Nonprofit Helps Parents Cope with Loss of a Child

Photos by Lizzy Yates

No child was ever born into more love than Ellie Gray Rose of Little Rock.

Her parents, Chris and Hannah (Sokora) Rose, had been in love with the promise of her for decades. Hannah recalled falling for Chris in third grade at Our Lady of the Holy Souls Catholic School, in Little Rock, an attraction that did not fade like the crushes and puppy loves her classmates experienced. The connection was strong enough to lie dormant until the pair rediscovered each other after both had grown and begun their careers, his as a coach and teacher at Catholic High School for Boys and hers as a neonatal intensive care unit nurse at the University of Arkansas for Medical Sciences. The two would marry in 2019, bringing them one step closer to their prayed-for firstborn.

Ellie — or, more precisely, the family the two had dreamed about, of which she would be the eldest — was never far from the couple’s vision of themselves and their future. When it was discovered they were expecting, their effervescent joy took second only to the gnawing anticipation of delivery day and the impatience they felt to finally meet her in person.

Then, in an instant, the dream that time and distance could not diminish shattered.

“We found out around, like, 18 weeks that something was wrong,” Hannah said. “We didn’t know what, but based on lab work and stuff, something was off. We went to our 20-week appointment, which was our anatomy scan, and we did the ultrasound and everything. Afterward, the doctor said, ‘Well, she’s perfect from the neck down.’”

The diagnosis, Beare-Stevenson cutis gyrata syndrome, is a genetic issue that, among other symptoms, causes the bones of an unborn child’s skull to fuse prematurely, restricting the brain’s normal growth. Other attributes of the condition include abnormalities in the limbs, eyes and neck and problems with bodily systems, including cardiovascular, digestive, genitourinary, musculoskeletal, nervous and respiratory.

The odds of contracting the condition were nearly incomprehensible — little Ellie was just the 27th person in the world to be diagnosed with it, her mother said — but the prognosis was something easily understood.

“The syndrome is not compatible with life,” Hannah said. “I think the oldest living person that I found was, like, 5 to 7 years old, and they were wheelchair bound, couldn’t speak, couldn’t feed themselves, had been just in and out of the hospital their whole life. That’s just not the life that we wanted for Ellie.”

The awareness of something amiss proved to be the halfway point in the family’s journey. Ellie was born May 7, 2024, at 36 weeks, a little more than one week for every minute of life she would have on this earth. Her parents had already made the decision that her existence would be spent in comfort care — rather than being whisked away to the NICU, she would remain with the two people who had so long and lovingly awaited their moment to say hello and, as it turned out, goodbye.

“Both of us were crushed as soon as we heard the diagnosis. I think there was probably a week where we were mourning, trying to find answers and just mad,” Chris said. “Then I think both of us just collectively made the decision that we’ve got to attack this head-on in terms of finding answers. It was about what we needed to do for Ellie but, also, what do we need to do that’s best for Hannah, as well? Finding the answers to do the right thing kind of put our hearts in the right place.

“By the time Ellie came into this world, for the 30 minutes that she was alive, we were at peace with the fact that we were going to enjoy the time we had with her. She’s in a better place, and we’re so thankful for it.”

As the chapter of the Rose family’s life unfolded in the delivery room, Lizzy Yates stood nearby, snapping photographs. Yates, a Little Rock-based professional photographer, was there at the behest of the Roses as part of her volunteer work with Now I Lay Me Down to Sleep, an organization she had volunteered with for more than a decade. Through the nonprofit, she has served hundreds of families, each one providing a unique set of opportunities and challenges.

Lizzy Yates, photographer

“I try to enter these rooms and these situations, essentially offering a gift to these families of capturing the time that they have with their little ones and offering them a way to remember them that is beautiful and accessible and timeless,” Yates said. “Hopefully, this will be something that will allow them to, at least, aid in the healing.

“It’s the ultimate expression of what I do, capturing the most important moments that a family has. While we usually define that as capturing pictures of life, you know, in a very literal sense, the life is absent in some of these situations, but the love and the life of these families is so very, very present.”

Now in its 20th year, the Colorado-based nonprofit reports having gifted more than 75,000 complimentary portrait sessions in its history to families in the U.S., Canada, and 14 foreign countries and military bases. The group’s founder herself experienced the loss of a child, inspiring the mission, and while that is a common theme among many of the photographers that carry out the group’s work, such is not Yates’ story, which helps explain her initial reluctance to explore this type of photography in the first place.

“The way I came to the organization was truly through happenstance,” she said. “I was at a photography conference, and [Now I Lay Me Down to Sleep] had a booth in the back. They were recruiting volunteers. My best friend, who was also a photographer, said she wanted to go to the training, and I said there is no way in the world that I can do that work. There’s absolutely no way.

“I could not see in myself the ability to be in such an emotional situation and provide a service without becoming so emotionally involved as to become sort of not helpful. I told my friend, ‘I’ll go the training with you, but I’m never going to do that.’”

Yates, who specializes in infant’s and children’s portraits, among her other work, said she strives to tell a story within a single image. As she sat through the training in support of her friend, she was astonished by the realization that this type of photography represented the highest example of that ethos.

“This is capturing a child’s whole story for a family,” she said. “As I sat there in the training, it became more of a sensation of, ‘How can I not do this?’”

As the organization’s area coordinator, Yates maintains relationships with area hospitals and helps recruit and oversee vetting and training of like-minded photographers wishing to help, who currently number about eight in various stages of the onboarding process. Sometimes she is contacted directly by families, but, in the vast majority of cases, it is by hospitals. Most of the work in central Arkansas is currently done through UAMS, Baptist Health and Children’s Hospital in Little Rock with the occasional shoot in Conway, she said.

Melissa Odom, a registered nurse, is share coordinator at Baptist Health Medical Center. Her role helps coordinate bereavement resources for parents and families of high-risk patients, as well as those experiencing the loss of a child.

“With Now I Lay Me Down to Sleep, the real gem here is getting a professional photographer who not only is a professional photographer but is trained in this type of photography specifically,” she said. “It’s not the same as taking pictures of a live baby. It doesn’t have expression. It doesn’t have movement.

“Having somebody come in who really captures the moment, the feelings and the experience and not just, ‘Well, we’re just going to take pictures of this baby so that the family has pictures of this baby,’ is important. Their photographers provide so much more than that.”

Odom said the impact of a NILMDTS portrait goes well beyond the physical product parents receive, and she should know. Her daughter was stillborn in 1999, and she miscarried again before the birth of her son in 2001. More than 25 years after those losses, the emotions still simmer beneath the surface, erupting through her composure when she least expects it.

“I think one of the biggest things here is we are dealing with a type of grief that has historically been suppressed and hidden. It’s been very taboo,” she said. “When I teach a class about this, I tell the story of a best friend of mine who is eight years younger than me who has a sibling who was stillborn at full term, and nobody knows where that baby ended up or what that baby’s name was because it was not named. That was typical. Historically, it was typical for a physician to say, ‘Well, you know, it’s better not to see them. It’s better not to touch them. It’s better for you to just move on. It’s better for you to get pregnant again.’ Over the years, people started to see, well, maybe we need to approach this differently.

“One of the hardest things about losing a child during pregnancy or at the end of pregnancy is that nobody really knows that baby but the person who’s carrying it. It’s just this, kind of, this thought, but it’s not a tangible being to people. The photography that they provide really helps to fill that gap and make these babies tangible and memorable and a part of the family that can be shared with other people. They have these photographs that they can be very comfortable sharing. They can be comfortable putting them on social media. They can be comfortable sharing them with other people in their lives because they’re so tastefully done.”

For Chris and Hannah, the portraits taken of them with Ellie are an irreplaceable chronicle of a moment in time.

“I do think it was really special, especially from my perspective,” Hannah said. “I had a [cesarean section], so they give you all this medicine. I felt like I was present, but then, looking back at the photos, I was like, ‘Oh, well, I don’t remember this,’ or ‘I don’t remember that.’ It is nice for me to be able to look back and have those moments captured, even though I may not have been, like, mentally aware of everything going on.

“It was also nice that our families were included in the photos, all of our parents, our siblings. It was really nice to be able to include them so they also had those memories that they can look back on.”

It is hard to describe how powerful the achingly beautiful images are — the wonder in the parent’s faces and how the acceptance of what is shortly to happen shares space with the tenderness by which they cradle their daughter in those few fleeting minutes of life. Most of all, the black-and-white masterpieces place their daughter’s humanity over her condition, tinged around the edges by the love and commitment the couple feel toward each other through her.

“It’s something to look back on,” Chris said. “I mean, you can read an article. You can read text messages and kind of go back and get an image in your mind of how it went, but when you see pictures of that night, you can recount how special it was. Lizzy captured us through the pictures, just what we were feeling and what it meant to us. She really captured the emotion and the importance of the moment.

“You know, we can look back on the pictures and know that we did everything possible to put our child in the best place that she could be. Every time Hannah and I look at those pictures, that’s what we think about.”