I’m 5 months pregnant with my second child due in August my first little girl and when we found out her gender they also told us she had some heart problems. It’s called tetralogy of fallot and it scared me and my significant other alot. I was wondering if any other mommy’s in this group have dealt with this and how they stopped freaking themselves out about it. We have to wait 4 weeks to get another heart ultrasound to see if her aorta valve gets bigger which will decide when she will need the heart surgery. This is all new to me because my sons pregnancy was super easy without any complications, with this pregnancy it’s been alot of problems. In March I was diagnosed with dvt blood clots in my leg which makes this all even more scary to me since I’ve been on blood thinners since then and will be till after my due date. Any advice would be much appreciated
Help a mama out and respond anonymously on our forum. Has anyone elses baby had tetralogy of fallot?
My little sister did and she required heart surgery most kiddos do require atleast 1 or 2 surgeries throughout their life knowing it is there is the most important you will have a hard journey but it’s kind of common and Dr’s are good at fixing them
I was born with it hun. Was operated on when I was 17 months old. 43 now. Pm me if you likexxx
Join any of the CHD support pages! Lots of other TOF Moms in there to talk to. My nephew was also born with congenital heart defects. If you need to ever talk to someone w a lot of experience, my younger sister is a great person for that!
My son had Tof, ventricle septal defect and pulmonary atresia , he is 12 now and doing brilliant thank god.
My son does. He’s 12 almost 13. He had his first open heart surgery at 5 weeks old. He is in perfect health now. No restrictions at all. There is a TOF group here on Facebook.
My brother had this and with corrective surgery he is healthy now still has check ups but with the advances in medicine since 97 I’m sure it is even better. My husband’s aunt with Downs also had thus but she is 42 so medicine wasn’t as advanced then.
My daughter has TOF. I didn’t find out until the morning after her birth (she was born the night before) when she never was brought to my room and the pediatrician came in and asked me if anyone had been in the talk to me. Very traumatizing for me. Anyway, long story short. We were not allowed to let her cry as an infant, she was literally attached to my boob and never out of my arms until she had open heart surgery at 2 months old. She is 17 now. She will have another surgery soon but we are hoping her health holds up and we can push it back until they can do the surgery through her groin as opposed to cutting her open again. Her doctor was very conservative and she was not allowed to play sports until a couple of years ago and even then she was only allowed to play volleyball. You wouldn’t have ever known she had a CHD growing up (and now)as she ran around and acted like any normal healthy child. She was and is the biggest worry in my life. The worry doesn’t end or go away but I know from her yearly cardiologist appointments that she is doing well. Every TOF patient is different.
I’m sorry you are going through this. I know you are terrified, there are many support groups out there and I recommend joining some. 
Talk to your Physician about your fears. Research to get some knowledge about the condition and please pray to God for strength.
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Mine was. Operated at 10 months old and is now 25.
Don’t Google it… it’ll make it worse than what it is… I don’t have any advice on that other than that. But my 2nd and 3rd had single artery umbilical cords…