Seeing Phoenix

It seems like people have been looking at our son Phoenix — without seeing him, without talking to him — since before he was born. When I was pregnant and the ultrasound showed severe spina bifida and kyphosis (an excessive forward curve in his spine), the specialist told us he had never seen a spine like Phoenix’s. He wasn’t sure how it could be treated and recommended terminating my pregnancy. My husband Mike and I chose not to. Phoenix was born on June 29, 2009, with a lesion at the base of his spine. His spinal cord and nerves were exposed, so his first surgery was a skin graft to cover the lesion. On top of spina bifida and kyphosis, our son was diagnosed with clubfoot and hydrocephalus. It felt like Phoenix was a patient before he was baby. He had 16 specialists — an orthopedic surgeon, neurosurgeon, ophthalmologist, physical therapist and more. Phoenix’s appointments gobbled up 40 hours a week. One doctor would remind me to stretch his legs with every appointment change; another to patch his eye. He didn’t get to be baby, and the back and forth among all of Phoenix’s specialists left me feeling insecure and unsettled as a mother. Was I doing anything right? Doctor after doctor talked at me. Every visit was a constant checklist. My husband Mike and I knew Phoenix’s condition was complex. When we brought him to an appointment, specialists would call their colleagues to show them something they had never seen before. The lesion at the base of his back w...
Source: Thrive, Children's Hospital Boston - Category: Pediatrics Authors: Tags: Our Patients’ Stories clubfoot Dr. Benjamin Warf Dr. Lawrence Karlin Dr. Nedda Hobbs Hydrocephalus kyphosis spina bifida Spina Bifida Clinic Source Type: news