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Charlotte’s Story

In January, 2005, our unborn child was diagnosed with Truncus Arteriosus, an uncommon, complex heart defect. On May 9, 2005, our daughter Charlotte was born (4 weeks early). Within twelve hours the Children’s Service Board Transport Team of Children’s Memorial Hospital had transferred her to Children’s and she was in the warm and competent care of the CV and PICU teams.

She had her first open heart surgery at 7 days. After a long recovery—49 days total in the PICU—Charlotte came home to us and began her long road toward a regular, normal life. Her heart caused no apparent problems and she continued to heal beautifully. She did, however, struggle with a long term feeding disorder that eventually sent her back to the operating theater for a g-tube insertion. In March, 2007, Charlotte had her second Truncus repair (really a replacement of parts she had outgrown). The immediate difference was astounding—Charlotte was home from the hospital in 4 days, she began to eat volumes and grow like a weed. Today, Charlotte is in the 95th percentile for height and 75th percentile for weight(from “not on the growth charts” at 6 months old). She is a typically developing, chatty, happy near-three year old.

To learn more about Charlotte’s Journey Home and her ongoing travels through a thoroughly miraculous life, visit her at Charlottesjourneyhome.blogspot.com

Written by her mother

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