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Living With Congenital Heart Defects by Ben's Friends

ASD/Septal Defects - Aortic and Vessel Defects - Single Ventricle Defects - Tetrology of Fallot - Transposition of the Great Arteries - Valve Defects

Living With Congenital Heart Defects

9 Year old son just diagnosed with a large ASD

My 9 year old son was just diagnosed with a 18-20mm ASD. The right side of his heart is slightly enlarged so they are recommending closure. My husband and I have met with cardiologists and they said even though his hole is large they want to try the catheter procedure. He is on the cusp from what they consider a good candidate but still think its possible. We of course want a less invasive procedure done. However the thought of it not working and having to endure a second open heart surgery makes us nervous. He is such an energetic happy boy so naturally knowing what he will be going through is extremely difficult. We are meeting with the surgeon soon and will most likely be scheduling the procedure for some time in January. All of it is so overwhelming and scary. I would really appreciate to hear from more parents about the experiences they have had with their children. Most of the posts I have read have been adults. Its been helpful but if there are more children with ASD I would like to hear those stories as well. TIA

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I had a large ASD 2.3 cm. I had it closed in 2012. I was 43 years old that time. I remember the doctor wasn’t sure if he could close it by catheterization. He tried, and He did it. The procedure took two hours , and I was under general anesthesia. The doctor put amplathzer device to close it. This is my experience as adult. Your son will be fine, and I hope the best for him.

That is fantastic to hear! I’m beginning to feel more at ease with the idea
of thr catheter. I’m just praying that it works and he won’t need OHT. Did
you have symptoms your entire life or did you learn of the ASD as an adult.
The reason I ask is I’m considering getting myself checked as well.

Andee

I never had any symptoms on entire of my life. I found out during a random physical check up. The family doctor told me she heard a murmur by listening my heart beat. I went for an echocardiogram, and a TEE later on, and they found the huge hole. I don’t have any symptoms after closure too.

Wow…glad everything has worked out for you.

From what I’ve read, catheter can be used in ASD’s up to 3 or 4 cm, so he is probably ok for catheter procedure. I’m 35 and just found out that I have my ASD and right side of my heart is quite enlarged…moderate to severe. I wasn’t really symptomatic until just a couple years ago. While it can be a frightening and stressful time, the defect and associated symptoms progress quite slowly so you have quite a bit of time to find the right doctor, second opinions, etc.

Ok. I’m going to get myself checked also. I’ve had a normal ekg. How did
they find your asd? There seems to be a possible genetic link. My husband
has had a normal echo before but I’ve never had one. Not doing anything
about myself until my son had his procedure.

My son was diagnosised with ASD (16-17mm) and pulmonary hypertension (pulmonary pressure of 50-40s) at 4 months. He is 11 months now and hasn’t closed. I was told he is not a good candidate for catheter procedure not only because of his large size but because there not being enough tissue on each side of the hole to hang or mount the device. He isn’t doing so great - coughing, lung congestion, vomiting, back to back illnesses. So the cardiologist said she recommends doing the surgery to fix as soon as possible versus waiting until he is 3 or 4 years old. That was what we were contemplating on doing at first. So we meet with a catheter consultation on 1/23 to discuss that exam – he will be put under for a camera to exam his heart and get accurate measurements and whether there are any other complications like the veins. After those findings, we are going to schedule his OHS. We are staying faithful that God will find a way and there is nothing too difficult or big for Him. We will be praying for your son as well. Please keep me updated on his progress.

I know it all sounds so scary. Just keep your faith in God that all will be
okay. The doctors are not totally sure the catheter procedure will work due
it’s size and not knowing where the veins are. They are going to attempt it
first. Then if not then it’s open heart. We meet with the surgeon on Monday
so I have more questions like is there a test they can do to make sure
everything is good to go before. I know they say it’s less invasive but to
not be sure it will work its still a lot. Praying for your son. Be
thankful he won’t remember any of this when he’s older.

well, I can say that went through a lot of my life with occasional symptoms (which I was unaware of the reason and ignored them.) They did detect a murmur at birth. But I guess that in 1962 they just didn’t have the technology to detect these things. At 49, I finally did see a doctor after a noticeable mini-stroke. The ASD was right next to a valve, so OHS was the only option. I can tell you though, that aside from the “bravery scar” that I have, I feel better than I did before the surgery (it’s been almost 8 years now) So it’s a really good bet that your son, at his age, will do just fine, even if OHS is the route it has to be.

How long did it take you to return to your normal life style? Like exercising/sports? Are there any restrictions for certain activities that you shouldn’t do?

I was given restrictions just for first 2 weeks after closure. Doctor told me to do any activity after 2 weeks

I think you got catheterization done for your son around a year back. He must be doing well now.

We have to get out 14year old’s catheterization done in June2018. Did the doctor use amplatzer for your son? I would request you to please share your experiences.

I am considering minimally invasive vs catheterization. Your input may help us decide better.

Thank you so much.

Yes my son had the amplatzer put in back in February this year. He is doing fantastic. He has more energy and can breathe better than ever. His surgery was around 80 min. Recovery around 2 weeks. So far we have been happy with the procedure.