Hi ALL!
My name is Jenine and my daughter Claire is now 18 months old. She was diagnosed with an ASD when she was 6 months old after an episode of turning blue. Her doctor wants to close it with (hopefully) a helix device within the next year, and so I'm just starting to think about it and research. I see there are a lof of adults on here, but not sure if there are any parents of kids with an ASD? Any kids have this procedure done and was it a success? He thinks the helix will be successful, our only concern is that there are actually 2 holes - a larger one and then a smaller one right next to it. So, the helix will have to cover both. We have one of our 6 month appointments in a few weeks - is there anything I should be asking? I've done some research and met with her dr a few times, but i want to make sure i know everything about this that i can.
Thanks for any info you might have!
Research! Research! Research! My daughter was diagnosed last July and had hers closed via open heart surgery in November. During that time, I was doing as much research as possible to make sure that I knew everything there was to know about her condition. Alyssa also had 2 holes which is why she received a recommendation for open heart surgery instead of via cath. I really believe a second opinion is never a bad thing. Make sure that you have the utmost trust in her cardiologist (I'd research that too). Believe me, I understand every little thing you are feeling right now because I spent the second half of 2011 feeling the same way. But Alyssa recovered from her surgery amazingly and is completely back to herself....giving me a run for my money! :) Please feel free to ask, talk, vent anything that you want. Best of luck to you and Claire.
HI Alyssa's mom - thank you so much for replying to me, and for your kind words. I have been thinking alot about this recently, and its been weighing on me. Do you have any advice of where i should be researching or anything that you found that was extremely helpful? I have read about it online, watched utube videos (I did NOT watch the procedure - just a diagram of it) and i tried to research her doctor, but haven't had much luck on that. Can i ask how old Alyssa was when she was diagnosed and had the ASD corrected? My biggest concern is just that all the drs we see just seem to downplay the ASD. I have been reading that she could have some pretty severe issues if its not corrected, but did Alyssa have any symptoms up until her surgery? I dont think Claire has any symptoms - the only thing I notice is that sometimes her coloring looks off - like kind of bluish. I have been told that is normal and it could just be her skintone. I dont know. We will absolutely have a second opinion before the closure - I will see when the dr wants to do it when we go in 2 weeks. Thanks again for all of your help,
Jenine
alyssasmom said:
Research! Research! Research! My daughter was diagnosed last July and had hers closed via open heart surgery in November. During that time, I was doing as much research as possible to make sure that I knew everything there was to know about her condition. Alyssa also had 2 holes which is why she received a recommendation for open heart surgery instead of via cath. I really believe a second opinion is never a bad thing. Make sure that you have the utmost trust in her cardiologist (I'd research that too). Believe me, I understand every little thing you are feeling right now because I spent the second half of 2011 feeling the same way. But Alyssa recovered from her surgery amazingly and is completely back to herself....giving me a run for my money! :) Please feel free to ask, talk, vent anything that you want. Best of luck to you and Claire.
Hi Jenine, all the research that I did was on the internet, medical websites, etc. I found a lot of information and the good thing was most of it was consistent and that made me feel better. Alyssa was diagnosed at her 6 year checkup and had the surgery 6 months later. She didn’t have any symptoms whatsoever, but the holes were allowing too much blood to flow into the right side of her heart so it was becoming enlarged. If it was not repaired, it would have eventually caused her problems so it was such a blessing to find out when we did. It may definitely seem like the doctors are down playing it, I think I felt that way too, but I’m sure they are serious about it, just from a different view. This is your baby! I remember when we spoke to the surgeon, he was so laid back about the whole thing but I had to remember that he did this every day…this was just second nature to him. And as non-chalant as he was about the whole thing, I was so grateful to have him. I,m not sure where you are located. We live right outside of Boston so had pretty close access to some of the top hospitals in the world. You haven’t been able to find much on your cardiologist? I will try to find the link that I used when I was researching the doctors in my area. There seemed to be some good review sites. I’ll be thinking of you guys over the next couple of weeks until her appointment. I remember the feelings so well, the nerves, the fear…Claire is a little young to know what is going on around her but I had to explain each step to Alyssa. But i really believe, and i had 3 different doctors say this to me, obviously, you would give anything for this not to be happening, but if you are going to have a heart defect, this is this is the one that you want to have because it is so repairable. If I find the link to research the doctors, I will post it here for you. Good luck with everything - please keep us updated after her appointment. Blessings to you, Claire and your family.
Hi Jenine.
My daughter is about 3 years old and she had two holes in her heart too. Indeed, in recent check, it seems the small hole closes on its own and only one large hole left. What really troubles me now is the treatment selection. Have you considered a surgery? I am really worry about the metal device in the heart and the long-term outlook of the catheter. I am also wondering if there are any absorbable catheter instead of metal one.
So, we just went to the cardiologist on Friday, and he wants to schedule the closure in August, after she turns 2. Her hole is 15mm and the other one is slightly smaller - i think about half the size. The plan now is that she will go in to have the catheterization and they can do a trans-espohogeal camera to get a better idea of the hole and location of the 2nd one. At that point, if it looks like the device will close both (he thinks it may overlap - thats the part that worries me), then he will put it in, if not, then she will come back for surgery. I know this is bad, but i am feeling like I almost want to just do the surgery instead of putting her through the first procedure and it potentially not working (and I just have this gut feeling its not).
Alyssa's mom - did they recommend doing the surgery outright or did they want to do this type of plan for Alyssa too? I wonder why they just dont recommend 2 devices? Thank you also for your kind words and encouragement - it really comforts us to know that were not alone ! How is Alyssa doing now? Do you remember the size of the holes that Alyssa had? The dr said the large one is 15mm - I just wonder what the range is that they find. Also - do you have other kids? SHould I be concerned that they may have it as well? Our dr's keep saying no, but then I've heard otherwise from people I talk to.
One father - Im not sure what you mean about he long term effect of the catheter? I thought this is just what they insert to get the device in and then they remove it? Does it stay in?
Hi ClaireBear'sMommy - when she was first diagnosed after her first echo, it was thought that she had just one hole about 8mm. They were (and I was) hoping we would be able to do the catheterization. She had a second echo done at the cardiologist and that is when they discovered the second hole which was a little bigger, about 10mm. At that point, they told me that she wasn't a good candidate for catheterization because they didn't want the entire septum wall to be a "device" and then have issues after and end up having a second procedure. Although I was devestated that she was going to have to have open heart surgery, I did understand what they meant. So...
I absolutely would not feel bad about wanting her to have the surgery instead of 2 procedures - Its almost the same exact situation as Alyssa's! Why would they want to put her through such a traumatic event twice? I would most definitely voice your concerns over this. Poor baby.
I have a 9 year old son - who also has a heart murmur (which is how Alyssa's doctor found her ASD). His doctor told me that Danny's murmur was very different from Alyssa's and he knew exactly what was causing it and that this is not a genetic issue. But he ordered an echo for him anyway to make me feel better. I highly recommend it just for your own peace of mind.
Alyssa is still doing fantastic so if Claire does end up having surgery, as scary as it is, you just have to remember that she is in good hands with the surgeon and they have the power of youth on their side.
Keep in touch.
Kathleen
Hi Jenine! My daughter Emma had an ASD closure last January at the age of 9. We didn't know about the ASD until she started having systems. Her chest would puff up on one side and be in pain. She was also experiencing tingles and numbness in her left arm. The surgeon told us he would have waited to close it any way because she is so tiny. Once the camera was put down her throat there was a second hole and the first hole was much larger then detected through the eco. Her heart was literally breaking in half because of the weight of pooled blood in her one chamber. She ended up with a 6 and 22 helix device. They were sandwiched together. We still had a leak 10 months after the procedure so we went every month to the heart surgeon. In early October they told us the leak was finally sealed meaning the muscle finally grew and sealed the opening. Just after Christmas we went back and now there is a leak again. Meaning the devices shifted. We go next week to see what the next step is. I question whether this should have been open-heart from the get go after finding the two holes. The surgeon is wonderful and actually studied under the man who invented the device. I just had a gut feeling we would be back to square one with the second hole being discovered.
Your daughter is much younger and maybe her hole is smaller. I know there are no words to comfort you right know but just believe. The surgery was nothing for my daughter. The hardest part for her was the IV and the pressure bandages being removed. For my husband and I... well sorry but it was HELL. We got through just like we will get through this next phase as well.
Hope this helps some or at least gives you some more questions to ask.
After reading through more of the posts.... Emma's devices were put in by going through both legs. Then the surgeon was able to guide both devices to mush them together. He called it a gordita. Now my Emma has an entire device down the middle of her heart along the back side. This is why I think we are having issues. It was just too large of an opening. The surgeon did keep Emma out of physical activity for about three months when they can normally return in just a few weeks. Hugs to you and your family.
Hi Jenine :
The metal device will stay in the heart for the rest of the life time. This type of device has just been widely used for about 15 years. So, I really worry about the long-term output of the device. For me, We have an Echo and the hole is 8mm. We made a decision to wait for one more year to see what is going to happen. I thing the Cather procedure should be for an older age.
hi clairebear'smommy... how is your daughter doing? did the helex work well for her ASD's? my son is in a similar situation and i am really hoping they are able to use the helex over the amplatzer cribiform.