Cody was born on 05.02.2003. He is now 3 years. old. He was diagnosed at 3 weeks old with Williams syndrome. It is a rare genetic condition which causes medical and developmental problems in 1/20,000 births.
Cody's journey started when he was 3 months old when he needed a hernia operation which was meant to be very quick. He had a cardiac arrest within 5 minutes of being under. We were told the worst, that he wouldn't make it. Within 48 hours on Mothers day he started to get better. He was in ICU for a week. When he was born we were told he had aortic and pulmonary stenosis but it was mild at the time. After Cody's arrest they did more tests to see if his heart had changed from being mild but thank God everything looked good at the time. We were told that Williams kids can be more at risk with anesthesia. That was a huge worry after the hernia operation.
After we got Cody home we struggled with feeding and bad reflux which kept us up most nights. When he was 6 months old he got a bad cold and was sweating a lot while feeding so we took him to cardiology for a check up. They were shocked as Cody's heart went from mild to severe. We had to go to Melbourne ASAP for heart surgery. My worst nightmare was happening. He had was under anesthesia 5 times while we were there. Heart surgery was 12 hours. It was the longest day of our lives . The little fighter that he is, he pulled through with a few hiccups and we got to bring him home after a month.
Since then he has thrived, it's like I had a brand new boy that finally liked feeding. He has been a complete joy, he loves everyone around him. We still have cardiology every 4 months plus speech therapy but all going real well. He does suffer with ear infections and colds but deals with antibiotics well. We are hoping as he gets older he will grow out of that. I hope I can help family's out there as the first year is very hard but it just gets better and better. He is our special little boy, we all love him so much.
Love, Audrey, Jason and Cody
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-The support, information and encouragement provided by the PPFL parents is not meant to take the place of medical advice by a medical professional. Any specific questions about care should be directed to a health care professional familiar with the situation.