My baby girl diagnosed with Large VSD & ASD

[kunalsalunkhe]

My baby girl born on 30–JUNE-2010 has been diagnosed with following heart problems.  

Large Milaligned VSD with bidirectional flow
10mm - 12mm seccundum ASD with Left->Right flow
Small PDA
Neonatal pulmonary hypertension

Doctors have suggested mostly surgery will be required to close the VSD & ASD

As of now doctors suggested to wait for some time..doctors are also not able to predict the time of surgery...

doctors have called up ....after one month... for checkup ...

Is there any chance of automatic closure of these heart holes??

If my daughter gets operated ....then can she live normal life like other children ???? can she participate in sports ????

Does she need to take any extra effort/care in future for her heart ????

[mshanson]

I'm no expert, but my guess is yes, she'll definitely need surgery and that it's not likely they'll close on their own. Our own daughter was diagnosed with a small ASD, large VSD at only 3 days old (born June 7th), and she was diagnosed as being in early congestive heart failure at 2 & 1/2 weeks old. She's going to require surgery to close her holes, they currently have her on heart medication for fluid, and are hoping to get her to 10 lbs before doing surgery (currently only 7.5 lbs). We see the doctor every week or every other week for follow ups. Latest xrays showed that her heart was enlarged due to working harder.

What they told us is that after surgery, it'll be like having a new heart, and she'll be fine. She'll live a perfectly healthy, normal life - able to have babies of her own, participate in sorts etc, though she'll always have to be followed by a pediatrician/cardiologist - and that heat will likely always bother her.

Not sure how much they've told you, but you need to be very careful about her getting overheated, and extremely cautious about exposing her to germs - even if someone has a cold, what's a cold to you and I could mean hospitalization for her.

I've sent you a PM as well.  

[Jeffrey R Boris, M.D.]

Dear Kunalsalunkhe,

Without seeing your daughter’s studies, I cannot say for sure.  However, I can make some predictions based on what you have told me.  A large malaligned ventricular septal defect (VSD) will not close by itself, and will require surgical repair.  A large secundum atrial septal defect (ASD) of the size that you say also is unlikely to spontaneously resolve.  Therefore, at minimum, the VSD will require surgical closure.  However, if things go well with the surgery and there are no complications, she should do quite well.  We have been able not only to essentially normalize the lifespans of these children, but also to allow them to participate in sports without limitations.  She will require lifelong follow-up of her heart by a pediatric cardiologist, and, eventually, by an adult congenital cardiac specialist.  However, in good surgical hands, she should otherwise do well.

[protea]

I totally agree with the cold thing too.For the most part we stay away from anyone that is remotely ill.Our son has had pnemonia 8 times but that goes along with the GERD that he has.We were told that reflux is very common in children with heart problems.

[protea]

I would think they would do surgery on her.although they do wait until they are a liitle older.Not sure what the terminology is that our son was born with.He was dx with severe aortic stenosis,abnormal mitral valve.No-one ever discovered his heart murmur until he was 8 weeks old.I could tell there was something wrong with him as he slept most of the time.I know new babies are supposed to sleep but I knew that they were supposed to be awake at a time too.he was my second so everyone told me that he was just different,but I think mothers intuition told me there was something wrong.He was being treated for jaundice for almost 5 weeks and I was told to stop nursing and feed him formula.I was pumping the whole time as I didn't want to loose my milk.he was having weekly blood tests poor guy.he was still not acting right and was gaining a pund a week from the formula so I went for another opinion.To our surprise the new ped found a severe heart mumur and then it snowballed from there.He had his 1st surgery at 8 weeks old.They did the balloon angioplasty.Once the surgery was done the surgeon said that if we had waited another week he would have been dead.He was in heart failure all along and we never knew it and neither did the 1st dr. After 2 weeks follow up the ped.cardiologist couldn't feel any pulses below his waist.He was rushed back for ER surgery this time a big one.He had a co-arctation repair done.He was getting very little blood flow to the lower half of his body.He was in ICU for 6 days. He still sees the ped.cardiologist every 6 months.at the moment he has regurgitation / leakage of the aortic valve so they are watching that. He will not be able to have anymore balloon surgeries cause of the leakage so when we go back in Sep if there is severe leakage then he will have to have repair surgery.They are also watching the mean gradient on the aortic valve and if it reaches past 40 then anther surgery will be considered.They are hoping that by the time he needs the valve replacement he will be a teenager then he will be able to handle the surgery better and will possible only need another replacement when he is much older or never again.There are a lot of great supportive families on this website.I like to tell our sons story as we almost lost him and if we are able to help at least one family then it means a lot to us.we wish you all the best.