Jack ’s journey managing Robin sequence

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. What is Pierre Robin sequence? The MRI revealed that Jennifer and husband Matt’s unborn baby had Robin sequence, a condition where a small lower jaw or micrognathia pushes the tongue backward, making it difficult to breath. “No one I knew had ever heard of the condition, but I told myself what I tell parents at work all the time — don’t Google it,” says Jennifer. “I had worked with kids with disabilities for...
Source: Thrive, Children's Hospital Boston - Category: Pediatrics Authors: Tags: Diseases & Conditions Our Patients’ Stories Research and Innovation Cleft and Craniofacial Center cleft palate Dr. Carolyn Rogers Dr. Cory Resnick Pierre Robin sequence Source Type: news

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