valve replacement for four-year-old boy

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Lynlw said:
There are a few Good CHD centers in Cal (Standford, Loma Linda, ect ) Hewre is a link from one of the very best sites for CHD http://tchin.org/cardiology/index.htm#CS02
Check out the site there is alot of info as well as childrens stories ect Lyn
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Thanks!! I'm finding the linik very useful. I think I'm going to start by cheking out some books on how to prepare ourselves for the surgery.

Belen
 
Your welcome, they have a couple really good email lists that quite a few parents belong to. A couple of my friends has a support group in Ca for CHD families (darn they probably just had their Holiday party, I think it's in Nov) They know alot about the hospitals and which centers are better for whioch CHDs/procedures. http://caheartconnection.homestead.com/Index.html
 
support group

support group

Hi Belen,
So glad you contacted this group and wish you the best finding the right Dr. for your son. I just wanted to let you know there is a support group for kids with heart issues, it's Mended Little Hearts. The Mended Hearts program, a support group of the American Heart Assoc., has been around for a long, long time, and not long ago started a separate chapter program for kids. I don't know if there is one in your area, but try and Google Mended Little Hearts and see if you can find some help out there. I know there is an active chapter, here is Tucson, AZ. All our best for your little boy,
Sue
Oro Valley, AZ
 
I just had my valve replaced by Duke Cameron at Johns Hopkins in Baltimore Maryland. Dr. Cameron is the head of pediatric cardiac surgery at Hopkins. His specialty is valve replacement and transplants. The only reason I mention him is he has a very good bedside manner. He really cares about his patients big and small. He pays attention to all the small details for your care. He will take extra time to explain everything in PLAIN ENGLISH. For a stupid auto mechanic that really helps. Rumor has it that he will travel to do surgery. The most important question is would you trust him with your child. Being a father I can say I would. If you would like his offices phone number message me. If he can't do the surgery he could refer you to someone in your area that he trusts.
 
Belen,
I am an adult CHD'er. I had surgery at Stanford 4 years ago to have my pulmonary valve replaced. My surgeon was Dr. Frank Hanley. Dr. Hanley is one of the top CHD surgeons in the country. I don't think you would go wrong with a consultation at LPCH.

Let me know if I can answer any questions!

~Diane
 
I can't help you with doctors and places that you might go. I can offer you assurances that they can work on 4 year olds.
How do I know that? Well 49+ years ago at the age of 4 I underwent surgery to work on my aortic valve. At the time there was no such thing as a replacement, but they did fix me well enough I lasted 47 years till my valve needed to be replaced.
 
Just wanted to say hi and welcome, my son as had 2 mitral valve repairs and will be having a valve replacement in the future. I can't help with your questions but wanted to wish you all the very best, sending hugs.
 
Welcome, Belen!

Welcome, Belen!

Although I am sorry that you have a need to be here. This is a wonderful group, and I am glad that you found us. My daughter Katie has had five surgeries and had to have her common Atrioventricular valve (mitral and tricuspid merged) replaced when she was four. She is now 8 years old, in second grade, and doing really well. She had a prosthetic valve implanted so she is on coumadin. Although I truly wish with all my heart that she was not on ACT therapy, it is not nearly as bad as I dreaded and feared, and Katie has thrived despite the fact that she is quite the tomboy. Forget visions of a dainty little girl sitting around having teaparties and playing dolls. That would sooooooo not describe Katie. She is out on the playground, or rolling around the yard with the dog, or riding her scooter or jeep. While we have had our share of bumps and bruises and cuts, and they scared me to death at first, I learned when to be concerned and when not.........and kids do manage to thrive on coumadin.

I wholly endorse your wanting to get a second or third opinion. We actually sought out five before choosing Dr. Bove. Due to your location, I second Dr. Hanley. Had we not fallen in love with Dr. Bove, we would have considered a consult with Dr. Hanley. (He was on our list.) He comes highly recommended and is definitely one of the best pediatric cardiothoracic surgeons in the US. If you need help on how to seek an additional opinion, give me a shout. I just started out by e-mailing the surgeons I wanted to get opinions from. They all e-mailed me back quite promptly; one even called. Blew me away. :eek: (I know one thing that all ped surgeons share is compassion.) Oh, and there is one mom on here whose kiddo just had surgery performed by Dr. Hanley. check out http://www.valvereplacement.com/forums/showthread.php?t=28483

They are probably just getting home from there. She PMed me a couple of days ago and has a post in post-surgery referenced above. Look for other posts by scrappergirl.

If you are interested in a California ped heart group, check out www.caheartconnection.org

An online heart mom friend is fairly active in that group and there is a lot of support there.

Well, please keep us posted. I know what you are going through. We are here and we will be praying for little Gregorio. Hugs. Janet
 
I am so sorry that you have to go through this with such a young child. My son ended up being handled by adult docs, but I have heard very good things about Stanford and Loma Linda. My son did go to Loma Linda for a consultation but that was after both of his surgeries. Please stick around here and keep us posted. The people here can offer you support and understanding that almost no one else can. This site saved my sanity during my son's last surgery.
 
geckley said:
I just had my valve replaced by Duke Cameron at Johns Hopkins in Baltimore Maryland. Dr. Cameron is the head of pediatric cardiac surgery at Hopkins. His specialty is valve replacement and transplants. The only reason I mention him is he has a very good bedside manner. He really cares about his patients big and small. He pays attention to all the small details for your care. He will take extra time to explain everything in PLAIN ENGLISH. For a stupid auto mechanic that really helps. Rumor has it that he will travel to do surgery. The most important question is would you trust him with your child. Being a father I can say I would. If you would like his offices phone number message me. If he can't do the surgery he could refer you to someone in your area that he trusts.
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Thanks a lot. I'm rigth now trying to learn the things I need to ask. We will need a surgeon that specializes in children, but I'll write to you again if I still can't make too much sense of what's going on. Although we trust that his present doctor is very good, sometimes I feel it would help to have somebody who can take more time to explain things to me, and that's why we are looking for other options.
Best wishes for this holiday (it's already here, I can't believe it),
Belen
 
Diane said:
Belen,
I am an adult CHD'er. I had surgery at Stanford 4 years ago to have my pulmonary valve replaced. My surgeon was Dr. Frank Hanley. Dr. Hanley is one of the top CHD surgeons in the country. I don't think you would go wrong with a consultation at LPCH.

Let me know if I can answer any questions!

~Diane
Click to expand...


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Hi Diane,
I think we'll be lucky enough to get a consultation with a pediatric cardiologist at Stanford next week (it's a busy time of the year and it was not easy). It's good to know you are happy with Dr. Hanley, because I think that would be our surgeon too if we decide to go with them,
Thanks a lot for your message and merry Christmas,
Belen
 
gijanet said:
Although I am sorry that you have a need to be here. This is a wonderful group, and I am glad that you found us. My daughter Katie has had five surgeries and had to have her common Atrioventricular valve (mitral and tricuspid merged) replaced when she was four. She is now 8 years old, in second grade, and doing really well. She had a prosthetic valve implanted so she is on coumadin. Although I truly wish with all my heart that she was not on ACT therapy, it is not nearly as bad as I dreaded and feared, and Katie has thrived despite the fact that she is quite the tomboy. Forget visions of a dainty little girl sitting around having teaparties and playing dolls. That would sooooooo not describe Katie. She is out on the playground, or rolling around the yard with the dog, or riding her scooter or jeep. While we have had our share of bumps and bruises and cuts, and they scared me to death at first, I learned when to be concerned and when not.........and kids do manage to thrive on coumadin.

I wholly endorse your wanting to get a second or third opinion. We actually sought out five before choosing Dr. Bove. Due to your location, I second Dr. Hanley. Had we not fallen in love with Dr. Bove, we would have considered a consult with Dr. Hanley. (He was on our list.) He comes highly recommended and is definitely one of the best pediatric cardiothoracic surgeons in the US. If you need help on how to seek an additional opinion, give me a shout. I just started out by e-mailing the surgeons I wanted to get opinions from. They all e-mailed me back quite promptly; one even called. Blew me away. :eek: (I know one thing that all ped surgeons share is compassion.) Oh, and there is one mom on here whose kiddo just had surgery performed by Dr. Hanley. check out http://www.valvereplacement.com/forums/showthread.php?t=28483

They are probably just getting home from there. She PMed me a couple of days ago and has a post in post-surgery referenced above. Look for other posts by scrappergirl.

If you are interested in a California ped heart group, check out www.caheartconnection.org

An online heart mom friend is fairly active in that group and there is a lot of support there.

Well, please keep us posted. I know what you are going through. We are here and we will be praying for little Gregorio. Hugs. Janet
Click to expand...

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Hi Janet,
Thanks a lot for writing. I'm glad to hear that Katie is doing well. Yes, I'm scared to death about anticoagulants (and about the things I don't even know yet), and it helps to hear from another mom. It helps a lot to hear good things about Dr. Hanley, too. I've had such a hard time trying to get appointments, that I hadn't even imagine that doctors would return my e-mails. I'm going to try that, too!

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
 
Thank you DeWayne, and Paula, and Deanne, too!! We are starting to talk to Gregorio about procedures and the hospital and it certainly helps to know about all the people who have gone through similar things.

This forum is a wonderful place, and I wish you all merry Christmas,

Belen
 
Like Janet I am the Queen Mom of getting second opinions. Your son's pc should not have a problem with it because many/most people do it, especially for kids with complex CHDs because certain surgeons have more experience and better results than others. (even IF a CHD surgeon is a wiz at 1 type of CHD surgery it doesn't mean they are the best at others, so be sure to ask how many surgeries they have done on kids with your son exact origonal CHDs). The first thing you need to do is contact the doctors you want a 2nd opinion from and ask what exactly they need. They probably want copies of the CD from the cath lab, echos, ect so they can look at them themselves. Then you just tell your pcs office you want all the records sent to , whoever it is. You probably will have to fill out all kinds of HIPPA forms to get release the info to other docs. Your pc s office might tell you to contact the Medical records dept to get the records sent.
it is pretty easy and most pediatric heart centers will give a 2nd opinion from records for no charge. IF you are sending out records, Boston, CHOP (Philly, Spray)) and Uof M (Bove)are good places to get opinions. (I usually don't tell them I probably will not travel there) Their contact info is in one of the TCHIN links I gave earlier.
I definately would talk to Hanley,too Especially since you don't want to travel far.He is good.
BTW I have found many of the very best surgeons don't have alot of bedside Manner, but that is fine you usually don't see them much.
 
Belen said:
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Hi Diane,
I think we'll be lucky enough to get a consultation with a pediatric cardiologist at Stanford next week (it's a busy time of the year and it was not easy). It's good to know you are happy with Dr. Hanley, because I think that would be our surgeon too if we decide to go with them,
Thanks a lot for your message and merry Christmas,
Belen
Click to expand...

Belen,
Do you know which cardiologist you are going to see at Stanford? I see Dr. Dan Murphy for my cardiologist at Stanford. Dr. Murphy sees both pediatric and adult CHD pts. I think he is an awesome doc with a good sense of humor as well as a good bedside manner. I don't know anything about the other peds cards at Stanford as I have only seen Dr. Murphy.

When I went for my consultation appt with Dr. Hanley, I had to wait quite a while because he got stuck on an international teleconference. I was getting nervous that I wouldn't have enough time to talk to him and get all my questions thoroughly answered because I was also scheduled for a CT scan that morning. After a little while, Dr. Hanley's secretary/receptionist came and told me that she had called CT and had them reschedule my appt for the afternoon. Then when Dr. Hanley finished his teleconference and she led me into his office, she told me that I did not need to feel rushed and that he was mine for as long as it took for me to feel satisfied that all my questions were answered. He spent over an hour with me and never seemed to be rushing me. He explained the procedure that he would do and why they thought I should have it done. He also explained the pros and cons of that procedure and some other alternatives that I was thinking about.

Dr. Hanley also goes one day a week to Children's Hospital Central California in Madera (near Fresno) to do some of the more complex surgeries that they have. I happen to live in Madera so they sent me to his associate at Children's for a post-op visit instead of having me drive back up to Stanford. His associate told me that I was lucky because "the Maestro" of heart surgeries had operated on me. I sometimes go to the Mended Little Hearts meetings in Fresno and the parents here all think Dr. Hanley is wonderful too.

Good Luck with your appts and Merry Christmas!

~Diane
 
Recent valve surgery with Dr Hanley

Recent valve surgery with Dr Hanley

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
 
Lynlw said:
Like Janet I am the Queen Mom of getting second opinions. Your son's pc should not have a problem with it because many/most people do it, especially for kids with complex CHDs because certain surgeons have more experience and better results than others. (even IF a CHD surgeon is a wiz at 1 type of CHD surgery it doesn't mean they are the best at others, so be sure to ask how many surgeries they have done on kids with your son exact origonal CHDs). The first thing you need to do is contact the doctors you want a 2nd opinion from and ask what exactly they need. They probably want copies of the CD from the cath lab, echos, ect so they can look at them themselves. Then you just tell your pcs office you want all the records sent to , whoever it is. You probably will have to fill out all kinds of HIPPA forms to get release the info to other docs. Your pc s office might tell you to contact the Medical records dept to get the records sent.
it is pretty easy and most pediatric heart centers will give a 2nd opinion from records for no charge. IF you are sending out records, Boston, CHOP (Philly, Spray)) and Uof M (Bove)are good places to get opinions. (I usually don't tell them I probably will not travel there) Their contact info is in one of the TCHIN links I gave earlier.
I definately would talk to Hanley,too Especially since you don't want to travel far.He is good.
BTW I have found many of the very best surgeons don't have alot of bedside Manner, but that is fine you usually don't see them much.
Click to expand...

--
Thanks Lyn!! I'll do this, and I'll follow your advice and send out records to other places, too. I've seen Dr. Bove's name several times in this forum, and I did find his contact info in the link you sent me before, so I'll see if I can get his opinion, too.
Belen
 
Diane said:
Belen,
Do you know which cardiologist you are going to see at Stanford? I see Dr. Dan Murphy for my cardiologist at Stanford. Dr. Murphy sees both pediatric and adult CHD pts. I think he is an awesome doc with a good sense of humor as well as a good bedside manner. I don't know anything about the other peds cards at Stanford as I have only seen Dr. Murphy.

When I went for my consultation appt with Dr. Hanley, I had to wait quite a while because he got stuck on an international teleconference. I was getting nervous that I wouldn't have enough time to talk to him and get all my questions thoroughly answered because I was also scheduled for a CT scan that morning. After a little while, Dr. Hanley's secretary/receptionist came and told me that she had called CT and had them reschedule my appt for the afternoon. Then when Dr. Hanley finished his teleconference and she led me into his office, she told me that I did not need to feel rushed and that he was mine for as long as it took for me to feel satisfied that all my questions were answered. He spent over an hour with me and never seemed to be rushing me. He explained the procedure that he would do and why they thought I should have it done. He also explained the pros and cons of that procedure and some other alternatives that I was thinking about.

Dr. Hanley also goes one day a week to Children's Hospital Central California in Madera (near Fresno) to do some of the more complex surgeries that they have. I happen to live in Madera so they sent me to his associate at Children's for a post-op visit instead of having me drive back up to Stanford. His associate told me that I was lucky because "the Maestro" of heart surgeries had operated on me. I sometimes go to the Mended Little Hearts meetings in Fresno and the parents here all think Dr. Hanley is wonderful too.

Good Luck with your appts and Merry Christmas!

~Diane
Click to expand...

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Hi Diane,
The person who recommended Stanford gave me the names of Dr. Murphy and Dr. Bernstein, and we were able to get an appointment sooner with Bernstein so we are going to see him. I still don't know how soon Gregorio will need the valve replacement (we are hoping we can wait until spring), and we are hoping that they can schedule Gregorio's surgery, but we don't know yet. I'll keep you posted.
Thanks a lot,
Belen
 
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