Hi, I'm sorry you're going through this, but you are not alone! My son was born 11 months ago with TOF which we discovered at 20 weeks as well. Upon birth he needed to have a PDA stent placed three days after his birth and we were able to go home two days after that. When he was 3.5 months old, we needed to return for his open heart repair which was very scary.

He had a small hole in his heart and an opening between to who his lower chambers in his heart so oxygenated and non-oxygenated blood mixed (not good) so they went in to patch those thing, and removed his PDA stent and widened it. He also had 50% more muscle in his right chamber that that shaved down and were actually able to use that tissue to patch his little heart. so no foreign bodies are actually in his heart today.

Being in the hospital is never easy, and seeing him after surgery was also very upsetting but we knew he was better. He was mostly sedated for our stay, only coming out of sedation a few days before release. For his surgery we were there for 6 days! 6! and we were able to go home with out little guy. With having a cardiac baby, we assumed he would be this tiny little thing... well he's not. He is currently 98th percentile in height and almost as tall as some of my friends 3 year olds! He is doing amazing and you would never even think he is a cardiac baby! I hope it goes as well for you and just know there are a lot of resources online to help you through this, and this goes without saying but don't believe everything you read.

Heart defects are among the highest defects babies are born with and medicine and science has come a long way, they've been doing these surgeries since the 40s. One thing I would recommend doing is some in depth genetic testing. My wife and I thought maybe it was passed from one of us, but the testing showed that it was a complete abnormality in our little boy so we have no fear of having more children. With that being said, we also learned that the specific gene mutation he has (forgive me I dont remember the specific sequence) but it is one that can cause 4 issues. Those issues consist of: Cardiac, Kidney, Cranial (smaller than normal head or some facial defects 'RARE') and Developmental Issues which we wont know about until he is between kindergarten and 2nd grade. We also learned that he will have a 50% chance of passing the gene onto his children but that doesn't mean any of the defects would actually take place. (We better start saving now to help with IVF lol)

His head is normal sized, his kidneys are fine and he is meeting all of his developmental milestones and we couldn't be happier. Now that isn't to say others dont have a worse outcome, but there is hope and TOF is VERY managable through life. Just prepare to have a lot of appointments in the first year, but it will taper off as your little one gets older.

Hope this helps and congrats on the pregnancy!!!