Kathleen
Message 1 of 1
My 3 1/2 old infant was born 2 months premature with Hydrops and just now has been diagnosed with congenital lymphedema. It's mainly in his head and neck area. He's still in the NICU unit. We just heard back from Boston Children's hospital that there is nothing they can do for him surgically. My dr told us that he could live anywhere from 5-18 months. Anyone with information PLEASE send it to me so I know what to expect.