Baby with bad valve

[ChinaBaby]

I am so glad that I have found this forum. My newly adopted baby girl has a "moderate" regurgitation of her mitral valve. She was put on an ace inhibitor by the cardio. She has a very slight enlargement of her heart (very small) and a normal eeg. All I know is that it is just wait and see - he says she is too small for any kind of repair. My pediatrician says that repair is definitely in her future.

So many questions, where to start. Does anybody know the size/age of a child where repair becomes possible? Rhuematic fever was mentioned as a possible cause - but from what I have read, it shows up later in life - not so young.

Anybody with children who have had valve repair/replacement? I would love to hear from you.

Thanks for listening.

 

[Ross]

Hello and welcome to the forum.

Sorry to hear of the troubles. It's hard when it's a little one dealing with these problems. We have a couple of people who have small children that have gone through these things, but I don't think we have any your childs age.

May I offer up a suggestion of checking into Dr. Mee at the Cleveland Clinic? He specializes in Cardiac surgery in pediatrics.

http://www.clevelandclinic.org/staff/getstaff.asp?StaffId=455

I'm sure others will be along to sound off too, so hang it there and again welcome.

 

[Bryan B]

I'm not sure where you are located, but the surgeon who did my Ross Procedure is the Chief of Pediatric Cardiac Surgery at Duke University Medical Center (ranked 3rd best heart hospital is USA). He specializes in all pediatric surgery as well as congenital heart disease in children and adults. He is not only a fantastic surgeon, but has a wonderful bedside manner. Whenever I go to see him it's at the Duke Children's Clinic, and I always enjoy seeing the children playing in the waiting room while I'm sitting there all nervous. It helps put things in perspective for me every time.

 

[atydev]

So sweet

So sweet

Mia is such a sweet and beautiful looking little girl. I could hug and kiss her all day.... I have a son that have a mild mitral valve regurg. I had him tested when I found out my condition was inherited. So we just found out and he is 13 not 13 months. His cardio dr. said he will be fine as long as we keep him premedicated before inavasive procedures and dental work. It may get worse and require a replacement or repair it is a wait and see thing. I was told no caffine for him but other than that let him be a boy. If he stays without symptoms then he is not to limit himself. I do wish you well and hope little Mia does well. Keep her checked and find a good cardio that you trust. Best wishes.

 

[gijanet]

Welcome to the group!

Welcome to the group!

Hi, Terry! I am fairly new here myself, but you will find that the people here are wonderful and very supportive. Mia is adorable and congratulations on the adoption.

This is only my two cents, but I would get a second opinion from another pediatric cardiologist, preferably one affiliated with a large institution. You will find that opinions can vary greatly from one institution to another.

There could be legitimate reasons for postponing Mia's surgery, but not simply "that she is too small for repair." I would have to ask then what kind of repair they have in mind. Are they afraid that it might have to be replaced? If so, then that would be a legitimate reason to wait until she is bigger, but not at the expense of her heart becoming enlarged. I assume they are monitoring her closely to watch for that. Or could they be considering a procedure where they replace the mitral valve with her pulmonary valve - I think it's the ross? Maybe not. Dunno, that one is out of my ballpark as it was not an option for us. If so, then the bigger Mia gets, the better..........again, not at the expense of her heart deteriorating. If the regurgitation can be adequately controlled through use of an ACE inhibitor, then that would be another reason to "wait and see."

My daughter Katie "rode" with a leaking valve for three years. It was mild, then moderate, then finally classified as severe last November. A repair was attempted last April. Sadly, one month post-op we found out that the repair was not holding up, and we are back to a moderate leak again. We have gone for monthly echoes since then to monitor her heart function. Her surgeon would like to be able to wait until her one year anniversary from her last OHS before he goes in again - this time most likely for a replacement. He would like to give her a year's recovery time, but not at the expense of her ventricles weakening. Thus, the close monitoring.

Your PC may be right on track, but I would certainly ask more questions, and, it never, ever hurts to get a second opinion. Fortunately, too, second (and third and fourth, etc.) opinions do not cost anything if you obtain them from any of the large pediatric heart centers. We have sought out numerous opinions from CHOP, Boston Children's, Texas Children's, and the University of Michigan. The only institution that ever charged us was our local children's hospital - go figure!

Anyway, hope this helps and please e-mail me if you have any more questions that I might be able to help you with. I belong to a couple of pediatric heart support groups, but I have not found many parents in there with kids who have had their valves replaced. Let me know, though, if you would be interested in those.

Good luck and keep us posted.

 

[ChinaBaby]

Thank you all for the warm welcome. And thank you for the excellent suggestion for second, third or more opinions!!!!

I should know better than to just run with the one opinion (almost killed myself that way - long story for another day<g>).

I will contact the cleveland clinic and Duke this week. We live closer to Duke. What do any of you know about Emory, closer to home in Atlanta?

Mia was evaluated by a physician of the Sibley heart center, but I did not get the warm fuzzies and I could tell he was not up for my barrage of questions. Yes I am one of those patients that can be pretty insistent on getting answers.<g>. In his favor, his credentials are very good indeed.

I hope to know more about her situation after her second appointment this month.

You are all so very brave!!!

 

[Harpoon]

Gonna echo thoughts on having a second opinion for your daughter's condition if, for no other reason, than because I KNOW no child is "too small" for heart surgery.


Dr. Mee and his staff at Cleveland Clinic perform surgery on infants n o more than 24 hours old at times. Generally the conditions they may have are pretty severe and require immediate attention, but not always.

The running theory (at least with the top heart docs in the world) is that the earlier you can perform surgery successfully the better the outcome is for the patient. The more time a child spends with a "good" heart that functions well enough to survive long term with the better and infants tend to be really quick healers. There are other issues associated with that such as failure to thrive problems that a child may experience with a heart condition. That's easier to avoid if the heart is "fixed" quickly.

I had something called transposition of the great vessels, the aorta and pulminary artery were connected in the wrong places, when I was born. I had surgery a few weeks after I was born, in 1973. I had been heart healthy for about 28 years when my tricuspid valve started to fail. It's a "side-effect" of the procedure used to fix the transposition which puts more stress on the tricuspid valve than is normal. I was in VERY good shape before the valve tanked, very active. I'm STILL doing quite well after recovering from the valve replacement in March, 2003 and much of that is thanks to Dr. Mee in Cleveland.


Ask around. US News and World Report maintains a list of the top ranked heart hospitals in the US and any of the top three are good for heart surgery. Be VERY selective with where you go.

There's also a really good book, Walk on Water by Michael Ruhlman, that's about children with congenital heart defects and how they're treated. He followed Dr. Mee and his staff for several months at Cleveland Clinic and while the book is mostly about them, it's got a lot of general information about pediatric heart surgery AND some good insights and considerations parents should have when it comes to getting treatment for their children.

Plus, a few of the doctors on Mee's team are now in other hospitals, such as Dr. Drummand-Webb, and they're close to (Mee IS the best these days in the world) the same calibre as Mee for peds heart surgery.

 

[Bryan B]

Terry,

If you are considering Duke as one of your choices, I would highly recommend getting in contact with Dr. James Jaggers. He is the Cheif of Pediatric Cardiac Surgery at Duke and did my VSD repair and Ross Procedure. In addition to being an exceptional pediatric and congenital heart surgeon specializing in peds and adults with congenital heart problems, he has a wonderful bedside manner. If you would like to PM me concerning my experiences with Dr. Jaggers or obtain his contact info feel free to do so.

As for age/size, I remember my mom saying that they wanted to wait for me to reach 30lbs before considering OHS unless it was emergent. By the time I reached that size I was doing well enough that they decided to wait and continue to follow me closely. I had 3 caths by the time I reached 18, but because I was relatively asmyptomatic they decided not to do surgery after each cath. I made it to 43 before endocarditis made the decision for everyone.

Good luck with your search!

 

[Emma]

my daughter has a mitral replacement

my daughter has a mitral replacement

Hiya,
My daughter was born with CAVSD and ended up, after numerous surgeries, with severe mitral regurgitation ending with a mitral valve replacement and warfarin for life.
I have not once regretted consenting to her having the replacement cos her quality of life improved 1000 times after it! Before the replacement, as her regurg. got worse and worse, she was tired, grumpy, unable to walk far etc etc.
Then amazingly, after the MVR and just a couple of days out of PICU, she was giggling while she walked round the ward following the doctors and we haven't looked back since!
I think the valve replacements are amazing. Yes, they do come with their own set of problems - warfarin side effects and the ticking of a mechanical valve - but to me, it was worht it cos Chloe now leads a very 'normal' life. I try my very best not to wrap her in cotton wool. I let her go to parties, play with friends and run around as any other child would, obviously being careful with bumps and things, but no-one, having not seen her scars has ever guessed she has a CHD. She is bubbly, LOUD, very bright and so so cute... she's my little miracle!

I would guess (and it is only a guess!) that their reason for not doing surgery yet would be that they would like her to be a little bigger to get the biggest possible valve in if replacement is essential. The bigger the valve they get in, the further in the future any necessary repeat replacements will be.
Just one word of warning though, if you see your daughter deterioate at all (swollen anywhere on her body, breathless, more tired than usual), get her checked immediately as i'm sure you would do. I only say this as Chloe was left on the surgery list for so long, that in the end her replacement was done as an emergency as she went into almost fatal heart failure. This is NOT a normal occurance so please don't worry. That extent of heart failure takes a long time to happen, Chloe was unfortunate that it kept getting dismissed by the doctors, but it all turned out ok in the end and she's doing so well now.

Please feel free to ask me if you have any specific questions about the condiont or the op and I'll do my best to help you.

Sorry to waffle on for so long!

Emma
xxx

 

[Emma]

too small???

too small???

Hi again Terry,
Sorry, i just read just original mail through properly and read about the surgeon saying shes too small for surgery on the valve yet.
I can't understand that, as Chloe's first repair on her valve was when she was just 6 weeks old and weighed only 4 kgs. Her second lot of surgeries and the valve replacement was at 18 months of age but she still only weighed around 9kgs then.

I would agree with everyone else here and say get a second opinion to put your mind at rest.

Emma
xxx