Vicky Delgado
Member
My 8 year old daughter has severe MR and doctors are anticipating surgery. Any advice will be extremely appreciated.
dick0236;n884006 said:Hi Vicky. There are a few on this forum that have experienced surgery as a young child and hopefully they will see your post. I would also suggest another forum dedicated to children with heart issues. Do a search for "Mended Little Hearts". You will find a lot of info that will be helpful.
Jimmyk;n884007 said:Vicki,
Wishing you’re daughter the best!
I’m 53 now, and have had aortic valve replacement 1 year ago,due to severe stenosis.
At the time of surgery, I knew nothing about choice of valve and had very little time to do research.
Do your homework, the doctors told me that there is no wrong choice.
I can tell you that, I chose mechanical. From the little bit I read, mechanical will last a lifetime, but it’s a mandatory lifelong regimen of blood thinners.
Another thing is that I’m sitting in the hospital right now writing this message. It’s my 3rd stay since AVR , due to complications from the blood thinners.
I can still remember sitting in my room last year, the surgeon came in and asked me for my decision on a biological or mechanical.
Even though there was no influence allowed in the decision, my wife and I swore that the surgeon was leaning towards biological.
He told me that a biological valve, might have to be replaced in 10 years, but technology will be so much more advanced.
That replacement of a biological valve, will be a minimally invasive surgery.
When I read, I would only have to take a pill a day. It sounded simple.
If I had to do it again, I would not want to be anywhere near blood thinners again.
Please, I’m just sharing my experience.
God Bless, you and your daughter.
Agian;n884008 said:Vicky, as a dad, I understand your anxiety. Just remember, we do OK after these operations.
Superman;n884009 said:For consideration, at 8 years old, if it is a valve replacement (the post isn't clear), it's not likely to be her last. She will outgrow whatever valve is chosen. When she is at or closer to adult height, she will be able to make an informed decision about what is hopefully a more permanent solution. If she can get 10 years out of a tissue valve with no anti-coagulation - I suspect that'd be the way to go. But certainly listen to your medical team over some anonymous poster on a message board. I don't know the particulars at all.
My first open heart was when I was 17. For the most part, done growing so a little different than your daughter. I know it was talked about that young for me, but we took a restricted activity approach to put it off as long as possible. While it's hard to see your child go through a surgery, I can offer my perspective that it's one of regret. I can't do anything about it, but in hindsight, I wish my parents had okayed earlier intervention. Instead, I sat on the sidelines. No gym class. No athletic extra-curricular activities. Etc. Sometimes twice a year testing, monitoring, stress tests, heart cath's, etc All so I could get a mechanical valve and only face one open heart.
Admiral goal, and I understand their perspective. Nobody wants to see their child go through that. In the end, it didn't matter because I had an aortic aneurysm when I was 36 and still needed a second open heart.
Would have been fun to be on the basketball team, or run track or cross country.
honeybunny;n884018 said:(((((((((((((Vicky)))))))))))))) Sorry to hear you are dealing with this health issue. As Agian posted, we parents understand the concerns and worries you are going through. Sending positive thoughts your way. And yes, this is routine surgery nowadays and we all survived. Also, remember this is fixable, not a death sentence. Please keep us posted.
Hugs,
Michele
pellicle;n884023 said:Vicky
I had my first surgery at 10 ... not too different to your daughter. I'm now 54.
My good mate just had his daughter in for an OHS and she's out now and playing "hospital" with her cousin (who are really the best of friends as its a close family)
Kids are resilient, be careful to not fill them with your fears. Her parents (unlike mine) knew me well and knew my history, so they were perhaps much more confident than others. But they're also both highly pragmatic and rational thinkers too (much like me).
Best Wishes and let us know how it goes![]()
Vicky Delgado;n884051 said:Hello, Superman. Thank you for sharing your story with me. I can see your point and we will also consider it seriously for our decision. I am sure your parents made a heartfelt decision for your good. It is so difficult for parents to go through this kind of situation: no one knows the future and we can only do our best within our human possibilities. I appreciate your willingness to open your heart to help us in our decision!
Vicky Delgado;n884053 said:You are so right, Pellicle. it is very easy for us to transmit our fears to our daughter,
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