Thank you guys sooo much for sharing your little one's story! My son is 3 months old also and is getting ready to go through his first open heart surgery in 4 days 6 hours away from home. He was born with Aortic Stenosis and he had 2 balloon (cathedar) procedures that didn't work, so now is the big one. He will be having the Ross procedure though where his valves will be replaced. Daniel (my son) will have to have these surgeries all through out his life as he grows to have the homographic valve replaced periodically as he grows because the new valve will not grow with him. Reading Joey's story helped me feel a little bit more at peace with the surgery but I still have many questions. Could you contact me? It would be so helpful to get some information and advice from someone who has recently went through something that I am also. Good luck Joey and you're such a strong little man. :))
My email is email@example.com
Erin Jones said:March 25, 2013 9:27 am PST
It has been wonderful watching you grow into the happy little boy you are. Lots of love.Erin and Family
Diego Romero said:November 23, 2012 8:39 am PST
with the world at your feet, your smile gives strength, small you have nothing, you're great, God bless you
Nancy said:November 17, 2012 7:46 pm PST
Thank you for sharing your story. A friend is pregnant with a beautiful little girl who will be born with TOF. Reading your story gives hope and we thank you! You are an amazing little guy and I pray that God will bless you with a long and healthy life! Keeping you lifted in prayer.
Nancy C. Neumann said:November 17, 2012 6:15 am PST
I have a 22 year old daughter with tetralogy of Fallot. Her name is Ericka. She is a nursing student and married for 2 years. I always loved to hear from parents of tet babies. Her surgeon Ann Arbor. God Bless you. Please free to email me at firstname.lastname@example.org if you ever need someone to talk to. She has had 1 closed heart surgery and 3 open heart. She is a wonderful girl with a heart for babies due to her condition. Her cardiologist also says that she will be able to have children of her own some day. Enjoy your time with him. I was always stressed out and feared losing Ericka and here we are 22 years later. He will have a wonderful life.. Nancy Neumann
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