8 year old daughter, likely surgery coming up

[Vicky Delgado]

My 8 year old daughter has severe MR and doctors are anticipating surgery. Any advice will be extremely appreciated.

 

[dick0236]

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]

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]

Vicky, as a dad, I understand your anxiety. Just remember, we do OK after these operations.

 

[Superman]

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]

(((((((((((((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]

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]

A big thank you to each of you for taking of your valuable time to write and help. It is very encouraging, especially in the midst of this new battle. I am feeling quite anxious and I am going all over doing research and homework to be in the know before the big news hit, to be able to make a better decision when the time comes. I apologize: it would have been the right thing, but I missed it, to specify from the beginning that my daughter, Lucy, has visible needs (a.k.a. special needs), so she has been through many kinds of situations since her first day of life, most of the times one or more issues at the same time, and many times the issues will be there for her lifetime. So thank you all, very much, for enlightening me. I am beginning to see clearer. This forum is excellent, and I am happy to have found it and joined it. You are a warm and responsive group. God bless you all!

 

[Vicky Delgado]

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.

Thank you very much, dick0236! I followed your advice right away and joined the community you mentioned! Let's see how that goes.

 

[Vicky Delgado]

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.

Hello, JimmyK. Thank you so very much for sharing your experience. It is extremely valuable for me to be able to see your perspective. I will absolutely take it into account very seriously for the decision we need to make for our daughter. God bless you abundantly. I hope you will be granted good health and a good way to resolve all your heart situation.
P.S. I just said a prayer for you!

 

[Vicky Delgado]

Vicky, as a dad, I understand your anxiety. Just remember, we do OK after these operations.

Thanks for your encouragement, Agian! Not easy, but I have to learn to take it easy.

 

[Vicky Delgado]

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.

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]

(((((((((((((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

Thanks, Michele! Thanks for the reminder she'll be ok. It's just that an open heart surgery at that age is kind of scary, not because she won't make it but because of all the post-operatory situations that will arise. Thanks fro your encouraging message!

 

[Vicky Delgado]

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

You are so right, Pellicle. it is very easy for us to transmit our fears to our daughter, and I regret to say we have already done that many times. We will definitely work at being much more careful. Thank you very much for opening our eyes to this important issue!

 

[Superman]

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!

Happy to help. I reread my post and it reads a little more “down” than I intended in tone. We’re talking about growing up in the 70’s and 80’s. There were certainly no resources like this available. As far as I knew, I was the only one in the world facing my particular situation. I certainly don’t intend to question the good intentions of my parents.

 

[pellicle]

You are so right, Pellicle. it is very easy for us to transmit our fears to our daughter,

before you go hard on yourself its probably early days and it takes a long time to cement these fears. I'd say there is a good chance to turn it around. FWIW this is a post I wrote about my own mum some years back here:
http://www.valvereplacement.org/for...-so-upset-my-baby-has-bav?p=786328#post786328

I know its hard being a mum ... just from observation that is ... so don't go being too hard on yourself for perceived mistakes

I'm sure it'll all go "like routine" and she'll be bouncing around soon. Indeed my friend Shaun has commented to me that his daughter has increased activity levels after surgery, he could see in comparison how she was held back before the surgery and now needs to find extra energy himself to keep up.

Win Win


Best Wishes

 

[dornole]

It sounds like you have a lot of experience in handling your daughter's needs. In my experience parents of children with special needs are often the most capable people you could ever meet in working through decisions (though, I wish you didn't have to be . . . . ) You'll be able to figure this out and advocate for and support your wonderful daughter. It's good to talk through your questions and fears. The superhero outfit gets threadbare sometimes and we're all only human.