Heart Defect surgery/procedure feedback request

[div_0305]

My DD, almost 3, has a large hole in her heart which needs to be closed. She has an atrial septal defect (ASD). The pediatric cardiologist said she is a good candidate for a patch (inserted through a catheter), and needs to have this done within the next few months. With today's medical technology, she would not need another procedure when she is older if we go this route over open heart surgery.

I'm in the DC metro area, and have been advised by an acquaintance to go to Children's National Medical in DC over INOVA, and if not, then to Boston Children's. Johns Hopkins was not recommended. Anyone had this procedure done in any of these institutions or have any feedback researching doctors? It's a fairly common procedure, so I don't think we need to go to Boston, and my perception is that Children's National seems highly regarded for this type of procedure.

[TwoBees]

I have not BTDT, but wanted to offer lots of hugs and P&PTs. Also, have you considered looking at Children's Hospital of Philadelphia if you choose not to stay in the DC metro area?

[AnnieW625]

lots of hugs coming your way.

I think LizzyWednesday had her daughter at a hospital in the Philadelphia or NJ area because her daughter was born with a heart defect and had heart surgery as a newborn. Hopefully she will see this and will be able to help you out.

[hellokitty]

Boston Children's is #1 for ped cardaic surgery, National Children's is ranked #30, and INOVA isn't ranked at all.

If you do a search for US News pediatric heart surgery ratings, you can find these rankings. My DH's line of work is involved with adult cardiac surgery, so he isn't really in tune with what is going on in the pediatric cardiac surgery. However, he did a quick search and that is the info that he found.

[daisysmom]

My BIL and his wife live in DC and they had a surgery for their son at Children's. They were very happy with it. Not heart surgery, but generally that hospital is very very very well regarded. We are in Richmond and actually considered going up there for another kind of surgery for DD. I have a close family member who is a dr at Hopkins and my father gets all his medical care there (kidney and prostate issues). But as you know, some hospitals are knows for some areas. If others are saying Childrens is the best, I would do that. INOVA Fairfax is well regarded too for other things (I grew up there, and many relatives are still there) but you want to focus on the cardiology. Good luck though. On another post I relived our surgery decision for our 5 year old last year and it just has me thinking about that a lot today --- so special thoughts for you as you go down a different path.

[hillview]

Boston Childrens is one of the best. We saw a neurosurgeon there for a while with DS2. We ended up at Mass General for surgery but living in the area I know a lot of children who have had prcedures at Boston Childrens.

[div_0305]

The top "device" interventionalist for ASD's is at Boston, but my DD's cardiologist said it's not necessary to go to him because she doesn't require such specialized expertise. I guess it was a bit difficult for the dr. to discuss this since it would mean we are choosing someone else over her group's surgeon. Still, if you have access to the best, I feel like we should take advantage of that.

I saw the US News Report and was surprised Children's National came up number 30. We have found Johns Hopkins to be top notch for other stuff, but it's true, you can't be the best in every subfield.

To go to Boston, I would probably not have any local emotional support apart from DH, and he can be unpredictably nervous and clammy. But I think I'm a pretty strong person on the other hand. Lots to think about, and then actually make the second opinion appointment.

[daisysmom]

We considered traveling for my DD's sugery. The specialist who did surgeries for my DD's condition was in NYC, and there was another guy who is very renound who is in LA. We considered NYC and did an email consult with him.

We also kept thinking that our DD's case wasn't so difficult that we didn't need the best guy. My father kept saying that we should travel to get the best though, so we were torn.

Two things stuck with me though and convinced me to stay local (other than liking our local surgeon, as I am sure that I would have liked the guy in NYC too):
1- I didn't want the stress of flying there and flying back to have to handle. My DD had only flown once, loved it, but I am not the best flier and have anxiety with it. I didn't want DD to be overly excited, me to completely freak out, us to have to deal with delays, airports with germs, etc.
2- I wanted us to have someone to call and somewhere to go, immediately if in a day or 2 days or a week, she got an infection. I didn't want to have to deal with getting in to see someone new, trying to coordinate with the hospital out of state for records, etc. This was probably the most persuasive to me - I wanted to be able to drive to someplace in 10 minutes and say "she was operated on here and now this problem has come up".

We opted for MCV which is a teaching hospital here. Not nearly as good as Hopkins but I really think our surgeon was the best we needed. Of course as I type that I do realize that I would not be saying that if we had had a problem or mistake. And that is the hardest thing, you want to pick the best person assuming that the surgery actually doesn't turn out to be easy.

[cuca_]

My DD2 has ASD and we considered doing the same procedure you are considering. In the end, we have not done it, because DD2s hole has been closing up since we started monitoring when she was an infant. We did discuss the procedure with the Dr. during one of or first visits and it sounded like a pretty simple intervention. At the time they told us she would have to spend only one night at the hospital. DD's doctor was at Morgan Stanley Children's Hospital in NY. I did not meet the whole team, but I absolutely loved her cardiologist and would most likely have had the procedure done there. However, for such a short recovery (assuming that she would be able to travel within a couple of days), I would consider travelling.

I quickly looked at the US News rankings, and it according to the score card that Children's National receive, they have a high volume of catheter procedures. It seems like they fall in the area of heart transplants (which would not be relevant to you) and reputation. Of course, I don't know if the score card reflects all the elements/factors considered.

I think for me the most important factor in considering a top hospital would be the level of expertise and familiarity with the procedure. Boston Children's probably sees a very high volume of these procedures, increasing their doctors' expertise. I would want a doctor who does these routinely and is very familiar with the process. However, the doctors at Children's National may be. Have you talk to them about the volume of procedures they perform? Is this pretty routine for them? If it is, then having it done there might be more practical for you in term of physical proximity to home and emotional support. If it is not routinely performed, then I would travel and go to one of the top institutions.

Good luck with your decision.

[lizzywednesday]

lots of hugs coming your way.

I think LizzyWednesday had her daughter at a hospital in the Philadelphia or NJ area because her daughter was born with a heart defect and had heart surgery as a newborn. Hopefully she will see this and will be able to help you out.

Yes! Good memory!

My DD was delivered at Children's Hospital of Philadelphia's Garbose Family Special Delivery Unit because she had been diagnosed prenatally with pulmonary stenosis, which is a malformation of the pulmonary valve in the heart. She had the first of three cardiac catheterization procedures when she was 12 hours old to open the valve.

The 2nd procedure inserted a stent into her PDA, which was sealed in a 3rd procedure. The 2nd procedure took place when DD was 6 days old.

The 3rd procedure re-ballooned the valve, sealed the stent and inserted a surgical mesh device to seal an ASD. The procedure was done in the morning & she was kept overnight for observation. She was 2 days shy of 18 months old at the time.

Her surgeon for all 3 procedures trained at Boston Children's, but he's at CHoP. He's very skilled.

If you have any questions about the procedure, the hospital, the surgeon or anything else, please let me know. I'll happily discuss them with you via PM.

[egoldber]

I would at least seek a second opinion from the cardiologist at Children's. They have a satellite office in NoVA, very close to Inova Fairfax. Although there are some procedures they can't do in all offices and the wait time for the Fairfax office can be very long. Younger DD had a small VSD at birth and we consulted with Childrens cardiology at the time.

Just be aware that the wait times at the clinics at Childrens in DC can be VERY VERY VERY long. We recently waited FOUR HOURS (were seen at 1:30 for a 9:30 appt.) but not in cardiology.

[sunshine873]

I don't have any advice, just wanted to offer hugs. My DD was born with an ASD which was classified as "moderate" in size and we were told to expect this same type of procedure once she was bigger (her docs said they wouldn't do it until she was preschool age - at least 4.) But suddenly last year, the hole shrunk drastically to the point where they thought the patch wasn't needed anymore. I'm looking forward to her follow-up appointment next month to see if they story is the same.

Prayers for you and your DD as you take these next steps.

[westwoodmom04]

Deleted, repetitive

[liz]

OP, I PM'd you.