Childrens surgeons in the US???

[Emma]

Hi everyone,
A question for you all. A friend of mine over here has a daughter with pretty much the same condition that Janets Katie has. Lucy is very poorly and transplant wouldnt be any good now either. She is looking at valve replacement and the EC fontan i think.

Her mum's been told today that our hospital where we live can do no more for Lucy so was looking to send all Lucys data to the US to Roger Mee.

Unfortunately she has just this minute heard that Roger Mee is retiring by the end of this year so is not taking on anymore 2nd opinions/surgeries etc which sort of threw a spanner in the works!

She also thought of Edward Bove but he's not replied to her emails. Thats obviously left my friend quite depressed so I'm now on the case of a new surgeon to try.

Does anyone know of any other excellent heart surgeons for children anywhere in the US??? If you do, please let me know.
Thankyou
Emma
xxx

 

[Lynlw]

I would contact thomas spray at CHOP(childrens hospital of philly) http://www.chop.edu/consumer/jsp/division/service.jsp?id=71975
he is one of the very best surgeons and CHOP keeps getting ranked as #1 in the US for cardiac as well as children's hospitals. (i know alot of people go by those things,)
Justin just had him do his last surgery in May, Lyn

 

[Emma]

Thankyou very much for that Lyn!!! I'm on msn to my friend right now so have copied that over to her

Thanks again
Emma
xxx

 

[Lynlw]

he got right back to me when I asked for a 2nd opinion.(actually it was a 4th op, but who is counting lol Lyn

 

[Curtsmum]

Hi Emma, your friend must be living in a nightmare,i cant imagine what shes going threw. I hope you can find somebody to help. I wish your friend all the very best, let us know how she gets on.

 

[Lynlw]

my only fear wh=ould be if she isn't do that good, they might not let her fly, Lyn

 

[Emma]

the flying thing may be an issue i think. She flew to portugal from here recently to swim with dolphins (make a wish foundation) and went blue at the end of the flight - 3 hours or so. I suppose they mayhave to look into sailing however long that may take

Thankyou both for your help and concern!
Emma
xxx

 

[Lynlw]

the only reason I even thought of that, was there was a little boy in california, that had to go to mee and wasn't well enough to fly, so they had to rdrive from cal to Ohio, which I don't know if you know the US but it took like a week each way, poor family got there, the origonal hospital never sent the records they waited a few days, Mee didn'twant to send the kid to the cath lab with out seeing the records from the previous surgery, (don't blame him) SO then they had to drive back to california. and to make matter worse,, by the time they got home they found out Mee had given him notice dec 15 is his last day, so now I don't know what they are going to do,
IF your friend goes to CHOP, please give her my contact info we live about 20 min there, Lyn www.caringbridge.org/nj/justinw

 

[baldstuart]

There is a Dr. Hawkins at the Primary Childrens Medical Center in Salt Lake City Utah . He is the head of the Cardiothoractic Surgery at Primary Childrens. We have heard very good things about him Top notch. Maybe check him out on the web site for Primary Childrens Medical Ctr. Best of Luck in the search and our thoughts are with you.

 

[Lynlw]

. usually if people are looking for the top chd , they check Boston children's, Bove in Uof M, CHOP(spray) and until last year, Norwood (who was Justin's surgeon until last year, which I why I had all the 2nd opionons before Justin's last surgery). Mee was great for the double switch for LTGA and Loma Linda for transplants. there are other docs, BUT these tend to be the ones people travel to go to (we actually looked at Boston last year)
go to www.tchin.org and they have links to most the chd hospital web sites
Lyn

 

[cocoalab]

I have to put a plug in for Andrew's surgeons Dr. Mavroudis and Backer. I don't know how they "rank" but Dr Mavroudis is very skilled and I have loved and respected him.

 

[gijanet]

Sorry.........I've been sick thanks to my Katie!

Sorry.........I've been sick thanks to my Katie!

Oh, Emma, it breaks my heart to think of what Bev must be going through right now.

It would be highly unusual for Dr. Bove not to respond to an e-mail unless he is out of the town, state, country, etc., as he sometimes travels/lectures after the heat of the rush during summer..........and believe me, we kept him really busy this summer. I know if I don't hear back from him right away that he is out of the office. Then I always repost as I know his backlog must be tremendous. Please doublecheck with Bev and make sure that I gave her the right address. Better yet, here is his bio website complete with link:

http://www.med.umich.edu/cvc/mchc/bio/bio_bove.htm

Tell her to be sure and put "2nd opinion desperately needed" in the subject line and don't forward any attachments as I think the groupwise thrusts it into spam mail (at least our groupwise does at work unless it is a known sender).

I tell you that after researching and going through what we did this summer, there are not many surgeons I would trust out there with this combination of procedures. Katie was Dr. Bove's fourth, and I couldn't find any other surgeon out there who had even done half of that. Most had not performed the two in tandem at all. Mee was the only other one that I was even interested in getting a second opinion from, and he basically said that he couldn't offer any guarantees, and since we trusted Dr. Bove to stay put. So, of course, we did. Since Mee is out of the picture, the only other surgeons I would trust with my heterotaxic kid would be Dr. Spray, CHOP; Dr. Del Nido, Boston; and Dr. Hanley, Stanford, CA. Dr. Jonas (Washington, DC) is fantastic, but his new center isn't up to speed yet (per the parents who have used him/it). There are some other fabulous surgeons out there, but I just don't think they see these complex heterotaxy kids on a frequent enough basis to make the kinds of calls on the table that will have to be made.

'Course I am leaning toward Dr. Bove. If Lucy is needing the EC fontan and her common AV valve replaced, that is just what Dr. Bove did for Katie this summer. He is truly known for working miracles. I know. I have one living with me.

Send my love and hugs to Bev. I will keep them in my prayers. Please tell Bev to e-mail me if she needs anything. Hugs. Janet

 

[Emma]

Thankyou soooooo much for all the information everyone!! I have just copied this whole thread into an email for Bev to look through and I have no doubt she will be trying to make contact with these surgeons to see what they say.
Janet, I know Bev was going to contact you about Dr Bove so you might hear from her soon. Thankyou for your suggestions!!!
Love to you all
Emma
xxx

 

[Lynlw]

just a thought , but the first thing I would find out is IF she is allowed to fly, if she takes a boat like you think might have to happen, i would lean towards the hospitals, like boston (thanks for del Nido's name Janet, I kept getting brain blocked, w/ Locke since we were looking for a cath doc) or CHOP closer to the coast, Lyn

 

[KeegansMom02]

A great surgeon...

A great surgeon...

I'm sorry that I didn't see this post when it was written!!!

Keegan had his valve replacement at 2 1/2 months old by Dr. David Campbell at The Children's Hospital in Denver. I have to admit that this man lacked personality and was somewhat of a pecimist (sp?) but he did know his stuff!!! He was an awesome surgeon!!! Keegan's St. Judes Mitral valve celebrates it's 3rd anniversary on November 1st!

Good luck to this family! I hope that they find the appropriate person to "fix" this problem!!!

 

[JeffO]

In Boston

In Boston

Emma -

My surgeon was Ralph de la Torre, a really talented guy at Beth Israel Deaconess in Boston - he's also affiliated with Children's Hospital. He does a lot of Adult congenital stuff. Because of that, he works with some of the surgeons at Childrens in both locales. The assist on my surgery came from a Dr. Finn-Thompson, who is full time at Children's.

I would recommend either one highly.

All the best,

Jeff

 

[Paul_N]

Emma,

Like others, don't know that they would allow her to fly. In any event, I've attached a link to the University of Chicago hospital. Dr. J is the guy who performed my Ross and as you'll see, is pretty incredible. He has special interest in patients where other sugeons have stated there's nothing more they can do. The more research you do on this guy, the more amazed you'll be on his talents.

He entered colloege at 15 and graudated at 19. He's in his early to mid 40's today. Not sure what the total count is on the number of operations he's performed to this point, but it's in the hundred's. He's well spoken and has an unbelieveable bedside manner.

PM if you want any more details.

http://www.uchospitals.edu/physicians/valluvan-jeevanandam.html

Paul

 

[Emma]

Thankyou so very much again everyone for the information and links! Lucys mum, is at the moment, understandably, quite down and just trying to take all this in, but I am passing all this onto her and she is reading through it all and is very grateful for everyones help!!
I'll let you know what she decides to do and where they end up going.
Love and thanks to you all
Emma
xxx

 

[Lynlw]

I'm sure she already knows this, but if they aren't going to a childrens hospital, make sure the surgeon does ALOT of children I know a few of the centers like Cleveland and Loma Linda do both children and adult there are alot of really good heart surgeons in the US that if it was me or my parents I would go to in a min, but wouldn't let touch Justin since there is such a huge difference in CHD/adult CHD surgeons and surgeon used to doing adult issues.
feel free ot pass my email address on and when she decided what to do, we'll try to find parents for them to talk to that use that surgeon/hospital, Lyn

 

[Emma]

Thankyou soooo much for all this information again everyone!
Lucys mum is very down at the moment and trying to take all this in so myself and some other friends over here are going to get onto it for her (she has agreed to this obviously! lo). We are going to contact the surgeons you have suggested with Lucys story and her latest cath report and see what they suggest is the best next step.
Then i think fundraising for them to get over to you all over there will be the next thing. It'll be thousands but I'm sure we can do it!

Thankyou all again
Love Emma
xxx