'Our biggest hurt': Hospital programs help parents grieve

CEDAR RAPIDS — Shannon Hite's living room is filled with toys and stuffed animals. They sit in brightly colored bins at the ready for her boys — Issac, 4, and Jacob, 7 weeks.

But there's one special stuffed animal at Hite's house that doesn't sit with the rest.

It's a white teddy bear.

Her husband, Brady, bought her the bear when she was in the hospital five years ago. She had just lost her first son, Elijah, after a miscarriage at 20 weeks pregnant.

'I needed something to hold,' she explained.

Losing a child before they're even born is so difficult, she said, because you are left with empty arms.

'You have nothing to hold or bring home with you,' she said. 'You have nothing to fill your heart with life and laughter. You're just stuck with pain and tears that resurface.'

Her grief is a roller coaster, she said. There are days where she's fine and days she isn't. She goes to work and she cares for her boys.

She talks with them about their older brother and looks into their eyes and tries to imagine what Elijah would look like.

'It's our biggest hurt,' Hite said.

The holidays, birthdays and anniversaries keep those feelings close to the surface.

'He would have been born in December,' she adds. 'It makes Christmas very difficult.'

Hopes and dreams

Parents who experience a pregnancy loss, stillbirth or infant death grieve a lifetime, experts said, because they're grieving for all the hopes and dreams they had for their child that will never come to be.

'It's a normal thing, when you're pregnant to think about your child's first day of kindergarten, walking a child down the aisle,' said Deb Oldakowski, maternal child education coordinator at UnityPoint Health-St. Luke's Hospital.

Oldakowski runs the Parents with Empty Arms support group, a monthly group for families grieving a pregnancy or infant loss. Shannon Hite has been part of the group since shortly after Elijah's death.

Among women who know they are pregnant, about 10 to 15 out of 100 pregnancies end in miscarriage, according to the March of Dimes, a not-for-profit that works to improve the health of babies by preventing birth defects, premature birth and infant mortality. The most recent public health data shows that in 2013, some 24,000 stillbirths were reported and another 1,500 infants died from Sudden Infant Death Syndrome, according to the Centers for Disease Control and Prevention.

And for those thousands of families, the grieving process is a long and complicated one.

'You're grieving a baby who other people don't really know,' Oldakowski said. 'People expect you to move on, but parents don't want to forget about their baby.'

During the group session, parents will talk about difficulties they had over the past month or unwittingly cruel comments friends and co-workers might have said such as, 'Isn't it time to move on?'

But most of the time, parents just want to talk about how bad they're hurting without being rushed, Oldakowski said.

'There's a void in their heart that won't be filled again,' she added.

A memorial service in the spring and around Christmastime give parents a chance to honor their babies, she said, and exercises help them deal with their grief.

For example, Oldakowski likes to bring in a basket of rocks and have parents choose one that symbolizes their grief that day. Some parents may choose a rough, black rock one meeting, she said, and then the next time will grab one that is a little smoother with more white.

Wyatt

Stillbirths are far more common than most people realize, said David Coleman, a nurse at Mercy Medical Center and a Heartprints counselor — a program that helps families cope with pregnancy and infant loss. His wife had a stillbirth in 2008, and after Wyatt died, he wanted to do something to help parents struggling with the same situation.

'It's nice to have someone who has been through it and knows how it feels,' he said.

Coleman and his family release balloons every year for Wyatt's birthday. And his younger brothers — Wesley and Emmett — know all about him.

'We lean on each other,' he said. 'My family is big ...

but not everyone has that support.'

Coleman also makes sure that fathers get the support they need, which is important as men and women grieve differently, he said, recollecting his own and his wife's experience.

'The man wants to be strong,' he said. 'I let them know it's OK to feel the way they feel.'

Mercy provides parents with educational materials about community resources and a memory box in addition to giving the fathers a prayer card and the mothers a small gold baby ring. The program has evolved over the years to become what parents need it to be, said Deb Sheldon, the Heartprints coordinator.

Whether that's listening to their regrets and anger or sending out cards and notes to families on the holidays.

'They just want somebody who remembers,' she said.

Baby Cael

Today is a hard day for Renae Black.

It would be her son Cael's second birthday.

She had untreated pre-eclampsia, a pregnancy complication that causes the mother to have high blood pressure and can do damage to the kidneys. Because of these complications, Cael was stillborn at 38 weeks.

Cael's movements had greatly decreased in the days leading up to his death, she said. so while touring the Mercy Medical Center Birthplace on Oct. 10, 2013, she had the nurse check on him.

'They couldn't find a heart beat,' she said. 'My blood pressure was very, very high, so they kept me. He was born on Friday Oct. 11.'

'When he was born it was complete silence. ...

We got to hold him, but he was very discolored because he had been gone for a few days,' she said. 'But he was beautiful.'

Her grief still is raw. It was six months before she could go into his nursery and several months after that before she could put away his clothes. That was partially out of necessity, she said, as she was pregnant with Cael's little sister, Sally.

Last year on his birthday, Black went to Iowa City and sat below the Black Angel statue in Oakland Cemetery and wept.

She attends Oldakowski's support group and does yoga to cope. The group has helped her tremendously, she said, because it's a safe place to share.

'Strangers sit there, and they weep with you because they know,' she said.

Black and her husband, Garrett, also have worked with Mercy Heartprints staff to create the Baby Cael fund, which provides support and resources to other families dealing with infant loss, including a food cart for families, keepsakes and a mobile cooling device, which slows decomposition of the baby and allows parents to spend more time with their child to say goodbye.

The device will be stored at Mercy but will be used at both Cedar Rapids hospitals.

This year the Baby Cael fund also has added a professional photographer to its services — photographs hold a special place in Black's heart. The nurses took photos of Cael after his birth, which Black now keeps in an album and in frames around her home.

'Pictures are the only thing you get to have,' she said.

Remembrances and support groups

Thursday, Oct. 15, will mark Pregnancy and Infant Loss Remembrance Day, to honor and remember infants who died in a miscarriage or stillbirth as well as the deaths of a newborns. The day is observed with ceremonies and candle-lighting vigils, concluding with the International Wave of Light, a worldwide lighting of candles at 7 p.m. in each time zone. There are several events are taking place in the Corridor.

• Candle Lighting and Remembrance Event, 6:30 p.m. on Thursday, Oct. 15 at Noelridge Park, Elmhurst Drive NE, Cedar Rapids

• Wave of Light, 6:30 p.m. on Thursday, Oct. 15 at Kava House and Cafe, 122 Second St. SE, Swisher. RSVP to Lindsay Felty, lindsayfelty@yahoo.com

Support groups

• Parents with Empty Arms support group, 6:30 to 8 p.m., the third Monday of each month, UnityPoint Health-St. Luke's Resource Center, 225 12th St. NE., Cedar Rapids. Preregistration is not necessary. For more information call (319) 369-7580.

• Iowa City Moms Blog Pregnancy and Infant Loss Support group, 6:30 p.m., Monday, Oct. 19 at Tierra Coffee, 1150 Fifth St., Coralville.