Tetralogy of Fallot Online Support Group

We discovered during pregnancy that my daughter had TOF. She did well after a c-section and I was able to bring her home. I was terrified every single day. Doctors monitored her closely and at 4 months we prepared for her surgery and donated our blood for her. During our blood donation she started having tet spells while my mom was watching her. There is a special way to help a tof child through these spells and the paramedics were called and made aware of this when she was brought home from the hospital. well they didnt listen. I had to get on the phone and yell at them to watch my mom and do as she did. My daughter ended up being life flighted to St. Louis where they did her surgery. She is now 9 and her heart is starting to enlarge where she will need follow up surgery in a couple years. The fact that her heart is enlarging which causes irreversable damage scares me to death but I have faith in the doctors. Im hoping that I can find people that understand my fear and can help me through this with her. Im hoping I can also be of help with my experience to others. Tetralogy of Fallot is a beyond horrifing disease but thank god for technology and the advances that have been made.

Hi reedie74, welcome to the forum. My 4 year old daughter has TOF as well as my husband who is 33. You are absolutely right, this is a very scary diagnosis to have.

Im sorry your daughters heart is enlarging. Can you tell us what the exact cause is, Im very interested.

My daughters first diagnosis was something closer to tricuspid atresia, though things improved for her before she was born.

What I find interesting is the varying degrees of TOF and the many other abnormalities that can accompany it.

I wish your daughter well and thanks for sharing with us. Keep us updated!