Alicia, born 1992

Geez - what to tell you about Alicia? She is a petite, healthy 13 year old who loves Avril Levigne CDs, riding her bike, giving her sisters pedicures, swimming and going to heart camp! She's such a sweet girl - generous, kind, a peace maker. She loves her bunnies and animals in general. Although she has plenty of friends her age, she takes time to play with the little ones in our neighborhood who just adore her. She is so smart and does her homework without a complaint. She learned to knit at the age of 9 and sat for six hours knitting that first day! We camp and hike and she participates fully in gym at school.

 

She's so normal and our pediatric cardiologists visits are so routine. At the age of 10, she had her fenestration closed through a catherization which was so scary since she doesn't remember any of her surgeries from her childhood. Her PC said she will need a pacemaker in a few years. She takes medicine every day, but otherwise, goes about her daily life.

 

Life wasn't so always so easy. Her first year was hell - she had reflux as an infant, g-tube and Bi-directional Glenn at 10 months of age with the correction of her malrotated intestines at the age of one. A few catherizations and then her fenestrated Fontan at the age of four.

 

Such a hard start to life. We were shell shocked by her diagnosis. I was 21 and straight out of college and my husband was only 23 - we were newlyweds. "How did you do it?" everyone asks. You do what you must and stick it through and try to see only the best outcome. A fantastic pediatric cardiologist and hospital helps as well as supportive friends and family. I said a prayer after she was born. "God, either let her go now or make her life worth living." I left it in his hands and he's definitely made her life worth living.

 

Not sure what the future holds as the extended outlook for Fontan patients is unknown. Her cardiologist said, "we hope this will last a long time." I know she's not "done" but with technology moving so quickly these days, I'm hoping they will have a permanent solution soon. We are so grateful for getting so much time and a normal childhood for her.

 

Story by Alicia's mom, Jean - Massachusetts