By: Jennifer and Brad Dillard, Ben's parents
Williamson County, Tennessee
When Benjamin was born on September 6th, 2002, he looked like any other beautiful rosy-cheeked newborn baby. However, the operating room was full of cardiologists, neonatologists, pediatricians, and nurses waiting to take emergency care of our very sick little boy. Benjamin had been diagnosed at 19 weeks in utero with Hypoplastic Left Heart Syndrome, basically meaning that he had only half a functioning heart.
Benjamin spent his first ten days in the Neonatal Intensive Care Unit, trying to gain enough strength to undergo the first of a planned three-stage surgical procedure to rebuild the undeveloped half of his heart. Benjamin’s recovery from the first surgery was slow and perilous because he was so weak; there were several episodes when we almost lost him. The second surgery had to be postponed. But against all odds, Benjamin grew strong enough for us to bring him home for the first time when he was two-and-half months old. We hoped for a brief rest for him before he faced his next surgery and another long pediatric intensive care ordeal.
But a month later, he contracted RSV, a serious respiratory virus that is often deadly for infants with heart disease. Benjamin was rushed back to the PICU and we almost lost him again, as his heart could not support his damaged respiratory system. The doctors and nurses tried desperately to keep him alive as they realized that Benjamin’s only chance at life would be a new heart. Two weeks after he was placed on the heart transplant waiting list, he developed yet another infection. It scared us because we knew he couldn’t get a transplant until the infection went away. We were told he was the sickest child they had ever seen awaiting a heart. On February 25th, 2003, his blood culture finally tested normal…and that night we were told that a “perfect” heart had become available. The morning of February 26th -- Benjamin’s new birthday – his new heart began beating on its own. The timing of that blessed heart being donated on the first day his infection healed was truly a miracle of God.
Little Benjamin spent his first fragile eight months in the hospital. It was a long, emotional journey, and now Benjamin is an amazing child, full of life and laughter. We make the most of every minute with him and his older brother, Sam, one day at a time, because we have learned that life is precious and should never be taken for granted.
We are so grateful and humbled that the family of Benjamin’s donor chose to give life to Benjamin and other children by donating their child’s organs. What a heroic decision in the midst of their grief. It’s a gift we can never repay, but hopefully by sharing Benjamin’s story, we can bring about awareness, and give hope to families who wait and to families who must make the most difficult choice of their lives.
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