I have 4 children, ages 9,7,4, and 8wks. My pregnancy with my youngest was healthy, no complications. When she was born on 5/24, the NICU doc at the delivery immediately noticed something was wrong. They call a bunch of specialists in and ended up transferring her (and me) to a higher level facility where she spend 9 days in the NICU for tests. She was finally diagnosed with a large hemangioma on her diaper area, which resulted in a tethered spinal cord and exstrophic bladder. It's called PELVIS syndrome. It's very rare, so there isn't a lot of information out there on it. We have an excellent team of specialists here in Indianapolis which I am grateful for, but we are only starting to learn what her next few years will be like. We have one surgery planned for October (for her spinal cord), the bladder will follow, and we are treating the hemangioma with propanolol, a beta blocker, that requires frequent monitoring of her blood pressure and for her to eat every 5 hours, even at night, to keep her blood sugar stable. It is very overwhelming to have a child with a birth defect, especially when I have three others who are healthy. Her needs alone keep me hopping, but add everyone elses needs and I am one tired momma. I am glad I found this board, it will be encouraging to me to meet other moms with similar situations!