Mitral valve replacement in a nine year old child

[kevanndo]

My nine year old daughter is going to have mitral valve replacement surgery this summer. She has had two previous OHS--one at three weeks of age for a Complete AV Canal Defect and one at six years of age to repair a severely leaking mitral valve. After the mitral valve repair she developed severe hemolytic anemia which necessitated two hospitalizations and a series of blood transfusions on an outpatient basis to try to keep her hemoglobin levels up and prevent another surgery. For three years now she has been in what they hematologist calls a state of 'compensated hemolytic anemia.' Somehow her bone marrow has been able to keep up with the rapid destruction of red blood cells caused by her "repaired" valve. However, her most recent cardiology appointment revealed that her leak is now severe again and her pressures are not good. So we are faced with another impending surgery but must now make the decision about whether to go with a tissue or mechanical valve. Though hemolytic anemia is rare following mitral valve surgery, it is much more common with a mechanical valve. Since my daughter previously developed hemolysis after a mitral valve repair, I'm genuinely worried about what will happen if she develops it again after this upcoming surgery, especially if she is on blood thinners. The prospect of my daughter being on blood thinners the rest of her life really concerns me, and I have not come across much information about coumadin management in a child. So I have several questions:

1. Does anyone have experience with a child's mitral valve replacement surgery? If so, did you choose a tissue or mechanical valve, and what has your experience been?

2. Does anyone have experience with the On-X mechanical valve in a child?

3. Does anyone have experience with a young child being on coumadin? What kinds of special precautions do you have to take? Can your child still be a child, or do you find you have to make a lot of adjustments in their lifestyle?

Thanks,
Ann

 

[clay_from_nj]

I think that any replacement besides a Ross would require another surgery later on when she outgrows it.

 

[chaconne]

I have a nine year old daughter, so my heart goes out to you and your predicament. I think the main issue with anti-coagulants is getting a head injury, depending on how active or crazy the child is. This can be a risk since kids do hit their heads from time to time. My daughter tends to be more careful/cautious so it may not be as much of an issue for her. Either way there probably needs to be an adjustment in lifestyle.

I don't know that there are many children with On-X mechanical mitral valves at this point. Hopefully you can find someone on this site who can give you the info. However, it might be best to just decide based on how children do with any mechanical valve brand since it hasn't yet been definitively proven that the On-X is superior to other mechanical valves.

Blessings on your search

 

[dornole]

I am pasting this from one of lynlw's old posts in case it is useful to you, when she checks the forum she may be helpful to you as I believe her son had surgeries from an early age, not the exact same issue perhaps but she is very knowledgeable. Meanwhile here are a couple sites she recommended before for younger patient issues:

Have you checked out any of the forums for Adults w/ Cogenital Heart defects? IMO that would be a good place to find out about other people who had valves at a young age and some have had children. and what choices they made and why. http://www.achaheart.org/ a US site with members from all over or http://www.thesf.org.uk/ UK org

 

[fourxtrouble]

My son also had av canal. He had his mitral vavle replaced at 5. He had a st. Judes 21 ml valve put in. He has now out grown his valve and is about to face his 4 ohs. He is looking at a mitral and aortic valve replacement.

As for warfarin we have been very lucky. We do have many ups and downs with his levels that is to be expected. He recently had his first bleed however it didn't amount to much thankfully and the source was never discovered. As for the tissue valves his Dr won't even consider it because they tend to fail much earlier in children.

Hope this helps a little.

 

[kevanndo]

Thanks for responding. Can you describe what you mean by "he recently had his first bleed"? What exactly does that entail? I'm also concerned about how warfarin interacts with other medicines. In the past 1/2 year, my daughter has been on three different antibiotics and prednisone twice for a couple of illnesses. From what I've read, you have to be really careful about certain medications with warfarin. How have you handled that, or has it not been a problem?

You mentioned that your son outgrew his valve. Were there any other problems with it, or is he having it replaced solely because he outgrew it? My daughter is petite (51 lbs., 4 ft. 3), but the cardiologist seemed to suggest that we wouldn't have to have another surgery for a long time if she gets a mechanical valve.

 

[tom in MO]

Altough 57, I have had antibiotics (oral and injection) and prednisone treatments for about a month within the last year. My INR was stable, but it changed with the beginning of the treatments but not by much. I home test and they had me check about 3 days after the first big dose and then weekly and then biweekly as things settled down. There was no big change when the treatments stopped. Home testing is the easiest way to keep an INR in range if the situation is dynamic.

 

[kevanndo]

Thank you all for your advice and well wishes. Tom, your post made me feel a lot better.

 

[Marc]

Hi Ann,

if you have the possibility you may want to contact Prof.Haverich (http://www.mh-hannover.de/haverich.html). I know that he and his team have successfully implanted specially treated human valves in young children and that these valves are "at live" again, that means they grow with the children and there is no need for further ohs or special medication (http://www.vde.com/de/fg/DGBMT/Vera...ents/Forum-Bioimplantate/Vortrag Haverich.pdf). What I know is that this is not an option for adults, what I do not know if they have done it already with a mitral valve. I already had contact with him in a different matter but he was very kind and friendly. Maybe he can give you an advice in your special case!

Marc

 

[kevanndo]

Marc,

Thank you so much for this information. I have never heard anything about this, but it certainly sounds very promising.

Ann