Julie’s story

Hello, this is my story with 22q11 syndrome. I was born on 18/08/1991. Around the age of 6, I had learning difficulties in math and comprehension problems, but I didn't know more about it... When I got pregnant, my baby was diagnosed with heart problems, including Tetralogy of Fallot.

She had to undergo open-heart surgery between 3 and 6 months of age. I also have DiGeorge syndrome (22q11), the same as my little girl. From that moment on, I began to learn more about myself: I was in an incubator for 10 days, I didn’t walk until I was 3, etc. My parents had kept this from me for 33 years.

One day, when I was alone with my father, waiting for the genetic results to find out if the condition was mine or my boyfriend's, my father told me it was mine. It was a truth that broke my heart, and since then I’ve cut all ties, which has made things much better.
It’s been a month since my baby was born, and I’m starting to recognize some of the symptoms I may have had as a child.
I deal with a lot of anxiety, fatigue, and difficulty integrating into groups of people.

My baby struggles with drinking her bottles without regurgitation, because she has trouble drinking and breathing at the same time. I’m angry with my parents because I feel like they took a part of me away and lied to me for 33 years. I no longer want to talk to my mother, but I still keep my father updated. I don’t want to speak to my mother because when I told her she could inform the family, she said, “no one should know.” This made me feel very isolated.

However, I don’t want my daughter to grow up in ignorance of our syndrome, which I’m sure will create a strong bond between us. I’m well-supported by doctors, psychologists, and psychiatrists, and I’m slowly progressing to come back much stronger.

 

Julie