My son has a condition called Saethre-Chotzen Syndrome as well as craniosynostosis he had a Cranio vault surgery at 9 months old to repair sutures. Recently he was suppose to have a left ptosis eye repair surgery but he wasn't cleared due to an abnormal EKG saying something about a possible left ventricular hypertrophy. Of course I have no idea what this is. Still waiting on the referral to go through in the mean time I'm freaking out. He's been failure to thrive due to lack of weight gain he also has asthma and acid reflux. He is 4 years old is this a serious thing? He's already been through a lot what should I expect with this LVH?
You are actually asking two questions here: the first one has to do with the congenital cardiac defects associated with Saethre-Chotzen Syndrome and the second has to do with the interpretation of the ECG. Congenital heart defects are associated with Saethre-Chotzen Syndrome, although the medical literature is not blatantly clear as to which defects they are. I did see one article that listed tetralogy of Fallot, which is a complex cardiac defect that you would know by know if your son had, since he's four. Therefore, I am going to presume that your child likely does not have a serious or complex congenital cardiac defect, and may not have any cardiac defect at this point.
With regard to the left ventricular hypertrophy (thickening of the left ventricle, or LVH) in the ECG, ECGs are very good for heart rhythm, but only okay at estimating chamber size. And, they do a much better job with the right side of the heart versus the left side. In fact, ECGs often overcall LVH. Therefore, it's only a screening test. Depending on your son's history, examination, and specific ECG findings, it may be determined that he needs no further evaluation OR that he may require an echocardiogram, which is a much more helpful and diagnostic test for LVH. Of note, one of the reasons that we see LVH is a cardiomyopathy, which is a genetic abnormality of the of the heart muscle. However, Saethre-Chotzen Syndrome is not associated with cardiomyopathies.
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