Stories about: Pierre Robin sequence

Taking my own advice: When the professional becomes a parent

Treatment of Robin sequence.

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.

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Jack’s journey managing Robin sequence

Pierre Robin Sequence, Jack Ryan
Jennifer and 8-week-old Jack

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.

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