Saturday, May 4, 2013

PWS Awareness Day #4: Newborns with PWS

When they are born, babies with PWS are usually very floppy due to low muscle tone. They almost always have feeding difficulties of some kind, often leading to failure to thrive and use of an NG or G-tube for nourishment. Babies with PWS typically sleep a LOT, often for the first 6 months, so early intervention and stimulation are very important. Milestones are often delayed to some extent. And these babies, I have to say, are ridiculously cute. :)

When Dean was born, his muscle tone was so poor that he really could barely move. He had a weak cry (some babies with PWS can't cry at all) and was born with almost no reflexes. He was extremely anemic, had very low blood sugar, and slept all but 30 minutes every day in the beginning. Before doctors knew what was going on with him, they assumed he had some sort of brain damage or a number of other conditions that would have left him with a much worse prognosis. I asked a doctor if Dean was going to be in a vegetative state forever and he said, "right now, we really don't know." We are thankful for the geneticist at Children's Hospital Boston who saw him on day 2 of his life and knew exactly what was going on.







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