Surgery or not?

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Surgery or not?

Postby Redheadange » Thu Jul 21, 2016 1:07 pm

Hello everyone. I wonder if anybody can help or advise me.

My son is 21 years old - he has Down's Syndrome and severe learning and communication difficulties. He has no capacity so we need to speak and make decisions for him. He was born with ASVD and a leaky valve. When he was 2 years old, he was treated with chemotherapy for leukemia and we always knew that this could affect his heart function later in life. His current status if that the valve is now leaking a lot more and he has moderately impaired LV systolic function.. He is currently well and shows no symptoms but we are now being asked to consider surgery to repair the valve. If we do not do so, he will become gradually worse although the timescale is not known - could be a year, could be 10. However, if we decide to go ahead with surgery to repair the valve, the ventricular function may not recover completely. Worst case scenario is that he may not survive. If we decide to go ahead with surgery, they want to do it in the next 2/3 months; if it is deferred, then an opportunity to correct the valve in future would be unlikely. We are in a catch 22 situation. We do not want to watch our son become ill and weaker but we do not know if we can make a decision which could cause us to lose him.

Has anybody had a similar experience? Is there any advice anybody can offer - I would be most grateful
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Joined: Thu Jul 21, 2016 12:52 pm

Re: Surgery or not?

Postby Tricky Dicky » Thu Jul 28, 2016 9:23 am

Hi Redhead Ange,

Really feel sorry for you in this terrible situation, I haven't experienced anything similar so can't help in that way.

Have you discussed it with the GUCH nurses?

You're more likely to get replies if you post on the somerville facebook page or you could try the American ACHA forum

I've just ordered a book called The Naked Surgeon: The Power and Peril of Transparency in Medicine which looks at how to assess the risks of heart surgery, it might be worth having alook at (I won't get my paperback version until October but the softback version is out now and your library may be able to get a copy for you).

Are you anywhere near Leicester? The Somerville conference might be worth going to, there's a talk on 'How to avoid surgery'.

Wishing you all the best,

Tricky Dicky
Posts: 122
Joined: Wed Aug 16, 2006 1:32 pm
Location: Camberley

Re: Surgery or not?

Postby judith » Thu Aug 04, 2016 10:22 am


I'm sorry to hear the decisions that you are having to make on behalf of your son.

I was born with AVSD, narrow pulmonary artery and a leaking mitral valve in 1960.

In 1968 I was the first to have an AVSD correction at GOSH which resulted, according to the surgeon, Mr Waterston "with an excellent result". Life became much easier for me after that op and then once I was fully grown in 1976 I had my mitral valve replaced. I am now 55 and my valve has been replaced a further two times but this is less likely nowadays for repeated replacements. I did begin to go into heart failure about 14 years ago but this did not totally restrict me. Early this year I had a biventriclar pacemaker which has greatly improved my energy levels.

I hope that this information helps you and whatever decision you make I am sure it will be the best for your son. All the best.

L Judith Parker
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Joined: Tue Apr 25, 2006 4:15 pm

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