Confusing outcome from mitral valve repair

[ToniLou]

My 9 year old son underwent open heart surgery in March for mitral valve repair for servere regurgitation. They are still trying to find out what caused it, all they know is he’s had some sort of infection/inflammation of the valves some point. Can’t say how long ago but the valve leaflets were like scar tissue, which the surgeon hadn’t seen before 😞

The surgeon stated everything went well after his surgery and my son would get back to normality within 6 months. Saying he had not done it too tight so he’s got room to grow and he wouldn’t need intervention until adulthood.

At every check up we are told that the repair was done too tight and is now causing stenosis as not enough blood is getting through, even though his regurgitation has gone from servere to mild/moderate. This doesn’t make sense!

I’m hoping that his heart is just taking a bit longer to remodel itself. If things don’t improve much then we are looking at surgery again in the next couple of years 😢

His heart rate has improved dramatically and is within normal range and clinically hes doing really well. All his bloods are now normal, he had a 24 hour ECG which came back normal too 🤔

He has off days but they are few in comparison to before. I just don’t understand how everything is “normal”

I just want my son to be able to do the things he wants to fo as as far as he’s concerned he’s fixed. He wants to play out with his friends, go swimming, play football, do PE at school etc etc.

We are just so scared of him overdoing it.

My son has been on frusomide, enalapril and phenoxymethylpenicillin since last September plus asprin since surgery. Thankfully no warfarin.

Can anyone give any guidance on how long it takes to recover. He had his op on the 13th March 2022.

Reassurance needed as I’m starting to think it would have been better to have the valve repair if we are looking at surgery again so soon 🥺🥺

[Hidden]

Hello & Welcome

I read your post and all I can say is what a wonderful Son you have to go through all this but he must have a wonderful Mum that has helped him

I can totally understand you want him to be doing all the things a 9 year old does and I can only wish because I do not have the answers to your questions that in time this will happen

I hope as members see your post as there are so many that are so full of knowledge on here that they will be able to give you the answers to your questions

Look after yourself x

[Milkfairy Heart Star]

Hello ToniLou,

I am sorry you are feeling so confused at the moment. The worry must be exhausting for you all.

Have you been in contact with any of the charities and support groups for children with heart conditions?

It might help if you can be in contact with other parents with a child having gone through surgery.

chfed.org.uk/

heartline.org.uk/

Perhaps give the BHF helpline a call and speak to one of the Cardiac nurses for more informaion and support.

bhf.org.uk/informationsuppo...

[Snowdrops_17]

I looked up Rheumatic Fever and it can affect children between 5 - 15 years old! Google it or NHS website and it will give you a broader understanding hopefully! 👍

[ToniLou in reply to Snowdrops_17]

I’m not confused about the rheumatic fever as we have been told by the surgeon that that’s not the cause. They are still trying to get to the bottom of what has caused it 🥺🥺

[Larneybuds in reply to ToniLou]

Hi....first of all I am so glad your brave boy has had his surgery. As a very much older person who suffers the same condition and who knows how scary it all is, I really do pass on my best wishes. With regard to possible causes of your son's regurgitation, I was told that infection can cause valve problems and also gum disease but I wouldn't think your son is old enough to have the latter. I would keep asking questions about the apparent problem since surgery....you are a worried parent who wants the absolute best for their son and his recovery and you have a right to know if problems continue what is causing it. Does your son have a cardiac nurse you could speak to? ...they are usually fantastic. If not...as someone else suggested....BHF nurses are on hand....give them a call . Hopefully any problems might just be small hiccups on the road to him being much better . By the way....i was also told that repair to a valve is a much better long term option than replacement so hopefully future surgery won't be required. Take care and I hope your son continues with an excellent outcome after recovery x

[ToniLou in reply to Larneybuds]

I think that’s what we cant understand. He has always had regular dentist check ups and his oral health has always been amazing.They said it’s definitely down to some sort of infection at some point but he’s always been a well/healthy little boy until more recently.

He started getting swelling of the feet and ankles which we took him to a&e for on three occasions and just got sent away with no further testing. It would last a few days then disappear for months then return.

I’m convinced this was related and any issues weren’t picked up on at all which is extremely frustrating.

[Larneybuds in reply to ToniLou]

My consultant said strep infections can be the cause after say a cold or sore throat. I mentioned gum decay or hygiene but I think really that would be the case with perhaps older people. I am sure you would like to know the root cause of the problem but sometimes that remains out of reach...even for the experts. It must be so frustrating for you and just adds to the upset and anguish. Let's keep fingers crossed with you that the repair will settle and life can become more normal which I am sure it will. I know how frightening this all is for you as I have severe mitral regurgitation and still waiting for my op . Your son is a star and as said in my earlier message, I hope he continues with his improvement and can lead a normal and fulfilled life. All the best to you all. Take care xx

[Anon2023]

Hi. I am so sorry to hear what you and your son have gone through. As an adult who has had two mitral valve replacements I can only imagine how brave your little boy has needed to be. It must be so frustrating and scary not to know why he had regurgitation and I would be pressing for answers. Perhaps contact PALS (Google them) and see if they can help. I’m terms of recovery I would say, as an adult, it takes a good 6 months before you start to feel anywhere near normal after open heart surgery. We are all individual and some will bounce back quicker or take longer. They reckon 3 months for your rib cage to heal for an adult but then you need to build up your fitness levels again. Your son may be very resilient although he may have days when he is exhausted. As a parent myself I completely understand that you want to protect him but spending time playing with his friends and doing normal activities will probably hasten his recovery. Please don’t take this the wrong way but I would speak to the cardiologist and ask them if there are any limitations, if not then I think you’ve got to let him get back to doing the things he loves.

[22alfie]

This is hard for all of you and your family I'd loved to tell how long before he can do all the other things kids his age should be doing but I think there are no set rules and everyone is different . keep in touch with his rehab nurse and maybe she/he can set up some classes for him you can join in on the class to. And keep talking about it 😘