McKenna

My name is Ashley and I am from Virginia. I have a 12 month old daughter that was diagnosed at birth with BWS. There was no indications that my child would be born with any complications or disabilities. She was born Feb. 27, 2003 weighing 8 lbs/ 19 1/4 inches long at 37 weeks. I had gone into preterm labor at 32 weeks which was fortunately stopped. The day after her arrival her pediatrician called a geneticist in to exam her saying that there were some thins that didn't seem normal. What is normal, and who came up with that? She was born with an abdominal hernia, hypoglycemic, and was in the 97th percentile for her weight, height and head circumference. Never had we expected that there would be anything wrong nor when we were faced with what might possibly be wrong it was devastating. To us she was perfect and no one could change that. The doctors wanted to run all sorts of tests on her in which I consented to a chromosome study. The results came back 46 xx like she is supposed to have. They said she has a very mild case however she still needs close monitoring and ultrasounds along with her AFP screenings. So far with all of the testing she has been great. However she does seem to have some decreased muscle tone as far as not crawling yet but well on her way. Her tongue is enlarge and she has some difficulty swallowing foods with a substance. She seems to be a very happy baby and we could not ask for more. At her 12 month checkup she weighed in at 22lbs, and 29 inches long. I'm concerned about the growth of her tongue as far as her mouth formation and teeth structure. She has eight teeth that seem to be coming in perfectly straight and she definitely knows how to bite you. Her tongue does protrude somewhat but there are times when she does keep it in her mouth. The protruding occurs mostly when sleeping or concentrating on something. She is very curious and determined to be independent but at the same time she finds comfort in her father and I. We have no other children and since then we have decided that one is plenty. The doctor basically said that her father and I didn't "mesh" well together. It scares me to know that she now carries the gene and has a fifty percent chance of passing it on to her children without knowing the severity of the outcome. My biggest concern is that I want her to be able to look at herself as if she is special but not feel as though she is the only one with this syndrome. I wonder all the time how am I going to tell her that she is a little different but she's different in a good way. It's not like she can go to school and find the person next to her with the same syndrome. Her father and I have tried to research this as much as possible and try to protect her from all harm. This is something out of our control and we feel so helpless at times. I know things could be a lot worse but not having someone to feel your concern on a personal level is hard. We have the support of our families and she is loved dearly. I believe with all of my heart that she has been sent to us for a reason, what that reason is we may never know, but in the end, she has made our lives feel complete and I don't know what I would do without her. Thank you for taking the time to hear my story and I give my blessing to all.