May has been designated as Prader-Willi Syndrome Awareness Month. As promised, I will begin my daily posts regarding PWS and what this syndrome has meant for my youngest daughter Clementine and also the rest of our family.
FACT #1:
Prader Willi Syndrome ( PWS ) is a rare genetic disorder affecting approximately 1 in every 15,000 people. It affects all genders and races equally.
Clementine is the youngest of 4 children. When I was pregnant with her I wasn’t aware of any potential abnormalities. I had an amniocentesis preformed because I was considered “advanced maternal age” ( not a favorite description of mine ) and it came back with no concerning findings. I gained a bit less weight with her than I had with my 3 previous pregnancies but I attributed it to being in better shape and taking better care of myself.
I was induced at full term ( 40 weeks). As I was laboring, it was discovered that I had Polyhydramnios, which is excess amniotic fluid. Polyhydramnios can be a sign of fetal abnormalities but it can also be caused by multiple pregnancies and maternal diabetes. When Clementine was born, she was given a 9 out of 10 on the APGAR score. The Apgar test is a test given right after birth to assess the immediate health of the newborn. An Apgar score of 9 is considered a good score. Everything through this point had occurred normally.
That would soon change.