Learning Grace: Our Daughter With Stickler Syndrome
As my wife tells it, our daughter's middle name came to her while she pregnant, concerned about the baby. A word popped into her head: grace. She felt that with this child a lot of grace was to be shown, either to her or by her.
During the birth, the baby's heart rate slowed. The umbilical cord was wrapped around her neck. When she emerged, the cord was quickly unwrapped. Our daughter had facial features like those with Down syndrome, a cleft palate, and an unusually small chin.
Questions swirled: What did she have? What were the physical and mental effects? Would she be all right?