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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

Amplatzer Septal Occluder

Hi. I am trying to get advice from folks who have been in similar situations, and perhaps some insight. My son, who is now 5, was diagnosed with a moderate ASD over 3 years ago. At that time it was recommended he have the defect closed with an ASO via catheter. I have spent 3 years speaking with different cardiologists, and countless hours reading medical reports, studies, etc. My son is asymptomatic, from the oustide at least... he does obviously have the left-to-right shunting that occurs with ASDs, however no 'noticeable' symptoms. I am aware of the great advances that have occured in the cardio/medical field, and those advances are still continuing. I have been reading alot lately about completely biodegradable devices, and others that are 90 - 95% biodegradable, where only the metal frame of the device remain permanently. However, I continue to have these concerns regarding the ASO, and most of them are long term. The most obvious one being that up to this point, there is no real long term (50+ years) data regarding side effects and possible complications... so in a sense I feel that if I go forward with the ASO device the effects of it years from now is completely unknown. I don't feel comfortable going through with that. The other main concern with the ASO is the event of erosion or perforation of the heart, which is (from what I gather) almost always fatal since there are typically no warning signs to these rare but fatal occurances. I have also talked with the cardiologists about OHS, and after much thought, I decided that just wasn't even an option. The dilemma I am facing now is this: If at this point my son is asymptomatic, and this procedure is 'elective' and preventative, do I risk it with the ASO as has been recommended or do I wait 5 - 10 years until the biodegradable devices are on the market here in the US? The way I am thinking of it, the biodegradable devices don't carry any of the long term concerns of the ASO because there is nothing there except the hearts own tissue. Nothing that can emobilize, or erode. My son is 5, so in 10 years he'll be 15, and it was my understanding problems don't arise with these ASD's until later than that. Would waiting longer to have it fixed be a detriment to his health? I obviously would love anyone's opinion on this. Just trying to cover all my bases. Thanks in advance to anyone with some insight.

Another idea is robotic open heart surgery. Have you looked Into It? It is still open heart surgery but does not require the sternum to be cracked to get at the heart. They go through the side of the ribs (slits) and sort out the closure that way - less invasive, quicker recovery, less bleeding and no devices need for closing the asd - they use a portion of the pericardium to close it.
http://my.clevelandclinic.org/heart/services/surgery/robotically-assisted-heart-surgery.aspx
Where are you located?

John, thanks so much for your reply. We are in Ohio, Cleveland is about 2.5 hours from us. I have heard about this type of heart procedure (using the Da Vinci Robot???) however I have not researched it much and am not sure it it is something that can be used in pediatrics. I have also read about 'beating heart' surgeries, where the patient doesn't have to be put on the heart-lung bypass machine. I am just really looking for answers.

Let me touch base with my heart surgeon right now and get answers to all of your questions.
Here are my surgeons details - all heart surgeries have their complications but mine was very rare - asd and bleeding disorder combo - and he managed it very well.
http://my.clevelandclinic.org/staff_directory/staff_display.aspx?doctorid=5752
He is the nicest guy around as well as one of the best heart surgeons in the world.
And yes I have heard of beating heart technique.
He is doing the latest cutting edge heart research.
http://health.clevelandclinic.org/2013/01/running-a-marathon-after-heart-surgery/

My ASD didn’t even begin to affect me until I was 16. But when it did, my quality of life went down hill rapidly. I had my ASD closed recently (I’m 28) The thing to consider in these situations is that you may get the “same old thing” device now that has side effects that are reported/known or you may wait and get the “best new thing” and let your child be the guinea pig for future generations. There will be side effects and risks either way. At least with the current devices you know what those effects will be and how to react to them. I’m not sure where you are considering to have the procedure but I highly recommend a teaching hospital especially if you decide to do something more groundbreaking. At least those doctors are continually performing research and in my opinion are much more knowledgeable. I had my procedure done at Rainbow Babies and Children’s Hospital (part of University Hospitals) in Cleveland Ohio rather than go to the Cleveland Clinic and it was a great decision. The doctors there were extremely intelligent, collaborative, and have a curious nature that pushes them to investigate through ongoing research. Best of luck to you and your son with this decision and the road to recovery.

Hi Lorax112
I believe that you are a very reasonable person and it is very wise that you have these thoughts!
My sister was diagnosed this Friday and we don’t know yet whether or not it is possible to close the asd with amplazer yet…we will know more next Friday after MR heart… it seems to be pros and cons either way…one is bigger surgery and the other we don’t know the long effects…I agree with karissa Lynn that it will take long time until u or anyone can feel safe with a new method since it will need to be tested many years and maybe it takes many years to come out…
I am a internal medicin intern and I have the same concerns that you have… Even though it is very important to do your own research still believe that u need to find a doctor with experience that you trust and ask them what they think is the best approach and then you take everything in consideration and decide,there is no right and wrong and there will never be…unfortunately our loved ones were born with this defect but fortunately both methods are very effective and safe…
hope you find a solution that u feel safe with!

My story of open heart surgery and amplazer...35 years apart

With all medical and surgical treatments there is uncertainty and I think you have to accept that. I had open heart surgery to correct an ASD in 1972 at the age of 14. I was fit as a flea before the procedure - very athletic (sprinter) and did a lot of swimming. The major procedure was done without a bypass machine but using whole body hypothermia - i.e. my body was cooled, heart stopped, repair done and heart restarted. It was done through a right sided thoracotomy (no sternal split). The whole thing sounds really barbaric now... but i was fine after about 6 weeks and back at school did well, continued with sports including scuba diving, and then qualified as a doctor.

But when i was nearly 50, having had two kids, I had a couple of dizzy spells and discovered that the repair needed revision - there were two small holes probably from the edges of the patch - and i had a significant shunt. They had probably been there for decades, since the heart was slightly enlarged and, looking back on it, i had never been too good at aerobic stuff like running more than a sprint. So I decided to have another repair and they used two Amplazer devices. Unfortunately I had major internal bleed following the catheterisation from the femoral vein (a very rare complication), so the usually minor procedure with return to work within 3 days turned into a major event, intensive care, a massive blood transfusion and abdominal surgery - i was off work for 3 months. BUT once i recovered from that I was fitter than ever. - i was astonished at how much more energy i had. I now run regularly - usually only 5km at a time, but i'd never really been able to do it before. My exercise tolerance is so much better now and i feel great.

My son also had an ASD which we knew about from birth, and was closed with an Amplazer when he was 4. He recovered well, was back at school within a few days and is fine now (aged 15). The long term effects of any of these procedures is not known until there has been long term follow-up. But then who knows what will happen to us in 50 years time, and how much medical advances will be able to deal with any unexpected problems? All i know is that my fitness and quality of life has improved having had the ASD fixed (again), and even though i suffered a very rare complication i do not regret having the procedure.

I guess my point is that there is no perfect answer, you have to decide what is right for you and your child.

Hi Karissa, do you mind me asking you some health questions? If you started having problems at 16, why did you wait 12 years to have it corrected? Was your defect corrected with Amplatzer? Do you have any long term health issues related to having the ASD fixed later in life? I do realize everyone's situation is different, it's just nice to talk to someone who has actually been through this. Thanks and best wishes to you.



Karissa Lynn said:

My ASD didn't even begin to affect me until I was 16. But when it did, my quality of life went down hill rapidly. I had my ASD closed recently (I'm 28) The thing to consider in these situations is that you may get the "same old thing" device now that has side effects that are reported/known or you may wait and get the "best new thing" and let your child be the guinea pig for future generations. There will be side effects and risks either way. At least with the current devices you know what those effects will be and how to react to them. I'm not sure where you are considering to have the procedure but I highly recommend a teaching hospital especially if you decide to do something more groundbreaking. At least those doctors are continually performing research and in my opinion are much more knowledgeable. I had my procedure done at Rainbow Babies and Children's Hospital (part of University Hospitals) in Cleveland Ohio rather than go to the Cleveland Clinic and it was a great decision. The doctors there were extremely intelligent, collaborative, and have a curious nature that pushes them to investigate through ongoing research. Best of luck to you and your son with this decision and the road to recovery.
Karissa, I believe I replied to you in the wrong section! I hope you are able to view my response. Sorry, I am new to these forums!

I had OHS in April. I had an ASD which was the size of about a quarter. I never knew I had it and I was asymptomatic all my life. I ended up with an enlarged right ventricle and pulmonary hypertension during exertion and never had symptoms. I spoke with two other cardiologists before I settled on the one I am currently with. They both recommended the amplatzer device but warned that there is a chance (though so very slight) of erosion and I was scared out of my mind. I ended up having it sewn together as I also needed to have a valve repair in the end. I am very glad I had the hole close in the way I did as I will never have to worry about the chance or erosion of the amplatzer device. I went with the traditional OHS as the surgeon said "do you really want me working on your heart through a tiny hole?" It was his opinion that that was not safe. These are my experiences, you will have to make your own decisions. But sometimes going old school is not a bad way to go.

My 4 year old daughter just had her ASO placed July 16. I did a lot of research myself bc this made surgery #10 for her (the others were for other medical problems). She showed no signs at all from her asd, but since birth her dr said between ages 2-4 would be the best time. We were also told if we waited to have the surgery, the asd would start effecting her. In my research I found it was more successful in younger kids (I don’t know why). Older patients seemed to have more side effects (ex. Palpatations). My daughter so far has had no issues. She was up playing the next evening. I think we made the right choice. We live in Ohio as well (Columbus).

Helen, what a great story. I am glad to hear you are doing well now. I think you are so right when you say, " With all medical and surgical treatments there is uncertainty and I think you have accept that." I think that has been a huge obstacle for me this entire time, just to realize that my child who is perfect in my eyes has to have such a serious and scary procedure. I just want to make the right decision and that is why I am asking advice from folks like yourself. To jlgf42, I actually considered OHS for a period of time for the exact reasons you spoke of. After doing alot of research and listening to the opinions of my family members, I couldn't justify putting my baby through that without it being absolutely necessary. If it were myself it would be a different story. And to chloe's mommy, I am so happy to hear your daughter is doing well after the procedure. Did you have it done at Nationwide Children's? That's where my son will have his, his cardiologist is Dr. Teske, but it is Dr. Holzer who will be doing the procedure. Thanks again to everyone who has taken the time to reply. Nothing is more important to me than making the right decision for my son.

Yes, like I said do what is right for your son and your family. All you have to do is keep the faith and feel comfortable in your decision and it WILL all be OK! I should have also mentioned that I am 43 years old and NOT a child. Take Care!

Thanks so much for your encouragement jlgf42. Best wishes to you and yours. :)

My daughter had her ASD repaired via OHS last year at age four. Hers was 13mm with an insufficient superior rim, so closure wasn't elective, and device closure wasn't an option. Is your son's ASD small enough they're saying he may not need to have it closed? Our daughter was asymptomatic as well, but we were told she would have significant issues, starting in her late teens, if the ASD wasn't closed, and that if we waited too long, the damage to her heart may not be completely reversed. I would encourage you to read the stories on this blog from those who were diagnosed later in life and get a feel for the complications they have endured. Doing so made me extremely grateful (although still completely terrified of the surgery) that my daughter was diagnosed early.

It doesn't sound like OHS is a consideration, but I thought I'd share our experience. The surgery was a Friday morning and lasted about two hours. She was only on bypass for about 10 minutes with no blood transfusion. I know this is not always the case. She was in the PICU about 24 hours, and while it was hard to see her with all the tubes in the PICU, they unhooked her from everything fairly quickly. She was extremely pissed off Saturday as, like your son, she was completely asymptomatic prior to the surgery. On Sunday, she announced she wanted to go the playroom, wanted to walk there herself and was busy all day visiting and playing. We went home Monday, with only ibuprofen for pain. On Tuesday, she was irritated we wouldn't let her ride her bike or play on the swingset. We kept her home from daycare for three weeks, and she was quite ready to go back. After six weeks, she was cleared for all activity. We just had her follow up, and her heart is healed, functioning normally and back to normal size. Her scar is about five inches long, but basically a faint white line.

Putting her through the surgery was the most terrifying thing I have ever done. I couldn't believe I was letting the surgeon do that to her. Everyone told me she would rebound quickly, but I didn't believe them. While I was upset she couldn't have device closure at first, she did so well, I know this was the right way for us. Many professionals told us age 4-6 is the ideal time for closure because they're old enough to handle the procedure but young enough to not be traumatized. I was also told they only do the traditional sternum incision on children because they need to be able to see everything clearly. One thing that made me feel better was the surgeon explained that he basically creates an ASD every time he corrects a different heart defect, in order to access the other defects. He then repairs the ASD. So when I asked how many he'd done, he said over 7,000.

Everything you're saying and asking about makes perfect sense. I know our experience is ours and ours alone, but if you absolutely can't get comfortable with the device, it's one perspective on OHS. Best of luck to you on your decision. I know it's difficult to make such an important decision on behalf of your child. Please let me know if you want more details. I'd also be happy to send you a pic from the hospital...you'd never believe it's of a child less than 48 hours after OHS.

Kcmom, thanks for sharing your amazingly insightful and inspirational story. I am so pleased to hear how well your daughter did and has never looked back. Kids are resilient.
Mine was found at 33 and I was asymptomatic as well. Mine was found randomly during pre screening for sinus surgery. They found right bundle branch blockage on my ECG and sent me for an echo and bam there it was my ASD. I was told something very similar to what KCMOM was told about having issues ten years from diagnosis but I was 33 not 4 or 5. Similar to KCMOM’s daughter I bounced back quickly. You are not alone - we are here to help you as much as possible.

We had it done at Nationwide. Her cardiologist is Dr. Backus & her surgeon was Dr. Holzer, both GREAT guys!!

Hi. I can give you and adult perspective as I was just diagnosed w/ ASD at 37. I was symptomatic and had dizziness fatigue pre syncope and PVC’s and pacs. It was awful for 2 years while doctors tried to figure out what was wrong. As soon as I learned about the ASD I knew I wanted it fixed. My hole was 18mm and was repaired with a helix device. I had repairs 11 weeks ago and feel better. My doctor choose the helix for me because of the risk of erosion. He felt it was a better choice. Honestly, I agree with you and think its very scary to have a “device” in my heart, however, the risk of OPS is equally as scary (my father passed 2 days after his OPS to repair a valve last year). So based on my personal experience OPS was not an option for me… At least not if a non invasive option was available.
I’m not a doctor, but I don’t see why you can’t wait? In some cases they holes can close on their own. I had 2 opinions (Hopkins and Children’s hospital in dc). And like you read a lot. My best advice is to research and go with your gut.
I have found a lot of support on the adult congenital heart association and Facebook had a ASD page that is filled with people with ASD.
Good luck!!!

I had mine done in october,they went up through my arteries,but they failed to tell me I would be a walking drug store when it was done,I always had low blood pressure now its high,,my heart rate goes up from 160 to 178 then ambulance to the hospital again,,I was born with the holes in my heart they told me,,then at 54 I get it done,I am not a big drinker but I did enjoy a glass of wine once and a while with dinner,thats a no no now,but thats not a big deal,,the deal is all these drugs I am on,,I hate taking any kind of pills and coumadin (warefarin)which I don't like,for God sakes thats what the kill mice and rats with,,so as u can see,,I think it is best to get all info,,which I thought they gave me,they said I would feel great when it was done,,all I know is,,the drug stores are making lots of money on me and the ambulances..and its not nice trying to live normal and never knowing when my heart is going to start racing and I end up in hospital again,so please get all the info u can before u decide.plus all the pills are causing other side effects that has put me in the hospital,,its very hard when I own my own successful business and never knowing when it is going to happen again

,All the best.



John said:
Another idea is robotic open heart surgery. Have you looked Into It? It is still open heart surgery but does not require the sternum to be cracked to get at the heart. They go through the side of the ribs (slits) and sort out the closure that way - less invasive, quicker recovery, less bleeding and no devices need for closing the asd - they use a portion of the pericardium to close it.
http://my.clevelandclinic.org/heart/services/surgery/robotically-as...
Where are you located?
I was hoping for this method for my daughter next year when she is four. But at this time they do not have small enough instruments to use this on children. :(