Shared 22q Stories

Sydney was just five days old when she had her first heart surgery — a surgery that would only be a temporary fix until she was strong enough to endure a partial transplant of a portion of her heart. Due to the oxygen levels in her blood being so low, a tiny shunt kept the [...]

My son Bennett, was born on 6/19/07. When he was born he had breathing issues and spent 8 days in the NICU. He was hospitalized 3 times for upper respiratory distress and pneumonia before he was diagnosed on 10/2007 at Texas Children’s Hospital… My Husband and I have traveled as far as New York to [...]

On March 24, 2011 I received a call saying, “a 7 week old baby girl just came available for adoption… She has DiGeorge Syndrome.” I was surprised when my husband said “Let’s get her, she needs a home.” The more we found out about her medical condition, the more scared I got. She also has [...]

I have been blessed to be Za’Niyah’s mommy. She is the most precious gift ever given to me. When I was 23 weeks pregnant I went for an ultrasound. They found that she had a hole in her heart. We were rushed to a fetal cardiologist where I was told that it seemed that the [...]

Our son Nicholas was born almost 4 weeks ago. We already had 3 children, and we were not planning on having any more. Then unexpectedly we found out we were having one more. Nicholas was born at 10:08 a.m. on the 11 year anniversary of my father’s passing. later that night the nurses found that [...]

Soon after Luke was born the hospital pediatrician noticed he had a slight heart murmur, but told us that most baby’s are born with murmurs and they usually go away as soon after the baby is born. At 2 weeks after his circumcision healed our pediatrician noticed he had a problem called hypospadias, told us [...]

We didn’t find out that Caleb had the 22q deletion until after he was born. My pregnancy was normal without any complications. All my tests came out normal. I went into labor right on my due date. The only complication of delivery was that Caleb didn’t drop, so the nurses had to push him down [...]

We found out about Olivia’s deletion through amniocentesis. She is one of the cases that is not hereditary, it was just a genetic anomaly. So far the main issues associated with her deletion are TOF with APVS. Olivia had her repair at 2 weeks old, on Valentines day of this year, but will still need [...]

My son Noah was born with a congenital heart defect called Tetrology of Fallot. For the longest time, this is the only defect that we knew about. He had his first heart surgery when he was three months old. By the time he needed his next heart surgery he was three and we had discovered [...]

Our beautiful Fernanda was diagnosed with DiGeorge Syndrome when I was 9 months pregnant. At 3 days old she had her first heart repair surgery, she stayed in the PICU & NICU for her first 3 months of life. She also was born with feeding difficulties, currently has a G-tube for feeding and cannot swallow [...]