CullenOur son, Cullen, was born by c-section the morning of December 6, 2006. He was perfect! He had beautiful blue eyes and blondish hair. Our excitement turned to fear when Cullen developed a heart murmur and stopped feeding later that day. To us he seemed ill but the doctors and nurses assured us that he was fine. The next day they put in a feeding tube and though we were certain that something was very wrong, we were told not to worry.
Cullen began to crash quickly only a few hours later. Cullen had stopped breathing and an emergency transport team was called to rush him to UVA Hospital. Cullen had a heart attack before they arrived and due to the lack of blood flow and oxygen he suffered damage to all his organs. Once arriving at UVA, we learned Cullen had HLHS. They immediately started giving him blood tranfusions and told us that a lot of time had passed when he needed immediate care. They told us that he was as sick as they come and to pray.
We were too hopeful and angry and confused. How could something be wrong with our son? Why did the first hospital not listen to us?
On Saturday morning, December the 9th, we were having Cullen baptized when the alarms by his bedside went off. The Pediatric Cardiologist kindly told us that there was nothing more they could do. Cullen opened his eyes and took his last breath. We were led into a private room to say our goodbyes. It was so hard to say goodbye to someone we barely got to know. We hadn't got to touch him since he was transported because he couldn't tolerate any stimulation. I remember unwrapping his blanket to see his feet and his fingers. I smelled his hair and apologized to him so many times immediately after the nurses took him. My husband and I sat down and made the hardest decisions of our lives.
We wanted Cullen's life to have some type of purpose we decided to donate his heart to the Department of Science at UVA to help researchers learn more about HLHS. We donated the few viable heart valves he had to Lifenet and we
gave his eyes to the eye bank for Parkinson's research.
Cullen changes our lives forever and we miss him everyday!
Story by Cullen's mom, Tina - Virginia