ASD and no surgery scheduled

[marisa]

When Laura was born, she was seen by a cardio in the hospital and I was told she needed a follow up at around 4 months and then probably at 1 year. They said she had a "hole" in her heart and if it did not close, they would have to close it. I am sure that the dr gave me the correct terms, but at that time all I heard was "she has no resrictions and is otherwise healthy". She went to her 4 month checkup and they did an EKG and listened to her heart. Dr said that she would need to come back at 1 year and have another EKG and a echocardiagram (sp?).

Well, we went for the 1 year check up yesterday. The EKG was fine and the dr listened and said all sounded good. She had the echo done and the dr came back in and said she would need surgery. I was not shocked, but I was a little surprised. Right before the echo the dr said she probably wouldn't need to come back til she was 5 years old.

The dr said that they will not due the surgery until she was 2 or 3, but by age 3. She went on to explain that the hole is substantial, if they would operate now she would need open heart. If they wait, it was close some and they may just go in with a catheter (sp?). Laura still has no restriction and is growing great. She was 6lbs 10oz at birth and is now just over 23lbs. She is very healthy with the exception of having bronciolitis (sp?) and spending 2 days in the hospital with it. She recovered very quickly from that too and her ped said it did not have anything to due with her heart (I asked this when she was hospitalized).

So, I guess what I am asking is: has anyone or do you know anyone who has had ASD and not had surgery right away?
I just want to add that her dr is at CHOP.

Thanks for any input.

[kristin]

Marisa~ What you are saying is right in line with what we learned regarding our son's heart. (He had a complete AV canal, which required surgery much sooner, and no chance of doing it through catheterization, so I don't have first -hand knowledge of an ASD.) But, it is my understanding that an ASD allows children to grow and thrive, most of the time, delaying the need for repair.

It is fortunate that your daughter is healthy and will be stronger and older before the surgery is required. That will help immensely!! It sounds like your daughter has a really strong and efficient heart, which is probably why you got the unexpected news AFTER the echo.

My recommendation to you would be to do just exactly what you are doing... collect as much information as you can in the months leading up to the repair. There is so much to learn (and of course worry about, ) but we found that the better we were educated, the less surprised we were when the time came for the surgery.

Good luck and keep posting updates!

[wrblack]

Am blissfully ignorant of ASD repair. And did wait until somebody who knows what they're talking about replied, before butting in.
We've always had good luck with doctors at CHOP, haven't yet met one I didn't like or have confidence in. Thought the cardiologist who checked Charlie, Dr. Richard Donner, could have had a little more interest in patent foramen ovales, but that's a minor quibble.
Do know of a young man, now about 11 or 12, who didn't have his ASD repaired until he was about 10. He's doing fine. Early days they thought his ASD was small enough that it might close or not need any procedure. As he got older, bigger, more active, panel of docs agreed it was time to do something. He had "multiple fenestrations," small holes but more than one. They tried to use an experimental Helex Occluder--sort of a non-self-centering umbrella device. After it dislodged twice, they went with the old style Amplatzer, covered all of the larger hole and most of the smaller. Even with all that, the catheterization procedure only took about two hours. And I'm pretty sure the recovery time from cardiac catheterization (now I did have one of those myself) is usually a whole lot less than recovery from open heart.
Fixing small ASD by catheterization instead of open heart has been around for several years now. Think it started out at places like Pittsburgh and Sick Children's in Toronto but seems fairly widespread now.
I read of a kiddy heart surgeon saying that catheterization is elegant on the outside but ugly on the inside, while open heart is ugly on the outside but elegant on the inside. An interventionist cardiologist might have a different take on that. And I think some ASD's are too big to fix by placing an occluder by catheterization.
Think what I'd want is really good pediatric cardiologist who could explain all the pro's and con's and make good recommendations. But I think I'd be inclined to go along with not being in any hurry, as long as that was deemed wise. And I think I might welcome the catheterization procedure over open heart.
Whew, that was a lot from somebody who doesn't know anything. -- Bob

[justinsmom]

Justin also had the ASD not repaired-mild to moderate in size. He still has the VSD which is getting smaller. When he was about 2 1/2 it just closed up on it's own . Neither hole caused any problems, he was gaining and thriving with the exception of the hypothyroid that is.
We were also told in the beginning that if it didn't close he would need surgery but they would wait til he was older and stronger and then the fact he was not exhibiting any complications or setbacks from it. By being able to wait it allows the child to get stronger and at the same gives that hole another shot at becoming smaller. Remember the louder it sounds the smaller it's getting. We still have to go yearly since the VSD is being a little bit more stubborn.

[marisa]

Thanks so much for the feedback. I was so busy focusing on Laura's OT, ST and getting PT, that I put the heart thing on the back burner. I felt so ignorant when I got the news and it seemed like most babies got their surgery right away. Not that I want or am looking forward to heart surgury.

I have been asking questions and doing some research and the route we are going seems to be the right one. I am glad that we have time on our side right now because I need to "invesigate" this dr and others so I have the best one for my girl. It is not like we are talking about stiching up a cut or something, KWIM.

So so happy to hear of Justin's ASD closing!!!! Maybe my bean will do the same!!

[maryc]

Hi, I am new to the site and have 3 kids, the youngest of whom, Anna is 16 months old, has DS and an ASD. Anna was born with an ASD, VSD, and PDA. The VSD and PDA closed on their own, but the ASD is still there and will have to be repaired. The plan at this point is to wait until Anna is over 2 and then to assess the situation as to whether it would be better to do surgery or a catherization. Whatever happens, it will be done at NY-Presbyterian. Our cardiologist said that the defect doesn't really affect Anna at this point, but that if left unrepaired would lead to pulmonary stenosis, and eventually (at about age 30) heart failure requiring a heart transplant. Their viewpoint was that it is better to let the child develop through babyhood and then to do the surgery when it would be less of a setback on their development (plus the heart is bigger and easier to deal with). Anna is 33" and 20 lbs 6 oz. and has been growing normally. Hope this helps.
Mary, mom to Libby (12), Alex (11), and Anna (12/12/03 DS).

[ashleysmom]

Marisa,
I am Annette from NJ. Who did you use for a card. Dr.?
Ashley just went on wed. at 9am to Dr Gidding in Voorhees. Here is our story:
Ashley was born on 12-3-02, We are told in the hospital she has a small ASD that would maybe close on it's own and to NOT worry. He told us to come back to his office when she was 4 months. We did. Dr. Giddings told us that he grades the hole 1-8, a size 4 hole and up almost always needs repairing. Ashley has a 5+. He said to come back in 1 yr to see if it closes any. If it did we could possably have the rest closed with that cath. thing? We go back the next yr(which was last March 2004) The hole has closed some but has left pin holes all around, so it was not small enough for the cath. He told us to come back again in 1 yr and we would talk about the type of surgery Ashley will have in June of 2005,so we went back on Wed. to find out the pin holes are all closed up and the hole is almost closed as well. The Dr. was VERY shocked to see such improvement in 1 yr. He said it will probably finish closing on its own. We will go back in 3 yrs and if the pin hole is there he will be able to close it with the cath. He claims it is so simple, it's just like putting a filling in a cavity!!
I think you'll be fine to..
Good luck

[marisa]

Annette, my Dr. is Dr. Bhargava and she is at The Cardiac Center at CHOP, NJ section. We go to the office on Laurel Oak Rd in Voorhees. I didn't see your Dr.'s name on my card (there are 5 names). Is he at CHOP too? We were there on Wed. at 9:30. I didn't see any kids with DS while I was there ... I usually take an extra look at any specialist office.

Thank you all for sharing your experiences with me!

[ashleysmom]

Marisa,

Dr. Gidding is from Dupont Childrens Hospital, They are located off White Horse Rd in Voorhees

[ashleysmom]

Marisa,
Not to get off subject but have you ever eaten at Victory Lane? They have a great breakfast Buffet only on Sundays. I am thinking of treating myself means dh is working.

Happy Mothers day.

[logansmom]

Our son, Logan, is 26 months old and has an ASD. Like so many of you, he has been monitored every 6 - 8 months since birth. We were told by his cardiologist at Riley Hospital for Children (in Indianapolis) that he was a good candidate for using a catheter to close the hole rather than open heart surgery. He explaining that the surgery is much easier on the child (overnight stay in most cases) if it can be done with a catheter. In order to be a good candidate, the child must be relatively healthy and the hole must be within a certain size range (not too large). According to our cardiologist, the most important thing is to make sure that the surgeon is experienced. This surgery has been around a while, but it's not as "established" as traditional open heart surgery. Now that we're planning for Logan's surgery this summer, our cardiologist recommended our surgeon -- he was involved in the clinical trials for this procedure and has done more of them in Indiana than any other surgeon. It's still scary, but we have to trust that it's the best thing for Logan.

Kim and Logan

[marisa]

Annette,
I hope you had a nice breakfast at Victory Lane!! I was there once for the buffet and we really enjoyed it. I always forget about that place and it is right down the road. I live in the neighborhood behind the Shop-Rite on Rt.73 in Berlin.

[ValerieC]

Marissa,

My daughter Alethea is 20 months old and has ASD, VSD, and PDA. In addition to that at her 1 year cardiac check-up Dr. Barghava found an aortic valve weakness. We are waiting as well. We saw Dr. Barghava when Alethea was diagnosed at 2 weeks old with DS and then at 1 year. We won't see her again until Alethea is 2. At that point we'll know more like hole size related to heart size. That way we know whether open heart or catheter is necessary. My Pediatricians have been great. I've cried in their offices about the holes not getting better as thought and they have comforted me as well as assured me about cardiac surgery successes.

The plan for us right now is to wait until Alethea is close to 3 before surgery is discussed further. She has no restrictions either. Dr. B. told me the reason they do surgery before 3 is because the risk of infection reaching the heart increases significantly at 3 when all teeth have finally come in. I guess heart infections come from the mouth. At this point the risk of infection reaching her heart is minimal (from my understanding).

Looks like we're in somewhat of the same boat.

[marisa99]

ValerieC,

Wow, I can't believe you have the same Dr. as us. Small world, huh? I hope you keep us posted on her progress as it looks like she will be going back in a few months. We go back in November for another check up. Laura will be 18months then.

(I used to post as "Marisa" until the board update)