My Story

My name is Isabella (my family calls me Bella). I was born on March 1, 2010 with a rare birth defect called Pierre Robin's Sequence. Nobody even knew I had it at first, but then my mommy started to notice all this weird stuff I was doing. First, I just couldn't nurse... I always made this popping sound when I tried to eat, my mouth wouldn't latch and I was getting so tired, and so hungry, and so frustrated. Then I had to get my tummy and lungs pumped because they were all full of yucky fluid. When I was two days old I had my hearing screening and I didn't pass. My ears were full of fluid too. And then it happened... I had just had it... I was starving and tired and angry. So, I did what every tired, angry baby does... I started to scream. And mommy just laid me back and stared at me. And she saw my throat. It was only the size of a straw hole and I didn't have a uvula. Weird huh ? So my mommy told the nurse and they discovered I had an isolated cleft palate. They showed my pediatrician and mommy started doing research online. Mommy and the pediatrician thought I had Pierre Robin's Sequence so my pediatrician referred me to Dr. Chen. He is my craniofacial specialist. I met him today for the first time and I really like him a lot. He is going to make sure that my mouth gets fixed but he can't do surgery until I am six months old. He told us today that I will be seeing a team of eight specialists for different things from now until I turn eighteen. They are all gonna take good care of me and that makes my mommy and daddy very happy. Talk to you again soon!