Imagine your child being born without a brain.
It's what April Barrett faced six years ago when her daughter Kaliysha was born with hydranencephaly.
"My doctor told me a week before I delivered that she would be born without a brain and he told me to go take a picture of my belly that that would be the last time she would be alive," Barrett says in the Fox 59 report above.
But Kaliysha survived for six years with only a brain stem and is still alive today. This is unusual because, according to the National Institute of Neurological Disorders and Stroke, "many children with this disorder die before age 1. However, in rare cases, children with hydranencephaly may survive for several years or more."
Kaliysha is now on hospice care after "an illness damaged what little use she had in her brain stem." As her mom gets ready to say goodbye, she says she cannot afford her daughter's funeral and burial. Those who wish to help can donate at any Chase Bank. The family has set up a fund called "Pace of Miracles." Read more in this Fox 59 report.
What exactly is hydranencephaly? Here is a definition from the National Institute of Neurological Disorders and Stroke:
Hydranencephaly is a rare condition in which the brain's cerebral hemispheres are absent and replaced by sacs filled with cerebrospinal fluid. An infant with hydranencephaly may appear normal at birth. The infant's head size and spontaneous reflexes such as sucking, swallowing, crying, and moving the arms and legs may all seem normal. However, after a few weeks the infant usually becomes irritable and has increased muscle tone. After a few months of life, seizures and hydrocephalus (excessive accumulation of cerebrospinal fluid in the brain) may develop. Other symptoms may include visual impairment, lack of growth, deafness, blindness, spastic quadriparesis (paralysis), and intellectual deficits.
Families can find support at the Global Hydranencephaly Foundation website or Rays of Sunshine, an international website and support group for families of children with hydranencephaly.
