SYNDROME

Hello my name is Kathy and i just thought I should share my story it might help some parents that think they are living the worst time of there lives. On Nov of 2007 I gave birth to a baby girl who I named Jacqueline, when i was 23 weeks pregnant they informed me my daughter had Trisomy 21 (down syndrome) and had intestinal problems that had to be attended to right after birth my daughter had  3 surgeries in the first 2 months of her life she had what was called dual duadnal atrecia, she was fine for about 4 months then she had surgurie again for the same reason she had a total of 6 surguries by the time she was 17 months of age, at her 6 surgurie she went into septic shock and had multiple organ disfunction she  past away at the age of 17 months on May 24 2009. At that time I was 3 months pregnant and shortly after I found that my child had enlarged ventricals, the doctors couldn’t tell me how or why or what this condition was, ultrasound thru ultrasound they keept getting larger readings of the ventricles but told me that most of the children are born completly fine. My daughter was born on Nov 14, 2009 she seemed beautiful more than perfect, the doctors told me they needed to do a cat scan on her, they took her and shortly after they brought  me the results, the neurologist stated “your daugher has Dandy Walker Syndrome” I didn’t know what that was how or in what ways it afected her, he explained it to me but my mind was some where else the only thing that I kept repeating in my head was  “SYNDROME”, will I lose my daughter again?  will my daugher go through multiple surgeries? my older children still hurt from there sisters death asking me, Mommy will god take Jocelyne to? my heart was broken once again into tinny peaces, and I didn’t know how to put it back together. As of the results I  did not want to admit my daughter had dandy walker, i wanted to run look for second opinions for someone to tell me she was perfectly fine, she was refered to early intervention but I refused to admit my daughter needed any type of help,  the wonds of loosing my dauther made me deny to my daughter the help and assistant she needed, I refused to get her evaluated for therapies. One day as I observed my daughter I realized she was 4 months and she could hold her head up, that I would give her tummy time and she wouldn’t pull her self up, that she would do anything to stand a bit,  she was just there lying down, thats when it hit me and I realized that I was dening my daughter the right to depend on her self and that YES she has Dandy Walker and that YES she needed help, that is when I realized that I needed to think about today and not yesterday, to think about a good future for her and pray for the best.