“She is such a joy to be around, and it is a privilege to be her mother.”
Elisabeth Weiland, 01/28/2018, Trisomy 13, Provo, UT
Elisabeth is a very happy baby who brings a smile to everyone who holds her. She is currently almost 10 months old. She was diagnosed with Trisomy 13 at 32 weeks gestation. She surprised the many specialists in the delivery room by breathing on her own and opening up her eyes to look at Mom. She also shocked everyone on the other side of the spectrum because has an extreme scalp defect, which did not show up in ultrasound. Her brain was completely exposed at birth, and she was leaking cerebrospinal fluid. Although none of our team had seen or heard of a case of cutis aplasia this severe before, we had a wonderful neurosurgeon and plastic surgeon perform a miracle on her head. She hasn’t needed any other surgeries, except for a G-tube.
Most of her organs are in pretty good condition. She has a lot of seizures which sometimes cause her to stop breathing. She is on several medications to keep seizures under control. They work rather well unless she is sick. She is also on prophylaxis antibiotics to prevent UTI’s.
She has 6 adorable little fingers on each hand. She is such a joy to be around, and it is a privilege to be her mother. She loves holding stuffed animals and playing with toys. Her favorite thing to do is play with her tongue or reach for Dad’s beard. She also loves her brother and rabbit.