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Loss Doulas Help Parents Cope With Infant Death

Lydia's crib
(Photo by Stina Sieg - KJZZ)
Miscarriage and stillbirth are common, but often parents feel like they're walking through the experience alone. Baby Loss Doulas and Advisors can help. Above is Lydia Ziel's crib. She was diagnosed with a serious disease while still in the womb.

Lydia Joy Ziel’s heartbeat was loud in the womb, and that gave her parents comfort every time they listened in through machines at the hospital. Her dad, Stephen Ziel, smiled as he played a recording he’d made on his phone.  

“And the heartbeat’s not supposed to be that strong,” he said.

Not for babies like Lydia. Long before Lydia was due, Stephen and his wife Melissa found out their baby had a rare genetic disorder called Trisomy 18, which can lead to physical and mental abnormalities. 

Melissa said the vast majority of babies who have it die within days or hours of their birth, or even in utero.

“That was probably the moment where it felt like the world kind of probably shattered on us,” she said.

Then they met Sherokee Ilse.

“I call myself a paradigm shifter,” Ilse said.

For nearly 35 years, Ilse has been trying to change how our culture deals with the loss of babies, which is more common than people know, Ilse said. The Centers for Disease Control and Prevention says nearly one in five U.S. pregnancies end in miscarriage, and another 25,000 babies are stillborn every year, and that doesn’t include the babies who die from Sudden Infant Death Syndrome. Still, Ilses knows that many parents who go through this often feel alone – and worse.

“I bet almost 100 percent of women who have a miscarriage or a later infant death feel a sense of guilt and shame and blame, at some point,” Ilse said.

So she’s written books, trained hospital staff, and most recently co-founded a program called Loss Doulas International and Baby Loss Advisors. Doulas are traditional caregivers who typically help with live births, while loss doulas are specifically trained to deal with a death of a baby. Both these advisors and doulas are trained to walk parents through the loss of a child, regardless of whether that child was a year old or six weeks in utero. 

“It’s important to grieve and mourn these little ones,” Ilse said. “To recognize that our lives are different.”

That includes hers. Ilse began this work after her son Brennan was stillborn in the early 1980s. That was back in the “dark ages” as she calls it, a time when dead babies were often whisked away by nurses, maybe not even shown to their parents. 

But Ilse was “lucky,” she said, because she briefly held Brennan. Other than that, she believes she and her husband did everything wrong. 

“No pictures, no mementos of any kind,” she said. “We literally left with empty arms. I have nothing that he touched.”

They had so much deep regret. Ilse knew then she wanted to save other parents from it, parents like Stephen and Melissa Ziel. As their baby Lydia’s due date got closer, they spoke with Ilse many times over the phone, and in person, since they all live within miles of one another in Tucson. 

Ilse helped them cherish the pregnancy, Melissa said, and also plan for the birth, even if the outcome was the worst. 

As Melissa put it: “being able to say hello and goodbye at the same time.”

So when Melissa’s water broke, she and Stephen said they felt prepared. Almost a day later, Lydia was delivered – in silence.

“It almost felt you were holding your breath, waiting to figure out what was going on, what was happening,” Melissa said. 

Stephen, who had been so sure Lydia would make it, asked the nurse to check for a heartbeat multiple times “because I thought, ‘well maybe it just took a minute,’” he said.

That was not the case.

Lydia was stillborn. But she was still their baby, so with Sherokee Ilse’s help, they set about to make all the memories of her  they could. They got footprints and handprints, took professional photographs, introduced her to their families. Melissa said they spent hours and hours with Lydia, trying, like Ilse had suggested, to memorize every little part of her.

“You know, look at her eyes, see if she has any birthmarks. Who does she look most like? And we all agreed she looked more like Steve,” Melissa said, laughing.

“She looked pretty good,” Stephen said, chuckling, as well.

Maybe why they’re able laugh now is because they both say they have no regrets.

“There can be blessings. There can be peace. There can be joy in the mix of difficult circumstances,” Melissa said, “And those are things to, no matter how hard they are, they’re all things to be able celebrate.”

And having someone like Ilse by their side made that celebration possible, she added. 

So far, Ilse has helped train about 50 other loss advisors and doulas across the country. 

To find a Loss Doula or Baby Loss Advisor, or to find out how to become one, visit www.babylossfamilyadvisors.org. For more information on coping with the loss of a baby, visit www.BabiesRemembered.org. 

Stina Sieg was a senior field correspondent at KJZZ from 2013 to 2018.