When Sheena Coke delivered a baby on December 18, 2008 in Pueblo, Colorado, she was overjoyed. Unfortunately her newly born son Nicholas Coke was an uncommon baby. He was born with a birth defect known as anencephaly which means baby was born without parts of his brain and skull.
According to Centres for Disease Control and Prevention (CDC), 1 in every 4589 babies in the United States is born with this condition. Anencephaly is one of the most fatal forms of neural tube defects (NTD). NTD is an opening in the spinal cord or brain that can arise in the first few days of human development and so it can only be detected within the first month of pregnancy. According to Duke Centre for Human Genetics, consumption of multivitamins along with 400 micro grams of folic acid daily for at least 4 weeks before a planned pregnancy can prevent this.
Usually babies with this condition are still born or die shortly after birth but Nicholas lived a miraculous life. He was born with only a brain stem and defying all the odds, he lived 3 years and 11 months. He did not rely on any special medical equipment but he had to take various medicines. Given the uncertainty of Nicholas’s life, the entire family spent last 3 years and 11 months enjoying and cherishing each day of his life. He stopped breathing on October 31, 2012 when he was exposed to a viral infection. The month before he died, he became an older brother. His brother was named Jace Nicholas James to honour him.
Grandmother of Nicholas, Sherri Kohut said, “He was our hero because he showed the strength…If he can do this, anything can be done. He will always be remembered.”