3 yr old with ASD

hwest8 · 05-09-2002, 11:44 PM

My daughter, who is 3, has ASD, we have known since she was 5 mo. old. It is time now for her to get surgury. We were told of only 2 ways to repair it, then last week we spoke to another dr. who mentioned something else. One is the umbrella device to block the whole, the other is open heart surgury (cut all the way across her chest) the other is also open heart but called minimally invasive surgury. I know there are risks with any surgury. I just wondered if any of you are in or have been in this situation, or know more about these surguries. We go next week to talk to the dr again, but as a mother it is on my mind all the time and was just needing to talk with others who have been there too. THANK YOU!!

michellemom1us · 07-11-2002, 11:15 PM

Hi,
First of all good luck to you. My daughter had a large VSD which was closed when she was five old. At that time the only option was to cut the sternum. I would definetely explore the less invasive options with your cardiologist. My daughter has had some negative side effects from the sternum being cut. The rib cage healed a little bit crooked which has caused her back to have a hump on it and one shoulder to be higher than the other. She also has a bit of decreased lung capacity because of the twisted ribs. We are still grateful for the surgery that saved her live, but I think it is a good idea to look into other options. I wish you the best of luck. It is a scary thing, but the heart medicine is so good these days. Take care and if you want to talk more let me know. Michelle

GaryG01 · 07-12-2002, 07:21 PM

I can't give you any advice, but I can share your worries. My daughter, who turns 3 next month, is due to have open heart surgery a week after her birthday......she has Ebstein's Anomaly of the Tricuspid Valve. The whole thing has me worried, but......I feel that the Mayo Clinic (Rochester, Minn) is the best in the world, & that the surgery will probably go fine.

Still, 3 yrs old is a young age, but.......maybe old enough to bounce back from surgery quick. Keep us posted here, email me if you need someone to talk to about it.

michellemom1us · 07-13-2002, 10:18 PM

Good luck to you and your daughter with your surgery. I will be thinking of you and hoping that things go well. Let us know how things go. Take care, Michelle

hwest8 · 07-14-2002, 08:39 PM

we have been gone this week, in Nashville, she got her surgury done. She got an amplatzer device put in, she is doing great! You wouldn't even know she had anything done, except for the bruise on her leg where they did the cathederization. Even in recovery, the only thing she cried about was her sore throat, from where they went down her throat. She had surgury Wed. and is already wanting climb and play. She has been slightly tired, our first day home she just sat around and watched Tv, but we were all tired from the trip. I just hope she does good with this. Thanks everyone for replying.