Alison........big ((((hugs)))) going to you!
Alison........big ((((hugs)))) going to you!
Welcome to the group. I know how terrified you are as I have walked in your shoes. (That is how I stumbled upon this wonderful group of folks.) My daughter Katie has had five heart surgeries, including the EC fontan and a mechanical valve replacement at the age of four. Her common AV valve (mitral and tricuspid merged as one common valve, but generally considered to be her mitral for anticoagulation, etc., purposes). She is now seven years old, in second grade and doing great. She is a bundle of energy, although she does stay somewhat bruised from the coumadin, but she is very rambunctious and quite the little tomboy.
The internet is a wonderful thing, but please do not read everything that you believe, especially concerning statistics. Most are dated and do not reflect the technological advances that have been made in the last ten years. You know, I am sure, that repeated surgeries on our kids are riskier because of the scar tissue buildup in addition to their smaller, fragile systems, but most
are surviving.
I am concerned about where your daughter is being treated, though, if that institution is where you were told that the death rate for valve replacement in children under six is very high. I would encourage you to seek out additional opinions from some of the larger pediatric heart centers. (I know the University of Alabama has a pretty good ped heart program, and it is a teaching hospital so it should accept most insurance companies.)
Although Katie had her first heart surgery here at home when she was two weeks old, we began seeking out additional opinions (with the endorsement and support of our cardiologist) after the cath doctor there told us when she was two months old that we would be lucky if Katie lived to be five years old as most children with her condition (heterotaxy with complex chd) died before the age of five. We continue our followup at our local children's hospital, but we have had our last four heart surgeries at the University of Michigan's CS Mott's children's hospital. WE actually sought out five opinions before deciding on UofM and Dr. Bove. The beautiful part of it is that it didn't cost us anything. None of the larger heart centers (also teaching hospitals) charged us for that additional opinion. None of them. THe only one that charged us was our local children's hospital. Go figure!
Anyway, we just got a copy of her latest cath report and films as well as a copy of her latest echo and report and shipped them off. I did e-mail all of the surgeons whose opinions I was seeking in advance to see what would be needed and to confirm the cost as I didn't know if my insurance would cover multiple additional opinions. They told me what they needed (as mentioned above) and confirmed that their would be no cost. Your present hospital, though, may charge you for the copies of the echo and cath and the reports. Because my PC got copies for us, we did not have to pay anything but you might want to check on that. I know money can be an issue (believe me, I know), but most of the teaching hospitals do accept most insurance companies. The first time we went out of state for surgery, I did have to have our PC write them a letter stating why Katie needed to go out of network to have her surgery performed. By the next surgery, my school district had switched insurance companies to a PPO plan, and it wasn't an issue any longer.
Please seek out another opinion. I am reallly concerned about the current plan of waiting until your daughter crashes.
Dr. Bove stressed to me that, while we could wait a little while for Katie's valve replacement, we
did not want to undergo surgery in a crisis situation and nobody could predict when that could occur, but it would occur. And the odds of survival do go way down in a crisis situation. Also, Katie was four and Dr. Bove was able to place a small adult size valve in her so we, hopefully and God willing, will not have to have her valve replaced for a very long time, maybe never. (We are planning on Katie being in the Guinness Book for having the oldest mechanical valve on record!
) Having said that, we know deep in our hearts that Katie is most likely not through with heart surgeries as she has so much extracurricular wiring within her in addition to the valve, and she could very well need a pacemaker or defibrillator some day, but we do hope and pray that that day is a long, long, long way off.
I would also have them check that cadaver valve out, too. I would hate to have your daughter get her mitral valve replaced and then turn around a year or two later and need the homograft valve replaced.
Well, I have rattled on long enough for one night. I hope this makes sense. I have a horrible head cold and my head is in a fog. Please feel free to vent and ask questions. We will be here for you. Many hugs. Janet
