Congenital Heart Defect

No personal experience with this; however, very good friends of ours had a daughter with some heart issues as a newborn and happy to say she is a super cute and a very healthy normal little 4 year old today! (she had holes in her heart; no idea what the medical terminology for that is- so I don't know if it's the same thing your baby has or not; she also had surgeries). It truly is amazing what those docs. can do today. and keep in mind, those little babies are stronger than we think they are.
I know it's not always how you imagine it for your 1st baby (or any baby for that matter); but keep each other strong, you'll make it through this just fine. good luck to all of you and God bless.

Hi R.,
I was born with a VSD and had surgury to repair it at 14months of age. That was in 1975 and now I am 33 years old with two kids of my own. Now that I have children (both heart defect free) I can't imagine what my parents must have went through with me. I spent the first year of my life in Childrens Hospital. At the time I was the youngest patient to ever receive open heart surgery and now they can do it to babies right away. It's scary, but your baby wont remember much of the truama if any that he/she will have to go through. Find a cardiologist that you trust and know that everything will be ok.

I know what you are going through. I found out that my son had a heart defect when I was 35 weeks pregnant. It was only a VSD but he had to have heart surgery. He had his surgery when he was 4 months old. It was very scary, but he came through it wonderfully. The scariest part of the whole thing is to see your little baby after the surgery. But babies are so much stronger than we all think they are. Can I ask who your cardiologist is and what hospital you are going to? Because that will make your whole experience. We had a wonderful cardiologist and surgeon that made us feel comfortable and told us everything, even if it was bad. My last thing I need to tell you is to not stress out too much. That will make it harder on your body and your baby. I know it breaks your heart that you aren't going to be able to take your baby home two days after you have her, but its what makes us stronger. My son stayed in the hospital for the first month of his life. It was terrible, but I know he needed to be there. Keep us posted on what happens OK, thats what we are here for is support. Good luck doll.

I don't have any experience with this particular heart defect, but I have a heart defect called Transposition of the Great Arteries, which is a fairly serious defect. I highly recommend seeing the cardiologists at Children's Heart Clinic in either St. Paul or Minneapolis. That's where I go and the doctors are amazing. My defect was corrected surgically when I was an infant and I have had no problems since related to the heart defect. I've also gone on to have three children myself, none of whom have heart defects.

I'd also like to recommend a website to you. It's actually for adults with congenital heart defects, but there's a board for family members as well as a general forum and you could find out tons of information and talk to people with the heart defect your baby has:

www.achaheart.org

You have to sign in, but it's free to use the message boards. You can do a search for TOF and find posts related to it. The people on the board are really nice and very willing to provide information based on their experiences. I had never met anyone with my heart defect and it has really helped me to see how other people handle their heart issues.

Good luck!

oh it sounds familar!! It is not the same heart defect my girl had but the surgery schedule is simular.
My daugther is now almost 2.5 and she is healthy. I won't go into the details unless you would like them but I will say that it is not going to be easy but you will get through it and most likely every thing will be fine. We were well taken care of at Abbott Perinatal clinic and hospital and at Childrens in Mpls. They are known as the best. As for you being freaked out about your baby going through it, he/she won't remember and it will be harder on you. It sound horrible but it would be worst if they found it later.