Tetralogy of fallot?
MikesFavoriteWife
member
Does anyone have a LO with this heart defect? My DD recently had surgery to correct what we thought was a simple VSD and blockage below her pulmonary valve. After getting in there, they found multiple blockages along with an ASD. Also the VSD was much bigger than expected. Because of this her doctors have no doubt that she has TOF. My DD is doing very well. She had the surgery last Wednesday and is almost back to her usual self today. Thankfully we caught this problem when we did. According to her surgeons she was like a ticking time bomb. The pressure in her heart could have caused major damage. Its amazing (and scary as hell) that she never had any symptoms. I'm just so thankful that she is well and this is hopefully over with. Her doctors won't say never, but they feel that most likely my DD won't need any future surgeries. I hope they right right!
Anyway, I was just wondering what others have experienced. I know it isn't so, but I feel like my child is the only one who has this. Most people I know have never even heard of it, and according to both of her pediatricians they have never had a child with this type of defect. They have never even had a child that needed to have open heart! Is it really as common as they say?
Re: Tetralogy of fallot?
Hi there. You are definately not alone. My daughter was born with a heart murmur and when they did a cardiology follow up in the hospital 3 days after she was born they diagnosed her with Tetralogy of Fallot. She had to have surgery at 6 weeks old (she was supposed to have t o corrective surgery at 6 months to fix her VSD and her Pulmonary valve) but her oxygen levels were too low and so she had the surgery. She had a few complications after the surgery and we stayed about 1 more week than we expected. She is currently 20 months old and doing wonderfully- has not been on any meds since her surgery and goes for check ups every 6 months (then it will be once a year).. The cardiologist says she will problably have to have surgery on the valve because its a bit leaky (normal for children whove had this surgery) when she is a teenager or young adult. The nurse at my pediatrician office told me her youngest had TOF and is now 7 and doing well. Shaun While just won the Olympic Gold Medal for snowboarding had TOF as a baby and had two open heart surgeries before the age of 1.
You are not alone, CHDs are one of the most common birth defects. Good luck to you and dont feel alone, there are many heart mommies out there that know exactly what you are going thru.
Thank you for sharing! I'm happy to hear your DD is doing well. I really don't know any other CHD mommies so it is hard to not feel alone sometimes, but I'm trying!
My nephew was born with TOF, he has been fully "corrected" since 8 months and has no additional problems. He will have to be watched through his life, and they expect that around 10 or so he will need a valve replaced, but anticipate being about to do that by then without open heart surgery again. Our boy is really the best case for TOF. We are very lucky. We also live only a couple of miles from one of the best heart centers in the country (Egleston Children's Sibley Heart Center), which has made it much easier.
Glad your LO is doing well and that it was caught in time. I tell everyone to have as many ultrasounds as they can. It is so much better when they find it before the baby is born.
Tetrology of Fallot is actually a very common heart defect. Heart defects occur in 1 out of every 100 births...so yes, they are very common.
My son was born with TOF with absent pulmonary valve. The absent pulmonary valve caused MAJOR airway issues which caused his 3 1/2 month stay in the hospital after birth. But, he had his heart repair at 6 days old and his heart has looked great ever since. If it weren't for the floppy airways caused by the absent pulmonary valve, he would have probably had a much easier time before and after his heart surgery. We are still on oxygen and a feeding tube due to the airway issues, but he is going to be turning one next month and we couldn't be happier! He is a strong little boy!
You are definitely not alone and it is wonderful to hear your daughter is doing so well. There are many heart moms on this board...so you are in good company here.
The other posters are right about CHD being a common BD, ToF is not one of the most common of CHD's but it is seen often enough that it's not considered rare. The drs. thought my DD had ToF but she had Truncus Arteriosus, a similar condition in that it's not one fo the most common.
I just found out that Shaun White, the Olympic snowboarder was born with ToF so there's a good example that your daughter can grow up to lead a very normal life!