Jeffrey Marotz and his family may have driven to Boston Children’s Hospital from their home in New York, but it was really the boy’s feet that brought him here.
Born with severe spina bifida, a complex birth defect that affects the development of a child’s spinal cord, spine and brain, Jeffrey had also been diagnosed with clubfoot, a related orthopedic condition that causes the foot to twist unnaturally.
Previous surgeries hadn’t worked and the braces that had been custom made for then three-year-old Jeffrey didn’t fit correctly. “Nothing was working,” says his mom, Michelle. …
“Be glad you can use your legs now. You might not always be able to.”
That’s what Morgan Gautreau was told by a neurosurgeon in Alabama six years ago, one of many doctors she had seen seeking a solution for her nearly constant back pain caused by a tethered spinal cord, a condition where the spinal cord is attached to tissue around the spine and can’t move freely within the spinal canal. Morgan’s tethered cord was due to spina bifida occulta, a type of neural tube defect where the spinal column doesn’t develop properly.
Luckily, she and her family didn’t take his words to heart, but kept looking for help. …
Bedwetting, otherwise known as urinary incontinence or enuresis, is fairly common, often embarrassing and sometimes difficult to talk about. It is estimated that about 20 percent of boys and 17 percent of girls, ages 6 to 7 years old have some problem with daytime or nighttime wetting. Still, many kids are reluctant to talk about wetting with parents, friends and teachers. Parents themselves often have a hard time confronting the issue.
The Voiding Improvement Program (VIP) at Boston Children’s Hospital offers a comprehensive approach to bedwetting tailored to each child’s individual needs. “Our program is driven by highly skilled and compassionate nurses who understand both the physiologic and emotional issues surrounding urinary issues,” says Pamela Kelly, the program’s nurse director. Treatment may include biofeedback training, relaxation therapy such as guided therapy and behavioral therapy.
Listen to Colton and Lena talk about their relationship.
My little sister, Lena, was born in Denver, Colorado, on Feb. 24, 2000. My recollection of that day and the weeks that followed is hazy — not only because I was just six years old, but also because I was being shuttled between several relatives while my parents attended to some “medical problem” my sister had, which I couldn’t really understand.
The words spina bifida didn’t mean much to me, but between my parents’ solemnity and the fact that — as it was explained to me — the doctors needed to cut into my sister’s back with a laser, I started to get an abstract, naive idea of the seriousness of the whole thing.