Isabella “Bella” Winters was born April 30, 2010, with a heart defect called Double Outlet Right Ventricle Hypoplastic Left Heart Syndrome (HLHS). She was not diagnosed until one week after she was born. HLHS occurs when parts of the left side of the heart do not develop completely. Bella was immediately admitted to the ICU at Huntsville Women’s and Children’s Hospital for stabilization. Bella was then referred to Monroe Carell Jr Children’s Hospital at Vanderbilt in Nashville, TN. Bella has received all of her surgeries and treatments at Vanderbilt and is awaiting Heart Transplant there.

When Bella was 6 weeks old, she quit eating. We knew something was terribly wrong. We went to our regular cardiologist, who took one look at Bella and asked how long we needed to pack a bag and make arrangements for big sister. Bella was in need of immediate intervention. Bella was 6 weeks and 6 days old when she had a band placed on her Pulmonary Artery and an Atrial Septectomy. Bella’s second major open heart surgery, a Glenn Shunt, was in October of that same year. During that first year of her life we spent on average one week per month in the hospital. We saw Physical, Occupational and Speech Therapists twice each week. She also had to have a G-Tube placed and her esophagus wrapped so that she could be tube fed and keep food in her belly. Bella spent more time in a hospital as a baby than most people spend in a lifetime.

When Bella turned two we began to prepare for her final open-heart surgery, the Fontan Shunt. All of Bella’s open-heart surgeries were done to reroute her plumbing so that her dirty blood went directly into her lungs and the heart only had to pump the clean blood out into the body. The summer after her second birthday Bella had her Fontan Procedure. Shortly after her procedure, the doctors noticed that Bella’s heartbeat was abnormally slow. Bella was soon diagnosed with Bradycardia, an abnormally slow heart rate, which required Bella to have a pacemaker placed.

Bella has endured so much in her 10 years. At the age of 5 she had an episode of Tachycardia, an abnormally fast heart rate; during this particular episode she coded in the ER and had to be shocked back to life. Her daddy and I stood by completely helpless while our baby girl was dying on the table. Watching your child take what you think is their last breath is the most horrible experience. The doctors and team at our local hospital, Athens-Limestone Hospital, have always taken excellent care of Bella. They also know when to send her to Vanderbilt for more extensive care or heart-related issues. Bella struggles daily to keep up with her peers. She would love nothing more than to be a normal kid, but her current heart does not keep up with her desire to achieve. Bella is a fighter, she will come out on top.

Our family cannot thank everyone for the years of support and prayers while we have been on this journey. COTA funds will be able to help with lost income, travel expenses, anti-rejection medications she will have to take for the rest of her life, food, and any medical expenses not covered by insurance. COTA’s partnership with Bella and our family is for her lifetime, so COTA will also assist Bella with future medical costs as she transitions to adulthood. Thank you all from the bottom of our hearts for all the love and support.

The Children’s Organ Transplant Association (COTA) helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support. COTA is the nation’s only fundraising organization solely dedicated to raising life-saving dollars in honor of transplant-needy children and young adults. 100% of each contribution made to COTA in honor of our patients helps meet transplant-related expenses. COTA’s services are free to our families, and gifts to COTA are tax deductible to the fullest extent of the law.