Kari Ohlenkamp can’t help but tear up when she talks about the portrait of her 2-year-old son, Giovanni Turner, which hangs as part of a photo exhibit at University of Iowa Hospitals and Clinics.

The picture, in black and white, is a close-up of the bright-eyed toddler with a tousled mop of thick black hair. He’s wearing just a diaper and sitting on a bed, with a dressing that covers the insertion site of his central line.

The portrait, taken through the Cherished Portraits program at UI Children’s Hospital, looks like it could be a regular professional photo. These pictures, however, are anything but ordinary.

The Cherished Portraits program provides private, professional portrait sessions for families experiencing stillbirth or newborn death, infants and children with life-threatening illnesses, children who are facing the end of their lives, or at the time of an unexpected death. The photos are offered on-site by professional photographers, and are given to families at no cost on a disc to serve as a testament to the life that may be brief.

The program was honored by the American Hospital Association with a Hospital Awards for Volunteers Excellence (HAVE) for In-Service Hospital Volunteer Programs. Some of the photos are on display, with the expressed written consent of each family, as part of an exhibit outside the Volunteer Services offices on the eighth floor of UI Hospitals and Clinics through Oct. 12.

Giovanni Turner’s portrait is one of those in the exhibit.

Giovanni’s story

Giovanni has faced health issues since birth—first an unstable airway led to a tracheostomy and several procedures to rebuild the airway. He had difficulty eating and drinking so he had to have a GI tube inserted to help with nutrition.

But it was when he was scheduled to have his tracheostomy removed that Giovanni’s situation turned grave: doctors diagnosed him with stage IV rhabdomyosarcoma, a soft tissue cancer that left an inoperable tumor near his pelvis. His only options are chemotherapy and radiation and his prognosis, Ohlenkamp says, isn’t good.

She’s grateful for the photos she has of her son, she says. She uses them in fliers for benefits in Hudson, Iowa, where they live, and has made prints of some of them. They’ve captured his young, positive spirit, she says.

“I try not to cry about this because when I look at him he’s not letting it affect him,” she says. “Because of his tumor and where it is he has trouble walking, but he doesn’t want people to carry him. He wants to do things on his own. He always pushes himself, even at this age.

“I was grateful they came and took the photos, because the future is so uncertain,” she says.

Volunteer photographers

Five photographers volunteer their services and are “on call” for the Cherished Portraits program. They’re all professional photographers from the Iowa City area: Laura Eckert, Shueyville; Emily Crall, North Liberty; Jaimy Ellis, Iowa City; Sarah Nebel, Riverside; and Mindy Decker, Amana.

Eckert was first approached a little more than two years ago. She had been in the hospital with her youngest child a year earlier and had developed a relationship with some of the hospital staff.

“I was a patient at UI Hospitals and Clinics with my last child, who is now 4,” she says. “Jane Wilkins (RN, BSN, NCS, a nurse in the fetal diagnosis and treatment clinic) knew I was a professional photographer, and when she saw some of my images she asked if I’d be interested in working with this program.”

“I had a baby at the time and my initial reaction was that there was no way I could do it, that it would be too hard,” Eckert says. “She suggested I try it and if I wasn’t comfortable I could walk away and everyone would understand.”

Now, two years and more than 30 Cherished Portraits sessions later, Eckert considers it just as much a part of her photography business as anything else.

“How can you not walk in and do another one when you see how much it means to the family?” she says.

Although it’s gotten easier than in the beginning, it’s still not an easy task, Eckert says. She’s learned to create a distance between herself and the situation.

“If you allow yourself to feel what the mother and the family are feeling, the emotions really take over,” she says. “Sometimes I use my camera to provide that separation. You go in and you have the camera in front of you and you’re more aware that you’re doing your job, so you can focus on the technical aspects.”

Eckert says much has been said about what the photographers provide the families—there is no cost involved in the photo sessions, and each family gets a disc of photos—but the photographers gain a lot, as well.

“As professional photographers we are often meeting clients on the best day of their lives. We shoot their engagement sessions, their weddings, and their newborn babies,” she says. “But when I walk into a Cherished Portraits session, I’m meeting someone on the worst day of their life. It is almost indescribable to have the opportunity to be a blessing to others in the midst of their deepest pain, and as they heal and grieve down the road.

“I make a more conscious effort to not take my loved ones for granted,” she says.

How it works

Cherished Portraits had its first portrait session in 2007 after hospital staff started looking at different grief support programs for families and options for providing families with a memento the hospital hadn’t offered before, says Jean Reed, director of Volunteer Services for UI Hospitals and Clinics.

“For those who have been through a loss, they can really connect with the gift of that photograph, that memory,” Reed says. “A lot of times people can’t remember not only the details of the child but also the emotions they go through on that day. These photographs help them recapture some of that and hold onto it.”

Sheila Frascht, Grief Services coordinator for UI Children’s Hospital, says the portraits are a keepsake that serves to mark that child’s life.

“A big piece of it is the validation that it’s OK to capture who a family is at any given time,” she says.

When a family comes into the hospital and is facing a stillbirth or with a child with a life-threatening illness, a nurse approaches the family about the Cherished Portraits program and talks to family members about the portraits. If a photo session is requested, a group of volunteers, called “Pager Angels,” start calling the five photographers to see who is available for a session.

The photographers donate their time during the session as well as edit the photos and compile a disc of portraits. The disc is then given to the family. The decision to print photos is left to the family, Reed says.

“Sometimes they’re not ready to see the photos right away. Sometimes they may not be ready for a long time, but it’s nice for them to have that disc so they can see photos when they are ready,” she says.