Greenville Documentary Family Photographer

Kennedy’s HLHS Story –

as told by a Greenville Documentary Family Photographer

When I first heard about Kennedy I knew I had to capture her story.  As a documentary driven photographer I knew her everyday moments were important to preserve.

I first learned about Kennedy from my friend April.  Her best friend Cecilia was pregnant with her second child who had been diagnosed with HLHS, Hypoplastic Left Heart Syndrome prior to birth. More about HLHS later.

Kennedy was born in November 2016.  In spite of all the doctors’ appointments, various therapies, medications, and tube feedings for Kennedy, she was born into a typical American family. Her dad Jeff works hard every day. Her mom Cecilia is going school majoring in exercise science with a minor in Psychology.  Big sister Ryann was in the middle of 4k when Kennedy came into the world and is full of love, life, and energy.

It was very meaningful to me to be able to document for Cecilia and her family the normal moments of every day.  We ended up shooting a girls’ day with Mom and her two precious little ladies.  I would not trade this day for anything.  I hope these pictures show these girls a taste of how much their mother adores them when they have children of their own.

What is Hypoplastic Left Heart Syndrome?

Babies born with HLHS have an underdeveloped left side of their heart which blocks the flow of oxygenated blood from their lungs. Parents of children with HLHS must work with their doctors to decide the best course of action for their children. They have limited options and must decide whether a heart transplant or number of surgical procedures called staged palliation is the right choice for them. Staged palliation involves 3 separate open heart procedures in the first 5 years of the child’s life.

Kennedy’s doctors and family have opted to pursue the staged palliation route.  Because of this, at 10 days old Kennedy went underwent her first surgery.  She later had to have an additional surgery to drain some fluid from around her heart and to make the hole in her heart bigger.  Now at almost 10 months old Kennedy is getting ready to have her 3rd surgery, (the second in the staged palliation series) the Glenn.  To learn more about HLHS you can visit https://pediatricct.surgery.ucsf.edu/conditions–procedures/hypoplastic-left-heart-syndrome.aspx .

 

Kennedy’s story isn’t just about a baby who was born with a heart defect.  Kennedy’s story is one of determination and endless love.  I am truly honored to have been able capture these images for Kennedy’s family.

I truly enjoy documentary photography.  A day in the life, a day in your life should be worth remembering.  Email rachel@degenphotography.com to schedule your documentary family session today.

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Greenville Documentary Family Photographer

Degen Photography

Greenville, South Carolina

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