Anyone have ASD repair?

[girly]

Laney went to the cardio dr. today and they are going to repair her ASD. They are going to call me with the date and they are doing it by catheter(sp?) instead of open heart. Her hole is 8mm. She has some other heart issues, but none that will need surgery. Has anyone's kiddo had this procedure? I am nervous cause they have only been doing this kind od procedure for 15-20years. But I don't want open heart unless it is necessary kwim.

She will be havng it done at CHOP, the best Chilren's hospital in the country, so that eases my mind a tad.

[wrblack]

No firsthand experience with this one. But know of a couple of kids, one a bit older, who had occluders placed by catheterization. They did fine.
I think the catheterization procedure is now often regarded as best practice, as long as kid is appropriate case and good candidate.
We spent a lot of time hanging out at CHOP our first couple of years, but just a couple of visits with cardiologist and one followup echo. No real problems there.
These days we don't hang out at CHOP nearly as much as we used to--though I do need to make a couple of appointments. Going to CHOP is never all that much fun, but it's great to have it nearby when you have need of a good children's hospital.
Best wishes and keep us posted please -- Bob

[ALLISA]

Hey girly.....

You'll have to keep us updated as the surgery gets closer....let us know when you get your date.

Erin had open heart at 4 months. My mom had heart surgery about a year prior to that and hers was done with the catheter. So when our doctor first said surgery that was how I invisioned it....so upset when I realized that was NOT what they were going to do.

ANY surgery is upsetting.....so lean on us for support, etc....how old is Laney ?

Glad to hear you have faith and respect for this hosptital !

[logansmom]

Logan had an ASD repaired when he was 27 or 28 months old. It was corrected by using a catheter procedure. Technically, this was considered an outpatient surgery, but actually we stayed in the hospital overnight and left 23 hours after we arrived. Logan wasn't allowed to return to daycare for a few days and he was supposed to have close supervision on playgound equipment for a few weeks (they didn't want him to fall from a high distance . . . but we thought that was a strange requirement because there's always close supervision on the equipment at daycare).

The device that was used on Logan is called an Amplatzer Septal Occluder. Although our catheterization was performed at Riley Hospital for Children in Indianapolis, Cincinnati Children's Hospital webpage has a good description of the procedure that even includes little flash movies and graphic summaries. Check it out at:
www.cincinnatichildrens.org/health/heart-encyclopedia/anomalies/asd.htm

For us, the anticipation of the procedure was much worse than the actuality of it. I know how worried you are, but this procedure really is much easier than open heart surgeries and is preferred if it's an option (it can't be done with all patients).

Keep us posted as you learn more about when this will occur.

Kim, Logan and Carson

[Connie]

Collin was born with ASD and VSD. I was told they thought his would close up by the time the was 2 and no surgery would be needed. At his (what I thought would be) last appointment she pulled me into a little room to tell me he needed to have ASD repair. It was terrifying to me because Collin was asymptomatic and looked completely healthy.

Collin had the regular ASD repair by open heart surgery and let me tell you...this procedure was a BREEZE!!! He went in on Tuesday and was running the halls by Wednesday....I had to ask that someone either me or him be sedated because it was to nerve wrecking!!!

We were home by Saturday morning and back to the hospital by Sunday because him and his brother were playing too rough and he needed to have his forehead glued...but that is another story/thread!!!

Keep us updated on what is going on!!

Connie

[girly]

Laney wil be 3 in May and is scheduled to start school May14. I requested the date to be before that or at the end of June. I don't want to her to miss school because she will only be there a bit before it ends for the summer.

Connie, did they give you the option of catheter? Just wondering. I know Collin is older and that might not have been an option for you then.

thanks for the responses!

[Connie]

No, the catheter was not an option for us because Collin had more than one hole in his upper heart. His heart was more like swiss cheese or a doily so they actually had to use a patch.

Collin returned to school and all of his normal activities, except for PT and weight bearing in OT, within a week and all weight bearing activities using his arms with in 4-6 weeks because of his chest being cracked.

I can honestly say that the heart procedure was so much easier than I expected and I would do it again over having to have a T&A!!!

Connie

[cheyanne12]

I'm looking for information on this as well. We were just told that our three year old son will need to get his ASD and PDA repaired and we have the choice of either open heart surgery or catherization using a coil to close up the PDA and an umbrella like device for the ASD. Noah's ASD is 7 mm in size. He is very active and doing well, but I guess they don't feel waiting another year is going to change much. Noah is adopted and in the beginning we were also told the holes would close up on their own without any repair being needed. So we are looking for information as to what is best in the long term for our son. From what I understand the new devices used do not have long term results. I'm wondering if there is a possibility that the body can reject these devices. So you are NOT alone and we were told we can choose either late spring or early summer for our son's holes to be repaired.

[girly]

I just found this on the American heart Association website
www.americanheart.org/presenter.jhtml?identifier=3000101
honestly, it does not make me feel better about the catheter. I did not know it was not FDA approved and "investigational". Oh man, gotta call the dr.

[cheyanne12]

www.cincinnatichildrens.org/health/heart-encyclopedia/anomalies/asd.htm

I found some information that you might find beneficial... it even shows how they close this ASD using catherization. I hope this helps. The one they show is approved by the FDA, but the surgery is experimental at this point.

[girly]

Update: Spoke to the dr. this morning and feel so much better. She assured me that the device is FDA approved and that Laney is not part of any clical trial. She told me that the procedure is experimental on closing VSD, not ASD. She also told me that not all ASD can be closed this way. There are a numer of criteria that need to be met. The dr. is making sure I have an appointment with the surgeon prior to the day of the procedure so I can ask him whatever I want and have some time to think about what he says and follow up with more questions if need be. She stressed that she wants me to be comfortable with everything and understand what is going on. I feel so much better and we are proceeding with the catheter.

Sometimes having the internet and all this ifo at my fingertips is NOT a good thing. UGH!

I'll keep you all posted when the surgery will take place.

[wrblack]

You're right. Internet can be source of some good info, can also be source of some not so good info. Probably a very good idea to ask a medical professional about these things, maybe two or three, good medical professionals.
Even then the answers you get may depend on how you ask what of whom. I remember reading a children's heart surgeon positing that catheter procedure was neat on the outside but ugly on the inside, whereas open heart surgery was ugly on the outside but elegant on the inside. An interventionist pediatric cardiologist might well put a different spin on that.
And when a parent has to weigh the benefits of open heart along with putting their child on ECMO, well, maybe what you really need is a good, knowledgeable doctor with whom you can communicate and who you can trust. Even with CHOP docs, some are better than others when it comes to those areas.
Hope all the ins and outs get explained to your satisfaction and you can make a decision that you're comfortable with, well, maybe can't be comfortable with any aspects of heart repair, but have a fairly high level of confidence in your decisions and in your doctors.
Regards,
Bob

[cheyanne12]

I received an email from a pediatric cardiologist in Cinn. OH who was surprised that I'd be given a choice in 2007. He was all for the catheterization and said he's been doing it since the 1980's. I made an appointment to meet with both the surgeon and the pediatric cardiologist to get more information. It's going to be a long two weeks!

[cheyanne12]

We went to meet with a surgeon and a pediatric cardiologist... hoping for certainty. We left the hospital still not sure what to do... each dr saying his option was what he would do for his children. Having an option can be a nice thing, but it can also be very hard since you want to make the BEST choice for your child and the RIGHT choice. We were told by the surgeon he would have closed the holes when our son was two (he's now three). The ped. card. said we can wait 6 months if we want to.

[jennifer2005]

My son had ASD repair with open heart surgery and did very well. He was not a candidate for catherization. I hear the catheter is a better way to go. Open heart did my son well. Good luck!