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“Isabel has helped me to find my place in life”
Isabel Hernandez, Mosaic Trisomy 13, Brentwood, NY, 12/14/2010
Isabel is the youngest of six children. She was a normal pregnancy and a repeat c-section. Everything seemed fine until Isabel was about 5 five days old. She had a severe apnea episode and had to be resuscitated and transported to the local children’s hospital. Isabel was released two days later and I was told it would not happen again. Well, it did happen again and continued to happen for weeks. We finally were able to get her on an apnea monitor. Two weeks later Isabel started to have uncontrollable seizures and was admitted to the PICU for two weeks. During that time genetic testing was done but the geneticist did not think Isabel had any chromosome issues. Three days after being discharged from the seizure incident Isabel was re-admitted for respiratory distress and that day we got the genetic testing results. Our worlds were forever changed. Isabel has 20% trisomy cells. The other 80% are Iso uniparental Disomy 13 meaning they are two chromosomes from the same parent. Apparently in utero Isabel’s body did what is called a TRISOMY CELL RESCUE and corrected 80% of her Trisomy cells. Isabel had a G-tube inserted on February 18, 2011 and was trached on March 24, 2011. After a few bouts of pneumonia we started to put her on a ventilator at night in June of 2011. Isabel is 17 months old today , she says “mama” and “dada”, she rolls over, and she is 23 lbs and 31 inches long. She loves her brothers and sisters and they are amazing with her. I thought it would be so hard for them to understand that she is disabled, but they do understand and they accept her and love her dearly.
As of August 2012 Isabel is no longer using the ventilator at night. We are capping her trach during the day and working toward removing the trach this summer. I have created a facebook page so that everyone can join us in watching Isabel thrive…NOTHING THAT LIVES AND BREATHES IS INCOMPATIBLE WITH LIFE!!
My journey brought me to Living With Trisomy 13 a non profit organization sharing stories and inspiration of children with trisomy. The joy that I receive putting together these albums and having parents say “thank you” and tell me how much they love the albums is pure joy. Isabel has helped me to find my place in life and given me new found joy. For all the moms out there that have just received this diagnosis, I want to tell you it ‘s hard, but it gets better. They love and joy that you will receive from these children is irreplaceable. They are pure and innocent and angels here on earth. GOD has picked us to be mother’s to these amazing children for a reason. You can do this and you will do this because, YOU WERE MEANT TO DO THIS. We are here for you. Isabel has shown our family how to live for each day. She has made our family special and we love her very much.
Vanessa, mom to Isabel