Cause of death
Is there scientific evidence to suggest that people with CdLS who are on the more severe range are more likely to die earlier than those on the milder side? And does a limb difference(s) correlate with a shortened lifespan?
There is no quantifiable relationship between clinical severity in general and longevity. Obviously there are specific clinical relationships, for example congenital heart malformations are life threatening in an infant where early surgery is dangerous. But “severity” is frequently looked at from the combination of small size, facial characteristics, type of limb defects, and depth of intellectual disability, and these things don’t directly contribute to risk of death. Our research into cause of death in CdLS also did not find an associated physical manifestation (like a missing finger or arm) that would inevitably lead to an early death. Good care that pays attention to the individual child’s needs really assures a close to average lifespan.
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