PWS is a genetic disorder, in that it involves genes, however, it’s not necessarily hereditary nor does it run in a family (in most cases). 95% of the time, it is a total random occurrence….occurring in 1 out of every 15,000 births. So basically any of us have the same chances of having a child with PWS. However, in very rare cases (less than 5%), PWS is caused by an imprinting error (where the paternal 15th chromosome is present, but for some reason just not working) and that father has a 50/50 chance of having a child with PWS.
While PWS is very rare, it is actually the most common known genetic cause of life-threatening obesity in children. But like you Lynsey, I had never heard of it before the doctors told me they were testing Clover for it. This is why awareness is so important. If people don’t know about it, then they aren’t doing anything to support research. The more people who know, the more likely they are to give money to research and rally together to find a cure! And we desperately need a cure!!!
The next part of the question was if Clover’s birth parents would have known she might be born with PWS. No, there is no way they would have known. Her birth mom had a pretty uneventful pregnancy, and just like any expecting parent, we were all hoping for (and expecting) a healthy baby. We were all surprised about the diagnosis of Prader-Willi Syndrome (as are most families). There really isn't any clue or main symptom during pregnancy that screams, PRADER WILLI SYNDROME. Most families don't know anything is wrong until the baby is born and they are all just as shocked to learn about PWS. While there are some similar symptoms that moms experience during pregnancy (more amniotic fluid than normal and less fetal movement), none of these symptoms would make any doctor or parent think of PWS. Also, most PWS babies are born via c-section. They don't handle labor well and sometimes this can be the first real sign that something may be wrong with the baby.
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