed to talk about it, just rejoin society.”

Krause described the hollow feelings a stillbirth mom can experience.

“After the baby loses its heartbeat, everybody is freaked out,” she said. “In the hospital, you hear all the babies crying.” Then, “you go home without a birth certificate. Your milk is coming in. You see the nursery, all the baby clothes you bought. You planned your finances around your (maternity) leave.”

A friend of hers, who had a stillbirth, told Krause, “She didn’t want to live anymore. She could not go back to work for at least a year, because of mental health issues. You do have a bond with your baby. A loss is a loss.”

In her support groups, stillbirth moms have reported issues accessing their records, which they want to try to understand what happened. Some mothers said the hospital told her they’ve lost their records.

“They talk about how they lose their friends,” Krause continued. “People don’t know what to say. It’s hard to be around that.”

Additionally, stillbirth moms can suffer various health issues.

“I almost died twice. I had a pulmonary embolism,” Krause said, possibly caused both by being pregnant, from the surgeries required to save her life and blood transfusions delivering the placenta.

Other health threats that can arise for stillbirth moms are postpartum hemorrhage, unstable heart rates, infections, blood clots and preeclampsia, which can cause fevers, spiking blood pressure and kidney damage, all of which require the women to return to the hospital.

“These can kill moms unless they get help and fast,” Krause wrote in an e-mail after our interview.

Then there are also financial challenges. A stillbirth mom loses her paid family leave under New York State law. They can go on temporary disability, which provides much less money.

“Paid family leave grants up to $1,150 a week. Temporary disability is a meager $170 a week,” Krause explained. “Paid family leave in New York is revoked for stillbirth moms, even when the baby dies shortly after birth.”

PUSH for Empowered Pregnancy is working to try to change that, with numerous visits to Albany lawmakers. Krause reported that the legislature and governor are discussing how to include temporary disability reform.

“These proposed reforms would garner the equivalent of Paid Family Leave (PFL), but TDI (temporary disability insurance) hasn’t changed since the 1980s,” Krause wrote. “While waiting for reform, we hope lawmakers will allow moms to retain their PFL after birth, regardless of whether their baby lives.”

Stillbirth mothers are “almost five times more likely to experience life-threatening maternal complications,” according to data from PUSH for Empowered Pregnancy and “twice as likely to be black. As we know, black moms are already 3.5 times more likely to lose their lives after pregnancy/childbirth in New York State, with a staggering nine times higher in NYC,” PUSH states.

“This is a reproductive justice issue. Prenatal and postnatal care are especially lacking for black women,” Krause wrote.

Krause explained the need for support for stillbirth moms.

“Stillbirth moms need to find each other locally and share their experiences with each other and their hospitals, for outcomes to change,” she stated.

The Examiner interviewed Krause last year, about the trouble she had with getting her medical records from Optum and Optum’s subsequent termination of her as a patient. Despite the terrible events she experienced, both of her stillbirth and trouble with Optum, I found her to be a woman full of resilience and courage.

She shared something she wrote about her loss.

“I learned then, that as despair deepens, hope rises somewhere else…you can construct meaning from the senseless cruelty of bad luck…However, saying, ‘everything happens for a reason’ to a mom who lost a child, is like saying that there is an all-knowing guide setting death traps to teach us something…That’s not to say I don’t believe in a higher power. I just don’t think it is intent on punishing or rewarding us to reveal a singular true meaning. And if anything can be distilled to one true meaning, I’d choose love.”

Stillbirth moms seeking support can learn through PUSH for Empowered Pregnancy. Visit at https://www.pushpregnancy.org.

Michael Gold has had articles published in the New York Daily News, the Albany Times Union, the Hartford Courant and other newspapers, and The Hardy Society Journal, a British literary publication.