Wednesday 1 May 2013

15. Quality of life of patients with birth defects of the heart

     As a doctor looking after patients and families with birth defects of the heart I often get asked ' Will my child have a normal life after the heart defect is treated?' In years gone by when cardiac surgery and key hole therapies were in their early stages of development the results were less than satisfactory and there was a significant risk of death or brain damage attached to treating heart defects. Now with advances in medical technology, increased skill and innovation this risk for most surgeries and key hole treatments is less than 5%. Of course, this risk will vary depending on the how complex the defect is. Overall however it has been reduced significantly over the years.
    
This improvement can be attributed to several factors

1. Advances in cardiopulmonary bypass - during the majority of complex heart surgery the heart needs to be stopped temporarily and during this time the blood is pumped around the body using a machine called the heart lung machine, this technique is called cardio pulmonary bypass
2. Improved post operative care - this has probably been the single most important reason for improved outcomes. Although the surgeon or cardiologist may be the visible face of a successful unit it is the intensive care specialists that really make a difference to the outcome of patients
3. Development of less invasive techniques for treating heart defects - for example many simple and moderately complex defects of the heart can now be treated using key hole techniques avoiding the need for surgery. Also surgical techniques have now been refined where surgeons are able to carry out many operations without stopping the heart

As a result of these advances the majority of patients with heart defects survive even complex operations. Following treatment these children will need regular follow up with the paediatric cardiologist as they grow into adult life. Simple lesions like holes in the heart have an excellent long term outcome and these children grow to be normal adults and can expect a normal life expectancy with a normal quality of life. If they have a good result they can even participate in competitive level sport. With more complex heart defects long term survival remains good with the majority living into their 30s and 40s. As cardiac surgery for complex birth defects has evolved only over the last 30-40 years we do not know what will happen to these patients when they are say in their 50s or 60s. Overall these children have a relatively normal life, going to school, participating in play activities, pursuing careers etc. The majority of women who have had a good result with treatment tolerate pregnancy well although they need closer monitoring and care during pregnancy than the normal population.

In summary the majority of children who are born with heart defects can have a normal life and a fairly good life expectancy. They do need timely treatment and ongoing care to give them the best chance of survival and help them achieve their potential.