valve replacement for four-year-old boy

[Belen]

Hi Belen
My son Wren is just 2 and just had OHS for his stenotic aortic valve. We sought second opinions and eventually chose to travel from Seattle to Stanford so Dr Hanley could be Wren's surgeon. In the end Dr Hanley chose not to replace the valve but to repair it. We shall wait and see how long it lasts. He suggested we try and wait till age 7 for a full valve replacement due to the difficulties of repeat kono's to enlarge the valve opening if an adult size valve is not possible. Of course, your son may be able to be fitted with a large enough valve already which would be great.

I was very impressed with Dr Hanley and the team there. They are hard to get into the surgery schedule and they ALWAYS run late (with frequent delays of surgery) so I think you are lucky to have a consult soon!

Wren was discharged 7 days after OHS - in November this year - and had no complications.

Please email me if you want to know more about the discussion between mechanical (with coumadin) vs bovine valve replacements. Its only really an issue if they think they can't fit a large enough valve to last into adulthood.

Shannon

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Hi Shannon,
I'm glad to hear everything went well with Wren's surgery and it's good to know that you liked Stanford, too.

Unfortunately, Gregorio cannot get a bigger valve yet, either. They are considering trying to enlarge the valve opening, but I'll have more details about the valve options they are considering on Tuesday. From my last talk with the cardiologist, I think they are thinking in a mechanical one. I'll let you know what they say next week, and I'll probably have more questions then.

Thanks a lot for writing,
Belen

 

[Andrew'sMom]

Belen,My son is 8 and has a bicuspid aortic valve that is mildly stenotic, but his bigger problems right now are dilation of the aortic root & ascending aorta. He has other heart defects, none of which have been repaired yet. We live in Pennsylvania and see docs in Pittsburgh, however I don't think we will have surgery in Pittsburgh when the time comes. Michigan and Boston are two places we will seek opinions from.
Can other members help me here... I can't remember her user name -- there is another Andrew on here who sounds like a very similar situation as Belen. Is it Cocoa Lab? Her Andrew is TGA, not sure if he had the arterial switch, but last year had a horrific battle with an infection while on a backwoods camping/hiking trip of some sort & had to have the valve replaced. I believe they are out in Belen's part of the country, but if I remember correctly, their surgeon was leaving to head up the ped. program at Cleveland Clinic.
Wishing you all the best, and I will keep you in my prayers.
Jen

 

[Mary]

Belen,My son is 8 and has a bicuspid aortic valve that is mildly stenotic, but his bigger problems right now are dilation of the aortic root & ascending aorta. He has other heart defects, none of which have been repaired yet. We live in Pennsylvania and see docs in Pittsburgh, however I don't think we will have surgery in Pittsburgh when the time comes. Michigan and Boston are two places we will seek opinions from.
Can other members help me here... I can't remember her user name -- there is another Andrew on here who sounds like a very similar situation as Belen. Is it Cocoa Lab? Her Andrew is TGA, not sure if he had the arterial switch, but last year had a horrific battle with an infection while on a backwoods camping/hiking trip of some sort & had to have the valve replaced. I believe they are out in Belen's part of the country, but if I remember correctly, their surgeon was leaving to head up the ped. program at Cleveland Clinic.
Wishing you all the best, and I will keep you in my prayers.
Jen

Cocoa lab is the mother of the son you mentioned, Jen. He's 15 and had a tricuspid replacement.
Belen, if you look cocoa lab up on the member's list, click on "about me", you will find out more information about his current status.

 

[gijanet]

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Hi Janet,
Do you have any advice regarding how to tell our current cardiologist that I want to ask for a second opinion at Stanford? Gregorio is having a catheterization test on Tuesday, and the cardiologist is discussing options with the surgeon at UCSF (Dr. Anthony Azaki), and I guess I feel guilty about it in a way, and I wouldn't want him to pay less attention to Gregorio's case because we are consulting other places... But I really need to do it, and ask him on Tuesday, so that he gives me a copy of the eco and the catheterization test results... If you have any advice on how to go about it, it would be great.

Thanks, and best, and merry Christmas,
Belen

Sorry so late with the reply, but we are in the process of moving, so I have not been able to be on the computer much at all. I'm glad to see some other moms have stepped in to take up my slack. I know how you feel. I was a bit gunshy at first about telling our cardiologist (whom we dearly loved but has since moved to S.Carolina) we wanted other opinions. He was affiliated witht the local children's hospital where Katie spent her first 8 weeks and where she had had her first heart surgery at the ripe old age of 2 weeks.

I first e-mailed the surgeons I wanted to seek opinions from and found out what they needed to do so. (I also made it clear that we were willing to travel for surgery in those e-mails.) I then approached our cardiologist. To my surprise, he was very supportive and fully endorsed our getting additional opinions. (I felt like he would be obligated to convince me we needed to stay there for Katie's future surgeries, but he put Katie's best interest ahead of that pressure.) The surgeons he recommended for those opinions pretty much paralleled mine - mainly the larger pediatric heart centers due to Katie's very complex anatomy. He did also mention Hanley. I remember that specifically, but we stayed pretty much with due north and the east coast surgeons. He then sent all the required info to the surgeons: cath films and report, latest PC checkup report, and latest echo tape and report, plus the surgical summary from her first surgery.

It took almost a month to get the additional opinons. I got antsy in a couple of cases and e-mailed the surgeons. They got back with me promptly and summed up basically their findings that they were mailing to my PC. We elected to fly up and meet with Dr. Bove. He was willing to do it telephonically but we wanted to meet with him face to face. WE were supposed to fly up Sept. 13th, 2001. Needless to say, we didn't get out as no planes were flying yet. We finally got up there Oct. 4th, met with Dr. Bove during his lunch (he stays booked, but said he would work us in whenever we could get up there............God, I love this man!) He patiently explained our options, answered my two pages of questions, and we were sold. We then had Katie's second heart surgery there in Michigan the next month. Katie couldn't fly due to her cyanotic defects, so we took the train. And then we repeated that two more times just for grins. The one advantage to traveling for surgery is that we never got bumped more than a day or two because they knew we had traveled so far; the locals got bumped instead when emergencies came in...........

Anyway, that is way more than you wanted, but I wish you luck and please keep us posted. When you feel shy about asking for those opinions, just remember that you are your child's advocate and he is what matters the most. Your PC can get over a few ruffled feathers if there are any.

Many hugs. Janet

 

[Lynlw]

Belen,My son is 8 and has a bicuspid aortic valve that is mildly stenotic, but his bigger problems right now are dilation of the aortic root & ascending aorta. He has other heart defects, none of which have been repaired yet. We live in Pennsylvania and see docs in Pittsburgh, however I don't think we will have surgery in Pittsburgh when the time comes. Michigan and Boston are two places we will seek opinions from.
Can other members help me here... I can't remember her user name -- there is another Andrew on here who sounds like a very similar situation as Belen. Is it Cocoa Lab? Her Andrew is TGA, not sure if he had the arterial switch, but last year had a horrific battle with an infection while on a backwoods camping/hiking trip of some sort & had to have the valve replaced. I believe they are out in Belen's part of the country, but if I remember correctly, their surgeon was leaving to head up the ped. program at Cleveland Clinic.
Wishing you all the best, and I will keep you in my prayers.
Jen

Andrew has L-TGA (congenitaly corrected) not D-TGA (which is what most people think of when they hear TGA, the pulm art and Aorta are switched).

Jen you also might want to look at CHOP (philly)the surgeon is Dr.Spray, he is very good and great about 2nd opinions. and CHOP is usually rated#1 or 2 for ped heart centers.

 

[Andrew'sMom]

Lyn,
Thanks for setting that straight! I actually have CHOP on the list of places to seek 2nd opinions, I read thru this thread real fast when I first posted, and for some reason I thought you had already posted CHOP as an excellent resource.