Mitral Valve Repair/Replacement

[Chelseabun76]

My 1 year old son has what the cardiologists are calling a 'severely abnormal mitral valve'. I am finding it very hard finding information on it because it really hasn't been diagnosed as any one thing. It does look like a parachute mitral valve, they showed me the echo and it looked just like a jellyfish to me. I also took a quick glance at a paper from his results and also saw mitral stenosis in the notes. Whenever I try to look up information on congenital heart defects, mitral valves are left out of the list, why is that? They are unsure of whether it can be repaired, I think we might have to go for a 3D echo to show the surgeon more.

If anyone has any good information regarding mitral valve defects, it would be greatly appreciated. We are hoping to hear from the surgeons this week about when we are starting our road to recovery with his first surgery on his COA.

 

[Greg a]

Is he at Toronto's Sick Childrens or Ottawas ....BE DIRECT with the doctors ...ask straight questions and expect/demand straight answers....YOU HAVE TO BE YOUR SONS STRONGEST ADVOCATE he depends on you and you as a mother have those rights

 

[Chelseabun76]

We will be going to the Stollery Children's Hospital in Edmonton (12 hours away) for his surgeries. As well, we may be heading there beforehand for further testing with a 3D echocardiogram as they don't have the machine required for him in Winnipeg. I think they want better views of the valve, because the cardiologist in Winnipeg that did the heart cath. has only seen a case like his on paper, never in real life up until this point. They are discussing his case today (or he is supposed to be on the list for today) between Winnipeg and Edmonton, so I am hoping we hear by the end of the week what our next step is.

 

[Greg a]

I have PM'd Lynn with the link to this post

 

[catwoman]

Chelsea:

My cousin's son was born with mitral valve prolapse -- which would look like a "parachute," as you described your son's valve. Josh is now about 24 and has not yet required cardiac surgery.
He was born with other defects (only 1 kidney, which is polycystic; visual/hearing deficits; bilateral cleft palate & harelip; attention deficit disorder; etc.). He has had numerous surgeries for the cleft palate, harelip and orthodontic problems due to the cleft palate.
Perhaps the 3D echo will show that your son's valve is not as bad as cardiologists suspect at this time. Ask about having additional tests -- at the very least a more specialized echo, the TEE, a heart cath or scans. With a toddler, I'm not sure what is the norm for tests, but I'm sure they'll want to do more.
Good luck, and I hope you can buy some time and not have to go through surgery at this time.

 

[Chelseabun76]

Thanks, Marsha! We had a heart cath done on the 27th of April and it showed the harm that his defects are doing to his heart. His heart is pretty enlarged for a baby, and we saw the dvd when it was done and could see first hand just how much of his blood was being pushed back into the right side of the heart and the pressure it is under because of the valve not working properly, as well as his COA. We have had the regular echo done, but I know the 3D echo will show a lot more. He already has some congestive heart failure and is on lasix which is helping a lot...

 

[UnderDog]

The type of valve abnormality you are describing sounds like a "Barlow's" mitral valve to me (often described as billowing with excess tissue). The website for the Mitral Valve Repair Center at Mount Sinai hospital in NYC is an excellent resource on congenital mitral valve defects and repair techniques. The address is www.mitralvalverepair.org. You can find a discussion of "Barlow's" mitral valves on that site at http://www.mitralvalverepair.org/content/view/131/. I was born with a "Barlow's" mitral valve and had it successfully repaired at Mt. Sinai at age 29 last year. Barlow's mitral valves can be trickier for less experienced surgeons to deal with- I consulted with multiple surgeons before choosing Dr. Adams at Mount Sinai because of his expertise in repairing Barlow's valves (other surgeons thought they only had a 75% chance of a successful repair while Dr. Adams was confident he had nearly a 100% chance of success). I wish you and your son the best.

 

[Lynlw]

Hi, Chelsea, I'm sorry to hear your son will be needing surgery soon, I also know how frustrating it can be when you can't find alot of info. My son had his first surgeries when he was 10 days and 18 months old, he's 23 now, so that was before the internet so it was very hard to find out anything and of course there were no support groups.
Justin doesn't have the same CHDs so I can't answer Mitral questions, but I can recomend a very good CHD group www.tchin.org They have some online email groups and the main one pdheart is pretty active, hopefully someone there can help you out http://tchin.org/support/index.htm

As for info on different CHD and surgeries, one of the best books I know for parents is It's my Heart from the childrens heart foundation, i checked quickly and there is a little about mitral valves. The are out of hardback books right now, but you can read a pdf online http://www.childrensheartfoundation.org/publications/its-my-heart/english hopefully this will take you to the chapter list

 

[Chelseabun76]

Well, we are off for surgery, leaving tomorrow.... and my little Brayden is booked in for Monday morning, the 27th. As of right now, the plan is that it will be up to the surgeon as to whether or not he opens the heart after he repairs his COA to look at the mitral valve to see if it can be repaired or if it needs to be replaced. (They can't do the incision under the armpit, it has to be done on the chest, which is why he might take a look at it while he is already doing that incision) It is officially a parachute mitral valve, with mitral stenosis... I was finally able to read through his whole chart last week. They don't have high hopes that a repair can be made, but the surgeon will be doing everything he can to do a repair as opposed to a replacement. He has a 3D echo on Friday morning, so hopefully we will have a better idea on what route he is going to take, otherwise we will find out mid-surgery. Just wanted to update!!!!

 

[escargome]

Sending your family HUGE HUGS. I shall keep you all in my prayers on Monday. God Bless your little man and your family.

 

[Lynlw]

Chelsea posted an update yesterday about Brayden's surgery Monday on a CHD group we belong to and gave me permission to forward her updates here.

Brayden's surgery went amazingly well. It took around 3.5 hours... Dr. Rebeyka did a fantastic job with him. His aorta was repaired completely without using anything artificial, just sectioned and stitched back end to end and looks beautiful they said. His mitral valve, took some work but he managed to do a repair that is the best thing he could have done. He said it is by no means a perfect fix, but it's as good as he could get it without having to replace it. His valve now has a moderate regurg. as opposed to the stenosis he did have, but according to him, that is the price we have to pay for having it repaired. So I am sure they will be keeping an eye on the regurg to see how it will affect him. Otherwise things are great. He keeps fighting sedation, I knew they'd have problems because he is such a strong, healthy kid otherwise, a real spitfire! LOL!!! We took last night while he was in PICU to come back and get a good nights
sleep.... and are headed back shortly! We'll see if they have extubated him yet or not...

Chelsea

 

[Julian]

Chelsea posted an update yesterday about Brayden's surgery Monday on a CHD group we belong to and gave me permission to forward her updates here.

Brayden's surgery went amazingly well. It took around 3.5 hours... Dr. Rebeyka did a fantastic job with him. His aorta was repaired completely without using anything artificial, just sectioned and stitched back end to end and looks beautiful they said. His mitral valve, took some work but he managed to do a repair that is the best thing he could have done. He said it is by no means a perfect fix, but it's as good as he could get it without having to replace it. His valve now has a moderate regurg. as opposed to the stenosis he did have, but according to him, that is the price we have to pay for having it repaired. So I am sure they will be keeping an eye on the regurg to see how it will affect him. Otherwise things are great. He keeps fighting sedation, I knew they'd have problems because he is such a strong, healthy kid otherwise, a real spitfire! LOL!!! We took last night while he was in PICU to come back and get a good nights
sleep.... and are headed back shortly! We'll see if they have extubated him yet or not...

Chelsea

I love updates like this! GO BABY GO! Every little thing is going to be alright.

 

[nngbwh]

GREAT NEWS !!!!!!!!!!!!!!!!!!!!!!!! We are all happy the surgery went well. Thanks for the update, Lyn

 

[Jeff Edmonton]

That is excellent news, hopefully Brayden's recovery is going well and he is feeling better.

 

[Chelseabun76]

Finally got back on here again! Thanks for updating for me, Lyn! We are back home, we arrived back in town on the 6th of July. Brayden spent 5 nights in the hospital after his surgery, and his recovery has been amazing. I honestly couldn't prepare myself for how quickly he would bounc back. In the last 2 weeks since we have been home, he has gone from just learning to take his first steps, to running across the livingroom as fast as he can (which really isn't THAT fast but wow... still fast for him right now!), his blood pressures are stabilized and his lungs sound clear. His breathing is 100 times better, no more grunting and wheezing... I can't believe what a difference we noticed right from when he woke up and started playing in his crib. His incision healed beautifully, the scar is already fading. He has developed some bad seperation anxiety, as well as being VERY sensitive to loud voices or cries.... but we were warned about that and we're just trying to give him as much love and kisses as we can to make him feel safe and secure.

We head down to the city for an echo and a full 6 week post-op checkup on August 19th, and hopefully we won't see a change in the amount of regurg... I don't think they can repair the valve any further than they were able to, so if it does get worse one day, we are looking at a replacement for sure.

For now, we are so very happy with how things went. The doctors and especially the nurses at the Stollery in Edmonton were AWESOME. Can't say enough about them... and we owe his surgeon a world of gratitude.

 

[Julian]

Wow great news! Thanks for update.

 

[Chris M]

What great news! I'm so pleased to hear that your little boy is doing so well. Being so young I'm sure he will forget what he's been through quite soon too.

I wish him a continued and stellar recovery!

 

[Greg a]

Finally got back on here again! Thanks for updating for me, Lyn! We are back home, we arrived back in town on the 6th of July. Brayden spent 5 nights in the hospital after his surgery, and his recovery has been amazing. I honestly couldn't prepare myself for how quickly he would bounc back. In the last 2 weeks since we have been home, he has gone from just learning to take his first steps, to running across the livingroom as fast as he can (which really isn't THAT fast but wow... still fast for him right now!), his blood pressures are stabilized and his lungs sound clear. His breathing is 100 times better, no more grunting and wheezing... I can't believe what a difference we noticed right from when he woke up and started playing in his crib. His incision healed beautifully, the scar is already fading. He has developed some bad seperation anxiety, as well as being VERY sensitive to loud voices or cries.... but we were warned about that and we're just trying to give him as much love and kisses as we can to make him feel safe and secure.

We head down to the city for an echo and a full 6 week post-op checkup on August 19th, and hopefully we won't see a change in the amount of regurg... I don't think they can repair the valve any further than they were able to, so if it does get worse one day, we are looking at a replacement for sure.

For now, we are so very happy with how things went. The doctors and especially the nurses at the Stollery in Edmonton were AWESOME. Can't say enough about them... and we owe his surgeon a world of gratitude.

You just can not keep a good Canuck down ........so happy for you and praying for continued good health for Brayden and your whole family

 

[djteako]

I love this story for 2 main reasons .
1. it had anexcellent and very happy outcome
2. Dr. Rebeyca will be doing my upcoming surgery !!!

Chelsea , be even more rest assured that Dr. Rebeyca also specializes in Adult congenital patients , so as long as he's still working , he'll be able to follow Brayden !!!!!
I know I very excited to be having him do my surgery .