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Network of Support for Deaf and Hard of Hearing

Here is the fourth entry in my Storytelling Portrait Series this summer/fall! I will be highlighting children and teenagers who live with significant medical conditions, and telling their stories.

The Story

Baby Alexandra was born with profound hearing loss, due to a genetic condition called Waardenburg Syndrome. This syndrome manifests in a variety of ways, but for Alexandra, it affects her hearing.

In this photo, she is wearing her hearing aids on a headband. Because 90% of her hearing is gone, they don’t help much, but wearing them helps her brain get used to receiving audio signals. This is an important step on the way to getting her cochlear implant.

When I was first speaking to Alex’s mother about life with hearing loss, I was struck by the way she described her network of support. Alexandra has an entire team of specialists behind her, working to help her communicate in so many ways. That support is what I wanted to represent in her portrait.

Behind the Scenes

Alexandra’s mother and I worked together to brainstorm symbols for each of the specialists. We landed on a stethoscope for the Ear, Nose & Throat doctor, an ear with a cochlear implant for the ENT surgeon, and an audiogram for the audiologists. Then we had lips for the speech-language specialist, ABC’s for the deaf educator, and an ASL sign for “I Love You” for the deaf mentor. Finally, there is a heart for the deaf parent mentor, and all the people who love and support this family.

I engaged LeRusticChic, an artist on Etsy, to design a set of wire sculptures featuring these symbols.

I chose blue to highlight Alexandra’s beautiful eyes (vividly blue eyes are another feature of Waardenburg Syndrome). I chose a romper from Oliver & Rain. Then I found blue ethernet computer cables and simple networking modems to literally represent the network of support.

When we first began shooting, I had the sculptures standing vertically around Alex while she sat in the middle. Eventually, I shifted to a birds-eye view, flattening all the sculptures and placing the baby on her back while I shot from above. This allowed me to create nested heart shapes to really emphasize the care that surrounds her at all times.

 

I learned so much during this process! Due to the pandemic, I could not invite Alex to come play with me, my usual method of connecting with babies. I couldn’t touch her at all! Gaining her attention was also a new challenge, since I could not sing or make my usual funny noises. I am so pleased we were able to overcome these challenges and capture Alexandra’s happy self!

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