WCBE

Local Health Officials And Parents Form Standards For Families Of Stillborns

Feb 5, 2016

Columbus health professionals and parents of stillborn children have established a standardized method of care for families dealing with the death of an infant.

Mike Foley reports.

Hospice and palliative care professional Susan Wallace announces the locations of four new CuddleCots, which represent the culmination of a six-month effort to provide families of stillborn children something there never seems to be enough of in these situations --- time.

“So a cuddlecot is basically an infant cooling device designed to be used with stillborn children. It’s basically a pump and some tubing that runs cool water under the child and enables them to be kept at temperatures that are comparable to a cooling room. And It basically means that now, stillborn babies can stay with their families as long as their families want them to remain with them.”

Individual donors funded the first 7 units last fall, while a Columbus Foundation grant enabled these last four. Ten are in Columbus-area hospitals, with one in Newark. Wallace says CuddleCots help change the character of a family’s worst day and set an expectation that the hospital welcomes grieving families to take as much time as they need.  Bereaved parents Leslie Strader and Heather Johnston-Welliver agree.

“They’ll get to have the time to say hello and goodbye to their child. The space to do that is so brief. In my situation, my child had to be taken away to a cooling room periodically and it interrupted the time that I had to connect with him. And then I didn’t see him again until we were at the funeral home. So having this device, it gives you time to soak in their every feature: their beautiful faces, hold them, bathe them and then have them lay next to you and know that you’re not going to see those physical changes occur that can also be hard to witness.”

“Yeah, I think a lot of people think of a still birth as a pregnancy loss.  But it’s really an infant loss. You have a physical child. My daughter wasn’t even in the best shape when she was born and then I had to watch her get worse and worse. We were only able to spend about six hours with her. So in my whole lifetime I spent six hours with my child. She’d be 15 months soon and I already feel like her face is blurry in my mind and that’s so hard for me. I heard about someone who said as a father I’ll never dance with her on my wedding day, and he danced around the hospital room with her. Then as a parent you hear those things and think damn it, I didn’t do that. Leslie and I are still working with the hospitals to educate them as well and to be able to say, here are some options to give these parents. Because how do you think of that in the moment? So part of that is working with hospitals so that they think of these things.”

“One of the things we did with our son Dean that I’m most glad that we did was we took him to the window and showed him Ohio State University. That’s where my husband and I met and where our whole family started. You just want to create these moments and they don’t come until you have the time to have it dawn on you.”

Strader’s family includes a 2-and-a-half-year-old son, and as Johnston-Welliver says - I have three kids, but you can only see two of them.

“My daughter in the stroller there, she’s our rainbow baby which means a baby born after a loss. So she was born a little more than 11 months after her sister died. My son is going to be 3 in a couple months.  And for me, when I brought my rainbow baby home -  her name is Josephine, I could not stop thinking about what it would be like to have my three children there. My daughter who died, her name is Lydia, and my son Benjamin is obsessed with his little sister, he loves her. And all I could think of is that for a year now he was supposed to have a little sister to play with and he does have a little sister but not in the way we want him to have and so it‘s constant.  I feel like as a grieving parent, anytime I interact with other kids or parents, she’s in my mind 100 percent of the time. It’s something that for me never goes away. “

Both moms say speaking about the children no longer with them, in many ways helps keep them alive. They say most people think bringing them up in conversation will make them sad, but Strader and Johnston-Welliver say talking about them and hearing their name is a gift.

Jenn Elfner – whose daughter Greta was born still at Grant Hospital in 2004 - says even though it’s been almost 12 years, Greta and the experience are still a part of her life. She now helps other families of stillborn children.

“I’ve been a professional birth doula for the past nine years. In that time I’ve attended many births but also attended some losses. I’ve come to learn two important facts during that time. The first is that each family is unique and will have desires, values and needs that are very specific to them. The second is the more options a family has available to them, the better. They may not choose to use each and every option, but having options allows the family to navigate their birth or their loss in the best way possible for them.”

Columbus represents the first major U.S. city to have these devices in each of its labor and delivery hospitals. The goal is to advance this standard of care to hospitals across the country.