Vanessa’s rash first appeared on her arms and legs when she was 3 or 4 months old. It was red and bumpy and went away when she was sick with a virus, which happened often. Then it would come back. The dermatology team she saw at Boston Children’s Hospital was puzzled.
“I was expecting they were going to think it was nothing, but they took it very seriously,” says Katherine Bell, one of Vanessa’s mothers. “They took a biopsy and very quickly realized they had no idea what it was.”
Vanessa’s case was even featured at a regional dermatology conference where doctors take up mystery patients. “A hundred to 150 dermatologists looked at her,” says Katherine. But no one could pinpoint a diagnosis. …
As a disability expert, my whole career has been spent giving parents advice. I’ve given advice on parenting, doctors, child development, school and resources to support them. I was confident working with families and helping them navigate the often crazy and overwhelming world of special needs. But when I was 34 weeks pregnant with my own child, I found myself on the other side of the situation. …
Juan was looking forward to having his son, Fredy, 14, finally come home to live with him. The teenager had been living under the care of his grandmother since he was a toddler.
But on that long-awaited homecoming day, Juan was quickly jarred from feeling great joy to grave concern.
“When I saw his face, one side looked very different from the other and his lip was swollen,” says Juan. “He admitted right away that his face had been hurting.”
Juan remembered that the last time he’d seen his son — more than one year ago — Fredy’s face had looked slightly different then too. But whatever was happening, the situation had clearly become much worse since then. Something was undeniably very, very wrong. …
Jennifer Ryan is a disability expert. She started her career doing home visits with drug-addicted and abused babies, then ran a center and started a program for kids with autism and now works in a collaborative elementary school.
But nothing prepared this new mom for the challenges she would face with her own child.
“It’s completely different when it’s your own,” she says now, after her son Jack was treated at Boston Children’s Hospital’s Cleft and Craniofacial Center for a group of birth defects known as Pierre Robin sequence or just Robin sequence.
For the first and second trimesters of Jennifer’s pregnancy, everything looked perfect. At 30 weeks, a blood clot put Jennifer in the hospital and her pregnancy at risk. As a standard precaution for any high-risk pregnancy, more ultrasounds and tests were ordered. Doctors were concerned about one of the scans, so Jennifer was sent to Boston Children’s for an MRI.
That’s when things got complicated.