Hello my name is Debra and I have a 18 month old daughter named Dakota with BWS. At birth she was diagnosed with Turner Syndrome and her doctor suggested  seeing a genetics specialist. She seen the specialist when she was 4 months  old. He also informed us that I had had it when I was a baby. He was able to tell this from a photo of me when I was 4 months old.

Some of the symptoms of BWS that Dakota has shown was since birth to about the age of 8 months old, she had the large protuding tounge. It went down on its own and did not need surgery. She also had an umbilical hernia. For quite some time it was about the size of a quarter and about 2-3 inches in height. She never cared to crawl and would cry frantically when placed on her stomach. Her doctor feels that it was due to the hernia. She goes up the hospitol every three months and has an ultrasound done on her abdomine to check her kidenys for tumors. She has been lucky and has had no signs of them.

Dakota is the only child of ours and most likely will be. We just dont like the chance of passing it on to other children. It has been very stressful for me as well as my husband. But we are sticking together through it. We have had a lot of family support as well as support from her doctor. She will be seeing the genetic specialist again in August. This will just be a follow up on how she is doing. Just in the last week or so Dakota has started seeing a speech therapist and will start seeing a teacher for her motor skills as well. I am not sure if this is caused by BWS or not. She has only a few word such as mom and da da. She also just recently started walking on her own. She would walk but only with the aid of my fingers.

She now seems to be doing really well. When she was born, she was three weeks early and weighed in at 6 lbs. 2.7 oz. and was 18 inches long. Her doctor suggested that she was early because she had no more room to grow. I could tell this because she did not do a whole lot of moving from about two weeks until she was born. After birth she quit breathing while I was breast feeding her. From about 10 minutes old she spent approximantly 24 hours in NICU. We were then there for two more days and went home. At home she seemed to do really good. There were times she would have a hard time breathing through her mouth due to the enlarged tongue. When she would nurse or eat baby food she would sometimes choke.

I count my blessings every day that she has not had any major complications due to this syndrome. I have read some of the other stories and my heart goes out to the families that have had it worse then ours. If there are any families out there that would like to email me just to talk it would be greatly appreciated.

Sincerely,

Debra