Childrens surgeons in the US???

[BAV Pt's daughter]

Dr. Jaggers at Duke University is an excellent children's cardiac surgeon. We actually consulted him re: mom's surgery also, as he does 1/3 of his surgeries on adults also. This is in Raleigh, NC, they are the #3 heart hospital in the US I believe. If you are interested, I still have a phone number for his office, just let me know and I'll send it to you. Good luck.

 

[Emma]

Thankyou Angela,

Would love a contact for the surgeon and any others that people have mentioned too - it's be very handy as we want to get onto them asap. Can get copies of echo tapes etc as well if they need them.

Thanks again
Emma
xxx

 

[BAV Pt's daughter]

Thankyou Angela,

Would love a contact for the surgeon and any others that people have mentioned too - it's be very handy as we want to get onto them asap. Can get copies of echo tapes etc as well if they need them.

Thanks again
Emma
xxx

I'll send you a PM with all the info, give me a few minutes to get it together...

 

[Emma]

Thankyou very much!!!!!
Love Emma
xxx

 

[Thom]

I guess most are partial to the doctors that have, in essence, saved their lives. Giving an opinion is not difficult. That said, I hope that mine are as unbiased as possible. Selecting a surgeon is a personal one. It must be extra difficult for parents. One has to be convinved that they are competent, and they also treat patients with compassion. I think Duke Cameron at Johns Hopkins is one of those special doctors. I happen to know he has an acute interest in pediatric surgey. Johns Hopkins is a great hospital, too.

Here are a couple of links:

http://www.hopkinschildrens.org/pages/feature/index.cfm

http://www.hopkinsmedicine.org/CardiacSurgery/Faculty/cameron.html

I'm also fairly certain he will respond to questions e-mailed to him.

Good Luck to your friend, and her child.

 

[gijanet]

Emma...........

Emma...........

Have Bev e-mail me (at my comcast account - not yahoo - I rarely check that one.) if she wants a shoulder. Nothing at all against any of the other surgeons, but unless they are at one of the bigger pediatric heart centers, they are not going to have operated on many kids with heterotaxy. People just don't understand our kids' anatomies........heart in backwards and on the right, single ventricular function.......even if they do have both as Katie does, interrupted inferior vena cava, bilateral superior vena cava, stomach on the right, etc. By no means, is it "routine." No matter how good they are, experience in this arena (heterotaxy) is the difference between life and death. THAT alone is why we travel 1500 miles for surgeries. One of the surgeons recommended in someone else's reply operated on a friend's son and chose not to address his leaking common AV valve; he is now going to have to have another OHS again in the not too distant future to address this issue. (PM me if you want more info on this.) If you still need CHOP, Boston, STanford, UofM, let me know. All my love to you and Bev, J.

 

[Lynlw]

here are the links
CHOP /spray
http://www.chop.edu/consumer/pat_care_fam_serv/staff_profile_page.jsp?sid=71975&id=20443

Boston/ delnido http://children.photobooks.com/dire...ze=5&service=7712&shellid=247&pict_id=9900940

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

and here is the link to TCHIN that has links to alot of the chd centers. If I can do anything else to help you, please just ask, Lyn www.caringbridge.org/nj/justinw

 

[PapaHappyStar]

To throw in another name: Jan Quaegebeur at the NYP did my Ross and is affiliated with the children's hospital of New York. He's pretty good ( which is why I chose him... ), his office will get back to you, he dosent seem to respond to his e-mail much though ( didnt to mine ) -- he is also extremely busy ( one reason is: he is in NYC ).

Columbia/NYP pediatric surgery site:
http://cpmcnet.columbia.edu/dept/surgery/Cardio/PedCTSurg/PedCardSurg.htm

Some links about him:
http://www.newyorkmetro.com/nymetro/health/features/n_9493/
http://www.nydailynews.com/news/local/story/275442p-235875c.html

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

 

[tantekay]

Just looking over all the recommendations -- I think all are great choices. We had to choose between Duke University (In Raleigh - someone has already listed) and University of Virginia -- many have different opinions of UVA and I totally respect that. We personally had a wonderful experience and are awaiting our Fontan - due sometime over the summer next year. With such a critical decision I think she should check out every hospital you can get to reply to you. Don't know if UVA could help but it wouldn't hurt to ask. You can find them on the web just to look at the center and find out some info about them. They are working on their Children's Heart Center and are very helpful. Best of Luck - you all are in my thoughts and prayers.

 

[JeanneImp]

Hi Emma!

Did Ed Bove ever get back to your friend???

 

[Emma]

Hi Jeanne!!! I didnt realise you'd joined too?!! Welcome! Spoken to Dan lately??

We did hear back from Bove, just yesterday - he said from the looks of Lucy's cath report and notes she seems to be well palliated at the moment and has no need for intervention just yet. He also agrees that at the moment her ventricular function isnt good enough to support the fontan. But he said he would think, that given time, the cocktail of many different drugs that shes on will strengthen the left ventricle and make fontan a possibility which he would do when the time comes. So very positive reply!

We are still waiting to hear back from all the other surgeons we emailed.

Thankyou for asking though - was going to update on this thread tonight funnily enough.

Good to see you here though Jeanne - not spoken for ages!!

Love to you
Emma
xxx

 

[JeanneImp]

(((((Emma)))))

I actually have belonged to this wonderful group for years. I let my membership get away from me for a while. When I joined, I think I was the only Heart Mom!!! But the advice and support was excellent. I was so clueless and there wasn't anyone on our heart lists that knew what a Konna was or had a dble. valve replacement lurking.

Dan posted to one of the private lists just today... I miss him and worry about him and Jo. I loved seeing all the new pics of the family.

I am happy to see Ed Bove responded. As you know, he did Matt's last surgery and gave him life..... He is right up there, in best of the best.

Nice to see you too! Is your friend on the UK list?

 

[gijanet]

Emma.......

Emma.......

I am so glad that Dr. Bove replied. That would be so out of character for him if he didn't. I think that his reply sounds promising, but would certainly be anxious to hear the rest..............and I'm Bove biased.......still, with our complex kids, the more eyes on Lucy's cath results, the better. Give Bev my love. I can't find her e-mail addy (got is stashed somewhere..........sigh!), or I would do it myself.

Jeanne................now when did you sneak back on here? I've been on here for a year and a half and haven't seen you.......... and where were you hiding when I was looking for valve and coumadin info? I found this fabulous group for much the same reason you did, I guess, years ago...........just trying to find people with info and there doesn't appear to be too many kids out there with mechanical valves...........not that I have stumbled across anyway. So glad you heard from Dan. I do so miss his posts and his humor............and Bethy was so much like Katie, heterotaxy syndrome w/complete AVSD, etc., leaking AV valve, and all..................sigh! GIve him my love, will ya?

Many hugs. Janet

 

[JeanneImp]

Jeanne................now when did you sneak back on here? I've been on here for a year and a half and haven't seen you.......... and where were you hiding when I was looking for valve and coumadin info? I found this fabulous group for much the same reason you did, I guess, years ago...........just trying to find people with info and there doesn't appear to be too many kids out there with mechanical valves...........not that I have stumbled across anyway. So glad you heard from Dan. I do so miss his posts and his humor............and Bethy was so much like Katie, heterotaxy syndrome w/complete AVSD, etc., leaking AV valve, and all..................sigh! GIve him my love, will ya?

(((((Janet)))))

LOLOL Oh Janet!! Where is your memory?? I emailed back and forth with you a few times regarding Katie, Coumadin and mechanical valves! And I keep up with her Carepage! lol How is everything going? INR's? I hate Coumadin, if you remember! We battle INR's continually. 9 years later and it is still a struggle...... Some drs say it is normal while others say it is rare.

I will put out a post to Dan and send him your love. He must know how missed he is... by so many. But I also know how tough it is for him to read the lists. My heart is still broken for them....

 

[Lynlw]

honestly Janet, I have to agree w/ Jeanne I know she contacted you about it lol I only know because we were talking about katie, daily or hourlythru her hospital stay, well that and you know us "old Ladies" have to sticj together lol, Lyn

 

[gijanet]

Hey, no fair ganging up on me...........

Hey, no fair ganging up on me...........

LOLOL Oh Janet!! Where is your memory?? ..

It's gone. Shot! Kaput! See what five years of sleep deprivation will do to one. I could be the sleep deprivation poster hag! Now yolu know I wasn't kidding when I said I took to wearing my name tag the whole time we were at the hospital just so I would know my name.........sigh! Thanks for giving Dan my love (not that I'll remember, heehee!). And, yes, I think it would be very difficult, too, to read the posts. The wound is much too fresh. Many hugs. J.

 

[JeanneImp]

It's gone. Shot! Kaput! See what five years of sleep deprivation will do to one. I could be the sleep deprivation poster hag! Now yolu know I wasn't kidding when I said I took to wearing my name tag the whole time we were at the hospital just so I would know my name.........sigh! Thanks for giving Dan my love (not that I'll remember, heehee!). And, yes, I think it would be very difficult, too, to read the posts. The wound is much too fresh. Many hugs. J.

Oh yes I do know!! I am still wandering around and for your info, it does not get better! Just ask uhmm what's her name, oh yeah, Lyn!!!

I have another news break for you, you are going to England in March! hehehe It's listed on small talk... Emma is making all the plans... lol

Have a great day and huggs to Miss Katie.

 

[JeanneImp]

BTW! Stupid question... how did you put Katies pic up here? I would like to add Matt's.

 

[Mary]

BTW! Stupid question... how did you put Katies pic up here? I would like to add Matt's.

Jeanne,
You need to go to the user CP and look at the change avatar list. If you have a picture of Matt saved on your computer, you reduce it down to no more than a 100x100 pixel size and then it's ready to go.