In most ways, Amanda LePage is just like any other rambunctious fourth grader. She loves school, dance class, playing basketball and keeping up with her twin sister Macy and older brother Nathan. Sometimes it just takes her a little longer to do these everyday things. That’s because Amanda has been through a lot in her short nine years.
Amanda was just 5 months old when she was brought by helicopter to Boston Children’s Hospital for a hemorrhage in her brain from an intracranial aneurysm, a type of vascular malformation. Despite long odds, Amanda survived two life-saving brain surgeries and a massive stroke that left her with cognitive delays, no use of her left arm or hand, and weakness in her left leg. …
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.
Melyssa Perkins was 25 weeks into a healthy pregnancy with her first child when she began to have abdominal pain. She called her local nurse who said she was probably dehydrated, but when water didn’t help and the pain increased, Melyssa and her husband Jamie rushed to nearby Beverly Hospital, where they discovered that she was fully dilated.
“I don’t think I said one word at that point. I was in complete shock,” recalls Melyssa. Two hours after the couple arrived at the hospital, their son Jace was born at 1lb. 12 oz. Beverly Hospital stabilized Jace and arranged for immediate transport to the Neonatal Intensive Care Unit (NICU) at Boston Children’s Hospital. …
Other than being born a little early—at 37 weeks—everything started out fine for Liam Hammond. “He was a healthy baby, it was a healthy birth, and he was progressing and meeting his milestones,” says his mother Jennifer.
But at his 4-month-old check-up, “Something about his head looked different to me.”
Liam’s head circumference was normal, though, and he was in the same head-growth percentile as at his last visit. The pediatrician suggested Jennifer keep watching it.
Two weeks later, the family left for a seaside Memorial Day weekend vacation. “I was pretty sure his head was swelling,” Jennifer says. “No one else could really see it, but the distance from the top of his eyebrow to the top of his head looked wider. By Sunday evening, he was very fussy, and it seemed like the vein down the center of his forehead was more prominent.”
Jennifer and her husband decided to cut their weekend short, leaving Monday morning rather than evening. Jennifer noticed that the fontanelle at the top of Liam’s head—where the bones of his skull had not yet fused together—was no longer soft.
Hours later they arrived at their local hospital, which took a CT scan. “The emergency room doctor came in and looked as white as a ghost,” Jennifer recalls. “She said, ‘Your baby has a mass in his head.’ She had already arranged a transfer.”