Leading with Empathy

When portrait photographer Krystal Shuga’s son Noah was born with Down syndrome and a hole in his heart that required two surgeries, there was little time to think about photography. “We were in the hospital for three months,” she says. “Many of those moments felt overwhelming, and it was hard to see past what we were going through.”

As a photographer, it hurt that she couldn’t get her newborn son into a studio for professional infant portraits. So, she set up a makeshift studio at the hospital. “It was not ideal,” she admits. Although the photos were not perfect, she notes, “they embodied the journey we were on.” 

Once Noah was out of the woods and Shuga’s mind was clearer, she realized she could be of service to other families going through similar experiences. She launched Noah’s Lens, a niche of her business that focuses on portrait sessions for children with chromosomal disorders like her son’s. Many of her clients find her through GiGi’s Playhouse, an organization she’s involved with that supports children with Down syndrome, as well as through referrals.

Shuga offers tips for photographers making portraits of children with chromosomal disorders:

• Many chromosomal disorders have wide spectrums, so never make an assumption about a child’s abilities.
• Communicate with the family before the session so you understand the child’s abilities. Rather than focusing on milestone sessions, she asks what a child’s abilities are, she says. “Not only does it give a good guide to help with the session, but it helps not make any parents feel discouraged their child is not where the typical standard is.”
• Have the family complete a questionnaire that details accommodations necessary for the child as well as any important celebrations, such as a heart surgery anniversary or the removal of medical equipment.

“The truth that I have noticed personally and with other families is that there is a guard in place,” says Shuga. “When you need certain accommodations or additional time and planning, it can be a stressful thought to find someone who will be understanding. So, when you find photographers who put your needs and accommodations first, it can help let that guard down.” 

Amanda Arnold is a senior editor.