Dylan was born on Feb. 20, 2009 and weighed in at 5lbs13oz and measured 18″ long. I had an uneventful pregnancy until 29 weeks when I was diagnosed as having IUGR. To make a very long story short, I had every test in the book performed and multiple ultrasounds and everything came back as “normal” which lead us to believe that everything was fine with our little baby boy. After birth Dylan was found to have a cleft palate, hypospadias, undescended testes, heart murmur, kidney reflux, and a tethered spinal cord. These findings prompted doctors to test for any genetic defects. One week after birth Dylan was diagnosed with WHS. It was a very shocking diagnosis for us and we had a very rough time during the first few months.Â
Fast forward one year and he is doing wonderful. So much better than we or the doctors ever expected. He had surgery to repair his cleft palate in December and will be having surgery for his tethered spinal cord next week. His ASD has almost completely closed on its own. He remains on daily Amoxicillin for the kidney reflux and so far has never once had a UTI. He is very healthy and eats great. He receives PT/OT and in-home therapy 3x’s/week. He can sit independently with very light support, can roll over, he plays with toys, laughs, coos, smiles and loves his big sister. Our life hasn’t been the easiest but we make the best of it and feel very blessed to have Dylan in our lives. He is truly our little angel.
Kristy
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My grandchild have WHS,And I wouldn’t trade her for the world.
Belated congratulations on Dylan’s birth. I have just started to read Dylan’s story. Every birth and child with WHS seems to come with their own set of surprises. Dylan had more than his fair share with cleft palate, heart, kidney, spinal, and other problems. This must have been very difficult for you to accept after being reassured that everything was normal. You have a positive attitude and willingness to a deal with it all, with love.