Cardiology
60% of children born with EvC have a congenital heart defect. The most common cardiac defect in kids with EvC is an atrial septal defect (ASD), sometimes so large that there is only one collecting chamber in the heart rather than a left and a right. This will often not bother your child until they reach a year or two old, but they may struggle sooner than this if their chest and lungs are particularly small because heart and lung function are interdependent (if one doesn’t work well then neither does the other). There is a good description and an animated diagram of the anatomy here:
http://www.nemours.org/e-service/kidshealth.html?p4if_ps=102
ASD’s are usually completely fixable and you’ll never have to worry about your kid’s heart ever again once they’ve recovered. They can go on to lead a normal, active life.
The prospect of your child needing open heart surgery is terrifying; there is no adequate way to describe how it makes you feel as a parent. The chances of your child getting through surgery and making a full recovery are very high these days as techniques improve, but there are no guarantees. My baby was extremely ill with heart failure before he had his operation, but even so they reckoned his chances of making it through the operation were nearly 90%. If your child is in good health before having planned surgery, and is older than the 6 weeks my boy was, then they will probably have a better chance than this. Don’t worry, Angus made it through and so did we.
Some children have an atrioventricular septal defect (AVSD) which is either partial (there is a little bit of a wall separating the left from the right side of the heart) or complete. In a complete AVSD the heart is just one big chamber where the oxygenated blood from the lungs mixes with the deoxygenated blood from the body. You would think that if your baby has this they would need surgery straight away, but the amazing little bubs are usually fine up until around 3-6 months. There is a good description and a diagram of the anatomy here:
http://www.mombaby.org/index.php?c=1&s=25&p=95
AVSD’s can affect the structure of the heart valves to the extent that they cannot be fully fixed. If this is the case then your child may need a mechanical valve replacement at some point in the future. The reason a mechanical valve is used in children is that a pig valve wears out too quickly and there can be rejection problems. The downside with mechanical valves is a) they don’t grow with your child so need to be replaced every few years until they stop growing, and b) they increase the risk of clots forming near the valve so warfarin (coumadin) must be taken for the rest of your child’s life.
There can be other problems with the heart anatomy and different operations required. Every child is an individual so pay more heed to your cardiologist than to the information here, please.
So far the parents in the support group have reported the following cardiac defects:
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ASD
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AVSD - partial and complete
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left atrial isomerism
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left hypoplastic heart syndrome
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One pair of pulmonary veins joining into the other pair before entering the heart
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Pulmonary vein "flap"