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I am mum to Zeph, who is due to have a resection in the next 6 months (we're on a waiting list). He had a repair on a coarctation of the aorta at 3months old. As with your Joey, he wasnt diagnosed by our family doctor, and it was only discovered after failure to breastfeed well and when he started being sick alot!! Although he had a slight murmur at birth, our doctor didnt pick anything up at his 8week check. Only a few weeks later he had to go into hospital as he wasnt keeping anything down, so needed a drip for nutrition. When the doctors came round the next day, they heard a significant murmur and referred him straight away. It was only then that we realised the severity of his problem, so it was a bit shocking! Since then we have been having yearly and 6monthly checkups. So glad to hear that Joey is doing well, it gives us all hope. Emma Mason, mum to Zeph (6yrs old)

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Hello, first of all I have to thank you for the web-site and all the pictures and infomations you have put out for us to read. My 8 year old daughter is going to have a suboartic membrane removed on April 16th, 2008. It really was informative for me to read about your son's experiences on his surgeries. Please keep my daughter in your prayers and I hope that everything turns out great for her as well. How is your son doing now? I hope the membrane has not grown back again. I was told that once they pass a certain age, this thing does not usually come back again. Please contact me. I will be happy to hear from you. God bless.....

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Hello! My name is Penny Cummings and I am a mother to a 6 y/o daughter born with multiple CHDs. I am contacting you because a couple of years ago you offered your personal webpage address to me so that they could be included in a brochure that my friend Diane Gann was putting together. The brochures were included in gift baskets given to families beginning their CHD journeys. Diane is once again putting together these gift baskets and we need your help. If you know your personal webpage address has changed, please let me know so that I can save myself some time checking each one individually. Also, if you no longer wish to share your webpage with CHD newcomers, please let me know! Thank you so much for sharing your stories to others beginning this difficult journey! Penny Cummings,

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My little boy Tristan also has a subaortic stenosis. He is a beautiful 2 year old boy at a whopping 33 lbs. he is int the 100 percitile for weight and 110 for height, a brusier to say the least! Joey is giving us hope every day!