My twins were born naturally at 38 weeks, Jack weighed 8 lbs 1 oz and Ben weighed in at 6 lbs 8 oz. I noticed Jack's protruding tongue immediately and I kept asking about it but no one had an explanation for it. Ben does not have BWS, but he did develop a hemangioma (enlarged blood vessel) behind his right eye when he was 8 weeks old. It developed to the size of a golf ball and he had immediate treatment for it. I continued to enquire about Jack's tongue, it didn't seem to cause any breathing or feeding problems. I was eventually referred to the maxilio fascillio doctor who thought he may have some rare syndrome. I was then phoned up by another doctor who told me he definitely had BWS and that he could get tumors and he could be mentally retarded, etc, etc and all this over the phone with no warning or support or knowledge of BWS!! I was horrified by the paeds. attitude and we changed doctors. We eventually did see a geneticist who told us Jack had BWS. He has the enlarged tongue, stork marks on the forehead, overgrowth, one side of his face is slightly larger than the other side (hemihypertrophy). He also has very mild cerebral palsy in his lower limbs. His legs are stiff, and the doctors think maybe this was caused by his low blood sugars at birth which were left untreated for a few days! We found out that the twins were in fact identical and that Ben did not have BWS. Both boys had development delay but now at 20 months they are both doing very well. They are catching up with their development, both are probably at the same stage. Jack's speech is delayed, probably due to his tongue size. One of the worst things was the lack of information on BWS. When I visit the doctors, they ask me what bws is, so I need to be the expert on the subject. I have found the community groups on the internet the best help, where you can talk to others and read other parents stories. Also you don't feel so alone when you know there are others going through the same thing. Jack is a lot bigger than Ben and I guess because of that they don't look like they could be twins. I do get fed up when people say OH ISN'T HE BIGGER THAN HIS BROTHER. I just say yes he is, and don't bother to tell people about his syndrome. Jack has an umbilical hernia and he is quite pot-bellied. He has an ultrasound every 3 months and I feel his tummy myself every week. I am at the minute trying to get the doctors to do AFP tests as they don't do them here.

Pippa
January 22, 2000