My Story

Ashley - posted on 11/14/2010 ( 2 moms have responded )




I have been reading your posts about your babies being born with Tetralogy of Fallot. I am so sorry to hear that, however I know everything will be okay. I was born with Tetralogy of Fallot. I had open heart surgery at the age of 8 months old and recovered so well. My surgery was done at Doernbecher Children's Hospital in Portland, OR. I was sent home without any medication. I haven't had to take medication my whole life :)
Up until now, I have had yearly check ups with the doctors. I am now 25 and just found out this past week, after visiting with OHSU, that I will be having another surgery in a few months. It is a fact that Tetralogy of Fallot patients have a few surgeries throughout their lifetime. I am now a mother, I had a baby girl almost a year ago. My pregnancy was great, I was super healthy, I had a great labor, no complications. I sometimes forget that I have a major heart condition. I have felt very normal my whole life! I was a dancer for 13 years, a cheerleader in High School, I have always been healthy. Now with this next surgery coming up, as scared as I am...I am so excited to feel even better and healthier.
I want you to know that your babies will be great and healthy. As scary as the condition is, technology these days has allowed doctors to do these surgeries so easily! We are so lucky!
I have started a blog, where I am sharing my story. I will be keeping everyone updated with my surgery (before and after) and during recovery. I have also started a fundraiser, where I will be raising money to donate stuffed animals to Doernbecher Children's Hospital in Portland, where I had my surgery as a baby.
Please follow my blog to learn more about the fundraiser, and to stay updated with me.
I am also wanting to share stories that parents have about their children with Tetralogy of Fallot. If you are interested in sharing your story, please email me @
Stay strong and positive!


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Tori - posted on 11/24/2013




I know that this was posted a while ago, but am hoping that your surgery went very well and that you are now recovered and feeling better than ever. My little boy was born in 2012 with the same condition and i have never spoken with anyone that has the same. He had open heart surgery earlier this year after his blood ox levels plummeted to 43% but although it was the most traumatic 4 weeks of our lives, he is amazing now and just wanted to thank you for putting your story up..he was so ill and i feared for his future and how it would affect his life, but now i feel i can relax and enjoy him growing up. Much love and thanks xx tori

Anne - posted on 01/15/2011




Hi I too had TOF as a Child. Mine was in 1963, I was 8 years old. Dr. Tabor and Dr. Lamb at Henry Ford Hospital in Detroit Hospital. When I was in labor for our first daughter 27 years ago the DR. had never had a Post op TOF patient.( neither had the hospital). I have never needed any other surgery. I am 55. I will keep you in my Prayers. If you would like to keep in touch just message me from my profile page, or add me to your circle.

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