Loss Doulas Strive To Help Parents Cope With Stillbirth And Miscarriage : Shots - Health News Parents who lose a child to miscarriage or stillbirth often feel like they're going through it alone. But the experience is actually common in the U.S., and one group is trying to help them cope.

For Parents Who Have Lost A Baby, Some Help With Their Grief

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FARAI CHIDEYA, HOST:

Parents who lose a baby to miscarriage or stillbirth often feel like they're going through it alone, but the experience is actually common. About 1 in 5 pregnancies ends in a miscarriage, and every year tens of thousands of babies are stillborn. From member station KJZZ in Phoenix, Stina Sieg has this profile of one family and the woman who helped them through their loss.

(SOUNDBITE OF HEART BEATING)

STINA SIEG, BYLINE: That's Lydia Joy Ziel's heartbeat captured a few months ago on her dad Stephen Ziel's cell phone. Stephen says her heart was strong the whole time she was in the womb.

STEPHEN ZIEL: And the heart beat's not supposed to be that strong.

SIEG: Not for babies like Lydia. She was diagnosed with a rare genetic disorder called Trisomy 18 a few months after Stephen and his wife Melissa found out they were pregnant.

MELISSA ZIEL: That was probably the moment where it felt like the world kind of probably shattered on us.

SIEG: Because most babies with the disorder are either miscarried or stillborn or die shortly after birth. Melissa and Stephen didn't know how long they'd have with their baby, so they tried to make every moment of the pregnancy count. They picked out a name and started a little book documenting her first experiences.

M. ZIEL: Lydia's first snowfall. Lydia's first Thanksgiving. Lydia's first Christmas.

SIEG: And every night, they read a picture book and a Bible story to Melissa's growing belly. The couple also read everything they could find on how to deal with their grief. That included a book by Sherokee Ilse who personally knows the pain of losing a baby.

SHEROKEE ILSE: It is important to grieve and mourn these little ones to recognize that our lives are different.

SIEG: That's been Ilse's mission ever since her son Brennan was stillborn decades ago. Ilse says she briefly held him, but other than that feels she and her husband did everything wrong.

ILSE: No pictures, no mementos of any kind. We literally left with empty arms. I have nothing that he touched.

SIEG: So much deep regret, which Ilse says is still the norm for grieving parents. In the years since, she's tried to change that by writing books and training hospital staff and most recently co-founding Baby Loss Family Advisors. It's a certification program that trains professional doulas and others to help people through the death of their babies, often through miscarriage and stillbirth.

That's what Ilse did for Melissa and Stephen Ziel. Melissa says she helped them have those difficult conversations that needed to happen.

M. ZIEL: Because I think it is hard to talk about what happens if your baby does die. It's not something I think as you get married and talk about having kids and a family that this is going to happen or you're going to have to think in this direction.

SIEG: As the 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. She helped them plan for the birth, even embrace it. As Melissa puts it...

M. ZIEL: Being able to say hello and goodbye at the same time.

SIEG: So when Melissa's water broke, she and Stephen say they felt prepared. Almost a day later, Lydia was delivered. Melissa remembers listening for her baby's cry and hearing nothing.

M. ZIEL: You almost felt like you're, like - you're holding your breath waiting to figure out what was going on, what was happening.

S. ZIEL: I asked the nurse to check for a heartbeat multiple times because I thought, well, maybe it just took a minute.

SIEG: Lydia was stillborn, but she was still their baby. So with Sherokee Ilse's help, they started making all the memories they could as quickly as they could. They got footprints and handprints, took professional photographs, introduced her to their families. Melissa and Stephen spent hours and hours with Lydia trying to memorize every little part of her.

M. ZIEL: 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 (laughter). So - and definitely had his...

S. ZIEL: She looked pretty good.

M. ZIEL: (Laughter).

SIEG: They're able to laugh and smile now when they talk about Lydia because they say they have no regrets.

M. ZIEL: There can be blessings. There can be peace. There can be joy in the mix of difficult circumstances, and those are things to - no matter how hard they are - they're also things to be able to celebrate.

SIEG: Melissa and Stephen Ziel say having someone to help guide their grief made that celebration possible. For NPR News, I'm Stina Sieg in Tucson.

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