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Angelene asked...

Congenital heart defect

My son has down's syndrome and a congenital heart defect. When he was 2 he had leukemia and was treated with anthracycline which has further compromised his heart function. His left ventricle function appears to be decreasing in the context of sever regurgitation of the left AV valve. We are being offered the option of repairing the valve but this could mean that the left ventricular function may not recover following repair of the valve. Worst case scenario is that he may not survive. If we do nothing, he will get worse though we do not know when - could be a year, could be ten. If surgery was deferred, then an opportunity ot correct the valve in the future would be unlikely. We need best advice please - where should we go for a second opinion?

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The answer

The prospect of correcting a heart defect with surgery can be an overwhelming experience for parents and children. Parents may experience the emotions of guilt, of fear and the emotional anguish about making the right decision for a recommended treatment that is offered to their child. A second medical opinion can always be sought at another Congenital Heart Disease Centre. This second opinion can be arranged by your general practitioner or your child’s present cardiologist or surgeon.

There are a number of specialist Congenital Heart Disease Centres for heart surgery across the country for children and the provision of this service is being updated within the National Health Service to achieve clinical excellence. Parents can gain a lot of information about procedures for heart defects via the Children’s Heart Federation website.

This advocacy organisation for parents also has a helpline, which can offer a great deal of support for worried parents at this time.

We would strongly recommend that you discuss these very understandable worries and concerns with your present cardiologist or surgeon.

Answered by the Health at Hand nurses  

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