Kaylen's Story
On February 5, 2002, our daughter Kaylen Marie finally arrived; she weighed 7 lbs. 7 oz. and was 19 inches long. She was born on her great-grandmother GranKay's 80th birthday; therefore, Kaylen was her namesake. GranKay was in the room with us to experience the birth of her first great-granddaughter and the first girl born in the family in over 20 years. Everything was perfect those first few hours until the Pediatrician informed us that Kaylen had a heart murmur. Since heart murmurs are common occurrences in most newborns, he told us not to worry but they would need to monitor her for the first 24 hours to see if the murmur went away. Her murmur didn't go away and the day she was discharged from the hospital, we went straight to Vanderbilt Children's Hospital for more testing. Kaylen's tests showed mild increased pressures around her heart and we were told to come back in four weeks for a follow-up appointment. We went back for monthly check-ups and the results of each test worsened. When Kaylen was three and half months old, the tests showed her Aorta and Pulmonary arteries were extremely narrow and her heart was struggling with the added pressures. Kaylen was diagnosed with Aortic and Pulmonary Stenosis, they same heart condition that Craig was diagnosed with as an infant. We were completely devastated; yet hopeful, because of Craig's triumphs through his three heart surgeries.
Kaylen underwent open-heart surgery on June 20, 2002. We were nervous and scared, but still very confident that she was going to be fine. The surgery was scheduled to take about 5-6 hours but at about the 3 hour mark, they told us there had been a few setbacks. After the surgery the surgeon requested to speak with us concerning Kaylen’s operation. The doctor told us Kaylen was strong but her heart was very overworked. She wasn’t strong enough to come off of the by-pass machine because her heart could not function on its own. She was immediately put on a machine called ECMO (Extra Corporeal Membrane Oxygenation) which is a bed-side by-pass machine and she was given only a 33% of living. We felt so heartbroken and helpless. Our only child was a beautiful, happy little girl and she was given a 33% to live. We prayed every hour and we had every pastor, priest, and elder come to visit and pray for Kaylen. We just knew our faith and prayers would carry her through this time in her life.
On June 26, 2002, our lives were completely shattered. The doctors tried everything they could to help Kaylen’s heart beat on its own, but it was too late. Heaven was ready for our little Angel and we let God take her back home. We held her for a while to let her know we loved her and that we knew she was going to be alright. All of our friends and family came in to kiss Kaylen goodbye and to let her know we would see her in our dreams and in heaven again one day.
Our dream is that Kaylen will continue to live within each child the Kaylen Foundation can help. We love Kaylen and we miss her so much everyday but we know she will always have a special place in the hearts of each person who held her.
Craig & Carisa Burr
