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How Kellen helped start the big heart fund

My son, Kellen, was born with what doctors could only describe as a “complex heart” and immediately following birth, he was placed on a Pedi-Flight to Le Bonheur Children’s Hospital in Memphis, Tennessee.

by Katrina Dorse

We spent one month in the NICU before coming home. During this time, we hoped that Kellen would continue to get better on medication and would not need surgical intervention until later. Unfortunately, one of his heart defects worsened and he underwent his first heart procedure in June 2016, which was unsuccessful. What was supposed to be a short, one-week hospital stay began Kellen’s three-month journey in the Cardiovascular Intensive Care Unit (CVICU).

It seemed that no matter how hard we tried, Kellen had difficulty recovering but along the way, the staff at Le Bonheur walked with us hand in hand. Their philosophy of patient and family-centered care was evident in everything they did for Kellen and our family. I remember after being in the CVICU for nearly two months, Kellen needed a same-day emergency surgical procedure. Most days, I was ready for the ups and downs of having a critically-ill child, but this day was different. It was superhero day at Le Bonheur and I was struggling greatly with worry. On her lunch break, one of the nurses caring for Kellen spent time making him a personalized superhero cape. She brought this bright green cape to his room and we hung it up, knowing it symbolized the great fighter he was and eventually becoming the inspiration for our Kellen’s Capes for Kids program.

Towards the end of his journey, I remember growing frustrated with his lack of progress and I expressed this to the team. Instead of dismissing me as a worried mom, they listened and helped me weigh all options together, reminding me that they cared for Kellen as much as I did. That day, we listed Kellen for a heart transplant. Throughout this time, Kellen had gained a following on Facebook of supporters in the community and his Facebook page, Keeping Up with Kellen, reached over 80,000 people in its first six weeks and started the #fightlikekellen movement. Kellen would go on to fight many great battles during his time in the CVICU. In total, he endured two open heart surgeries, three cardiac catheters, one joint catheter/surgical operation, and three days on life support (ECMO).

Through it all, I never had to leave Kellen’s bedside, overwhelmed with the many prayers, gifts, and selfless acts performed by the Le Bonheur staff and Memphis community everyday just so that I could focus on what mattered most—being there for my son. Despite the best efforts of the Le Bonheur staff, Kellen’s brave fight ended at just five months old on September 16, 2016. In remembrance of Kellen and all of the CHD superheroes, the Big Heart Fund was created to provide support to the patients and families of the Heart Institute at Le Bonheur Children’s Hospital. To date, we have raised nearly $25,000 to serve the hundreds of families impacted by congenital heart disease in the Mid-South. By meeting the needs of the patients and families of the Heart Institute through physical, social, and financial support, we can ensure that every parent receives the support necessary to focus on what matters most—being there for their child.

About

Kellen Dorse was born with multiple congenital heart defects and passed away at 5 months old while waiting for a heart transplant. In honor of the many CHD superheroes just like Kellen, we are providing support so that every family can feel empowered.

The mission of the Big Heart Fund is to support families of the Heart Institute at Le Bonheur Children’s Hospital.

The vision of the Big Heart Fund is to develop a spirit of community among families battling congenital heart defects through social, physical, and financial support.

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