His name is Nicholas, and he is a miracle child. This little boy living in Pueblo, Colorado, was born with anencephaly, a genetic disease in which a person has no brain, just a brain stem. This means baby Nicholas cannot see, hear, suck, crawl, or sit up. But he has survived without doctors or tubes to celebrate his first birthday.
Anencephaly is a defect in the closure of the neural tube during development in the womb. The neural tube is a narrow channel that folds and closes between the third and fourth weeks of pregnancy, forming the brain and the spinal cord. In rare cases, one end of the neural tube does not close. This results in the absence of a major part of the brain, skull, and scalp.
According to the National Institute of Neurological Disorders and Stroke, anencephaly occurs in about 1 out of 10,000 births, although the exact number is not known because many of these pregnancies result in a miscarriage. Women who have one infant with this disorder are at increased risk of having another child with neural tube defects.
Infants who are born with anencephaly have no forebrain, which is the front and largest part of the brain. The forebrain controls cognitive, sensory, and motor functions, regulates temperature, reproductive functions, eating, sleeping, and display of emotions. They also lack the cerebrum, the part of the brain responsible for thinking and coordinating. The remaining brain tissue is often not covered by bone or skin. A baby born with anencephaly is usually blind, deaf, unconscious, and unable to feel pain.
Some babies, like Nicholas, are born with a rudimentary brain stem. The brain stem is responsible for basic vital life functions, such as breathing, heart beat, and blood pressure. The cause of anencephaly is unknown, although the mother’s diet, including an insufficient intake of folic acid, may play a role. Most scientists, however, believe many other factors are also involved.
Most babies born without a brain die within hours of birth, but Nicholas has beat the odds. According to his mother, Sheena Coke, “He’s a miracle. He’s changed so many lives.” She and her husband have a Christmas miracle in little Nicholas. He may not have a brain, but he has touched many hearts. Happy birthday, Nicholas, and Merry Christmas.
National Institute of Neurological Disorders and Stroke
Newsfirst5.com, Dec. 16 and 18, 2009