I have a daughter who was diagnosed with a cleft palate two hours after birth (missing most of the hard and soft pallet). The next day she was diagnosed with Pierre Robin Syndrome. She had a nasogastric feeding tube for the first four weeks and was on oxygen for the first nine months of her life. She started on breast/ formula milk mix due to not putting on any weight she was put on a high calorie formula and weened early. We are now on operation number two for the palate. And thanks to the very informative CLAPA website and an over keen mum two months ago my daughter was diagnosed as having type 1 sticklers syndrome. On a more personal note I have a degree in biotechnology and worked in genetic research for a number of years. My daughter is pretty awesome and learning new things every day, which keeps me on my toes.