Retrun to 22q Stories

You are here

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 blood flowing to her lungs which were much too delicate to handle a crying spell. Imagine trying to keep a newborn baby from crying! What a challenge! Within a few weeks of her first major heart surgery, doctors discovered that she was also born with malrotated intestines. Sydney had barely recovered from heart surgery, and she was back in the operating room to have abdominal surgery. This would be difficult for an adult to endure, let alone an infant. At a few weeks old, she was as tiny as ever, beautiful and gaining some strength. Finally, it was time to take her home! This relief was short lived, because after only a month at home, Sydney suddenly became very ill and was rushed to the local hospital. After another night in the hospital, the doctors sent her home blaming her illness on reflux or virus. Call it past experience or a mother’s intuition, Sydney’s mother couldn’t shake the fear that the illness was more serious than the doctor’s diagnosis. Sydney’s parents decided to get a second opinion and took her to a specialist at Hope Children’s Hospital. Sydney was immediately rushed into emergency surgery — scar tissue had formed in the weeks after her abdominal surgery which lead to a perforated bowel — in short, she had sepsis and was dying. The doctors did not expect her to make it through the night. The next morning she awoke from surgery and was back at home 10 days later. This miracle officially earned her nickname at the hospital, “Tough Chick.” Sydney is now 13 years-old and has endured 11 surgeries since she came into this world. She was diagnosed with DiGeorge Syndrome (22q11). DiGeorge Syndrome is a deletion of a portion of chromosome 22. Sydney is set to have another surgery this year to repair a valve that is beginning to fail. A portion of Sydney’s heart is transplanted, so the tissue will not grow as she grows, and she will need surgeries for the rest of her life. Sydney has no health insurance, and these surgeries will not be possible without your help.

Latest News

Upcoming Event

Spread the Word