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Touching other family’s hearts through Emma’s story

August 03, 2012

Emma is a giggly 7-year-old with an infectious smile that can light up an entire room. She’s just a normal kid who loves to dance, run around with friends, and have fun with her younger brother. What you wouldn’t know is that Emma’s journey has been nothing short of extraordinary. She was born with multiple heart defects, leaving her parents to wonder if she would even make it to her first birthday.

The day Emma was expected to arrive, everything seemed to be going as planned for Emma’s parents, Shannon and Chuck. The ultrasounds during Shannon’s pregnancy hadn’t detected anything abnormal, and they were anxiously awaiting the arrival of their first child. As new parents, Shannon and Chuck couldn’t help but dream about what it would be like to bring their baby girl home for the first time and experience their first night together at home as a family. However, within minutes of Emma’s birth, they knew something was wrong. She was blue and not breathing well and was quickly whisked away, out of her parent’s sight. The anticipation and excitement they felt moments earlier quickly faded to fear and uncertainty as Shannon and Chuck helplessly waited to find out if their little girl was going to be alright.

“I began to panic when I saw Emma’s pediatrician, who wasn’t scheduled to be with us at the hospital, racing down the hallway towards the critical care unit, not stopping to say a word to us,” Shannon recalls.

Emma was immediately transported to Arnold Palmer Hospital to ensure the best care for her condition. That night, Dr. desJardins, a cardiologist at The Heart Center at Arnold Palmer Hospital, explained that Emma was born with several heart defects. Dr. desJardins also explained that Emma would undergo a series of three surgeries, drawing an illustration on a piece of paper, in efforts to explain something that seemed so foreign to Emma’s parents.

Emma underwent her first heart surgery at just 6 days old, where Dr. William DeCampli, cardiac surgeon, and his team redirected blood through her heart and lungs. Her second surgery, performed when she was 5 ½ months old, provided “re-plumbing” of the blood flow through and around Emma’s heart.

By the time Emma was 3 ½ years old, doctors knew it was time for her third surgery. She wasn’t growing at a normal rate and people often commented on the blue tint of Emma’s lips and fingertips. Shannon noted that after having experienced two surgeries that were relatively easy, they were expecting the same experience with her third. However, Emma experienced several unexpected complications during her recovery, requiring a fourth open-heart surgery. Emma pulled through her final surgery with flying colors, and a few days later was finally able to go home.

As Shannon reflects on this time, she says, “Although we were uncertain of the outcome and anxious as new parents, we knew we would not be given anything we couldn’t handle. There were no ‘what-ifs’ with us, and we just took it one day at a time. The nurses and doctors were so comforting and supportive during this time and have become like family. The doctors were always willing to answer my questions, even if I had sent them 20 emails that day. To this day, we have a close relationship with all of the cardiac surgeons, and I joke they will be coming to Emma’s graduation and her wedding. I even call one of them ‘Emma’s boyfriend’. They have and still are a big part of Emma’s life, and we don’t know where we would be today without them.”

One of the biggest struggles for Shannon and Chuck during Emma’s diagnosis, multiple surgeries, and recovery was that they didn’t know any other families who were going through a similar situation. That led them to become heavily involved in the Family Advisory Council at Arnold Palmer Hospital, and over the past seven years have been able to connect with over 30 families who are going through a similar situation. Both Shannon and Chuck are able to say, “I understand” and mean it, because they too know what it’s like to see your child go through something no child should. Emma has a hand in giving back too, and is actively involved in the annual golf tournament the family hosts to raise money for the Children’s Miracle Network, an organization that helps support Arnold Palmer Hospital.

So, how does Emma explain the scar on her chest? Simple- “they had to cut me right here, fix my heart, and sew it back up!”. For Emma, the future is bright and full of opportunities to use her story to touch the hearts of others. But for right now, she’s just a typical 7-year-old girl who loves science and dreams of being a teacher. Her mom jokes that cardiologists love science and teaching others, too. Teacher? Cardiologist? Who knows… only time will tell.