Open Heart or Amplatzer?

[SereneOne]

Anyone have any experience with these surgeries? My daughter will be having heart surgery next year. So far it is suppose to be Amplatzer. Could you tell me of your experiences? I keep trying to keep busy with other things such as the trip to Disney, but it is constantly on my mind.

 

[rebeccagpotter]

Our daughter had a cath procedure in which an amplatzer device was placed to close an atrial septal defect last year. She was 22 months old at the tie. The anticipation and fear were absolutely the hardest thing our family has ever gone through, but the procedure was ultimately very easy and the results have been wonderful. Our daughter was under anesthesia for 4 hours (had a bunch of testing about pressures in her pulmonary circulation as well as placement of the device). The first few hours after she woke up were tough, but she spent one night in the hospital and went home the following day. She has since had several follow-up exams and her heart muscle is back to normal size, her rhythm is normal, and all indications are that we are done with all of this terrifying cardiology stuff. Certainly I'm no expert, but I am glad that we went with the cath procedure rather than open heart. Our daughter had some pain in her groin where the catheters were inserted for about a week, but it was nothing like the pain of open heart surgery. She had some antibiotics at the hospital, but I think the only medication she needed at home was aspirin to prevent clotting. Not to take away in any way from how difficult the period is leading up to the procedure, but I hope you can take some comfort from knowing that I'm already forgetting some of the details a year later. I was also really worried about airport security - security is scary enough for a tiny little kid, and I really didn't want to have alarms going off and stuff. Turns out we had nothing to worry about on that one - the device doesn't set off the metal detectors. I'd be so happy to answer any specific questions you might have. Meanwhile, do try to find some joy in your time with your daughter before the procedure. A Disney trip sounds just right.

 

[SereneOne]

Thank you for your reply.

Meg has VATERS/VACTERLS Association, an acronym for multiple birth defects. She has rib/vertabrae anomalies...ribs that are fused or missing, ASD, multiple holes in her heart...had surgery on a tethered spinal cord...she has one "good" kidney/multicystic kidney...she had hypoparathyroidism and has Reactive Airway Disease.


We are hoping for Amplatzer, but her cardiologist thought she might have to have open heart because two holes are 8mm and she has several smaller. But MUSC says they can still do Amplatzer. She will see her cardiologist on Oct 8th...I will know more then, it has been over a year....just wanting to know from parents that have been there...thank you for taking time to share your experience.

 

[pugdog]

I work in the cath lab here at the Childrens hospital in MN. We put in several a week and they are much better then open heart as far as recovery goes.
Depending on where and how many holes there are will make the determination on how they will fix it. So far the most holes we have closed was 4 with 2 devices. With the largest hole so far at 16 mm. In the 5 years that I have worked in the lab we have only had 2 kids that we could not put the amplatzer in and had to go to surgery instead.

They will have to do a cath to really see exactly where the holes are and how big they are. The echo gives them an idea but doing an angiogram will show them exactly where the holes are, how big they are and if an amplatzer will work. There needs to be a big enough edge of the septum for the device to sit on so it wouldn't move. They will also look at other measurements of the heart to make sure it will fit. During the cath they will also take some pressure measurements in the heart. Sometimes we have put in an amplatzer that was to small and had to take it out and put in a bigger device. We use a special balloon to measure the hole but sometimes it sits funny and the measurement we make is a little off. Just before we release the device they do an echo to see what kind of leak there is around the device and if it's to much they can take out that device and put in a bigger one. They are attached to a small cable that keeps them in our control until we release them.

All of the kids we do get placed on antibiotics and if they don't live in town will spend the night in the hospital. She will be in the cath lab 3-4 hours. The actual procedure takes only about 90 minutes from start to end but the prep time and post time fills up the rest of the time. She could have some pain from where we have to put in the sheath to do the procedure but that doesn't last more tehn a few days for most patients.

The device is made of Nitinol and some polyester mesh so they won't set off the detectors.

They Amplatzer company is just across town so we see the reps alot and even Dr. Amplatz comes around once in awhile. It's a very safe procedure for your daughter if she's a candidate.

Any more questions let me know.

 

[SereneOne]

I work in the cath lab here at the Childrens hospital in MN. We put in several a week and they are much better then open heart as far as recovery goes.
Depending on where and how many holes there are will make the determination on how they will fix it. So far the most holes we have closed was 4 with 2 devices. With the largest hole so far at 16 mm. In the 5 years that I have worked in the lab we have only had 2 kids that we could not put the amplatzer in and had to go to surgery instead.

They will have to do a cath to really see exactly where the holes are and how big they are. The echo gives them an idea but doing an angiogram will show them exactly where the holes are, how big they are and if an amplatzer will work. There needs to be a big enough edge of the septum for the device to sit on so it wouldn't move. They will also look at other measurements of the heart to make sure it will fit. During the cath they will also take some pressure measurements in the heart. Sometimes we have put in an amplatzer that was to small and had to take it out and put in a bigger device. We use a special balloon to measure the hole but sometimes it sits funny and the measurement we make is a little off. Just before we release the device they do an echo to see what kind of leak there is around the device and if it's to much they can take out that device and put in a bigger one. They are attached to a small cable that keeps them in our control until we release them.

All of the kids we do get placed on antibiotics and if they don't live in town will spend the night in the hospital. She will be in the cath lab 3-4 hours. The actual procedure takes only about 90 minutes from start to end but the prep time and post time fills up the rest of the time. She could have some pain from where we have to put in the sheath to do the procedure but that doesn't last more tehn a few days for most patients.

The device is made of Nitinol and some polyester mesh so they won't set off the detectors.

They Amplatzer company is just across town so we see the reps alot and even Dr. Amplatz comes around once in awhile. It's a very safe procedure for your daughter if she's a candidate.

Any more questions let me know.

WOW, thank you SO MUCH! I am feeling better about the surgery...and so thankful for the advances we have nowadays.

 

[kurgana]

While I don't know anything specific about this particular technique, my daughter had to undergo an open heart surgery when she was 3 months old (she had an AVSD and since she hadn't gained basically any weight since she was born regardless of eating very well they felt that it was essential to do the surgery ASAP). The 5 hours she was in the operating theater were the longest of my life and it is heartbreaking to watch them in intensive care full of tubes & equipment... She was supposed to be in the hospital for at least 10 days, we were out in 3! I hope you will be as lucky as us. She is now almost 5 years old, still tiny (she has Down's syndrome and not the best genes from my side of the family; we are short!!) but has not had any medical problems of any kind after the surgery.
Best of luck for you and family
Jo