Zoe's Story

From Zoe's Mom

My life changed and it felt like I was awake living a nightmare when my healthy six month baby was diagnosed with a rare congenital heart defect, ALCAPA. My child went into heart failure with only 8% heart function. My daughter was stabilized and given open heart surgery. At a year and a half, she had additional surgery because the left coronary artery was scarred down. At that point, my family was told that the artery was no longer functioning and my daughter would have to live with what she had. My toddler had a very uncertain long term recovery after the heart attack that she suffered at birth. I had no clue what pediatric heart disease was and how it would affect my child's life. The simple things that other parents took for granted were a challenge for my little girl. The endless tests, office visits, and not to mention the financial burden. The best thing I did was ask questions, take notes, and if I didn't understand, I asked until it was clear. The two things that I told myself I was going to do if my child beat this was to give my child a normal life and educate myself since I had to educate my child with this condition.

It is now four years later and Zoe is going to celebrate her fifth birthday. She is a recovered child, not cured. She lives every day with heart disease and functions with one artery. The medical appointments are now twice a year and she has been off of medication for one year now. Zoe is in preschool, plays on a soccer team and is in gymnastics. I could write a book on this four year experience and parents would not believe me. When I tell parents what my family has been through they probably think I am exaggerating because Zoe is now the poster child of a normal healthy little girl.

Zoe laughs when I tell her everyday how lucky I am to have her.