Five CHD Questions: What?

What is the long term outlook for a child born with a  Congenital Heart Defect (CHD)?

It varies. A child born with a simple Artrial Septal Defect (ASD) or Ventricular Septal Defect (VSD) may have the defect close spontaneously as they grow. Although their lifespan may well be normal these children should be monitored by a Cardiologist at least once a year and the majority of their lifetime medical needs can be satisfied by the general medical community.

At the other end of the spectrum, there is no long-term data available for children who have Hypoplastic Left Heart Syndrome ( HLHS). The Norwood Procedure – the three surgery repair for HLHS –  was developed in the late 1970’s and early 1980’s, and Infant Heart Transplantation only became available in the mid-1980’s. The oldest HLHS survivors are in their twenties and thirties, and there is no good data yet on how these hearts are going to react to a lifetime of wear and tear.

Many recent developments could conceivably extend the lifetime of a patient with a weak heart. The Left Ventricular Assist Device (LVAD) is a small pump that is surgically implanted in the body and helps the heart to function. Most draw power from an outside source and require the owner to carry a small bag at all times, but at least one new model has no outside connections at all. It uses magnets to provide the energy needed to keep the heart pumping.

LVADs are mainly used as a “bridge to transplant” to keep a heart going until a suitable donor heart can be found, but there are other options being explored that do not involve a heart transplant – and may not even involve surgery.

One of the most promising is the insertion of replacement heart valves by Catheter. Medtronic’s valve replacement system recently entered clinical trails in the United States. Using Stem Cells to repair the heart are also an option that is being explored.

I think the future is bright for CHD survivors – a future which not only involves fewer surgical procedures but gives us an increase in quality of life and in length of life.

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