Dec. 21, (PRINTWORDS NEWS) This week, the birthday of a one year old child was celebrated in Pueblo, Colorado. His mother threw a party, and it was a regular affair, complete with balloons, party streamers, presents and guests gushing over the cute birthday boy. The next day, the vent was all over the newspapers and tabloids, and the internet flooded with searches for Nicholas Coke.
Flabbergasted? Don’t be. Not yet, at least. Nicholas Coke was never meant to enjoy the party. He was the centre of attention of all the guests who had assembled to celebrate the miracle that the little boy of one is making every day he lives. Aren’t all children little miracles? Nicholas is even more so. For he wasn’t meant to live at all.
Nicholas was born with a rare genetic malformation called Anencephaly. To put it simply, he was born without a brain. Nicholas doesn’t have a brain, only the brain stem. As a result, he cannot function at all. He cannot move of his own accord, cannot see, eat, smell, sit up, crawl.. he cannot do anything. And he would never be cured of this condition. At least, so far there has been no advancement in that direction.
Anencephaly occurs in one child out of 150,000 to 200,000. It is one of the rarest forms of genetic disorders. An anencephalic child is born without the forebrain, that is, the largest part of the brain that comprises mostly of the cerebral hemispheres. The forebrain contains the cortical parts of the brain, the isocortex and the neocortex, that are responsible for most of the major functions of the body. Consequently, an anencephalic baby is born without the ability to perform any cognitive function or movement. Along with that, the children also cannot hear, see or feel pain.
In the other form of Anencephaly, the baby is born with the main brain stem intact. However, since the cerebrum is missing, there is no chance of the child to ever function normally. In such cases, though, the child is not immune to pain, and is able to perform the reflex functions, that is, it can respond to touch and sound, and can also breathe by itself.
In most cases, the anencephalic child lives only till the end of pregnancy, after which the mother generally suffers a miscarriage. If they are born, the life span of anencephalic children is generally not more than a few hours or at most., a few days. Even during that time, they have to be intubated. But the case of Nicholas Coke has proved to be a medical miracle. For all during this one year that he is living, he is doing so without the help of tubes or doctors.
He is not the only example. One of the first cases that was registered of a baby without a brain was that of Stephanie Keene, better known with the pseudonym Baby K. She became the centre of a major court battle, on humanitarian grounds. The mother was asked to abort the child after the ultrasound revealed the baby’s condition, but she refused. After Baby K was born, she was put on ventilation. The doctors wanted to take her off it, knowing that she would be facing death sooner or later, but after that, but her mother refused, following which she was removed fro it and taken to a nursing facility. She kept having recurring respiratory problems, and after a while, the hospital filed a case asking to be allowed to administer nothing but palliative treatment, arguing that treating the child with advanced medical equipment would serve no purpose. Baby K passed away a few days later.
Anencephaly in children can be diagnosed by ultrasound. Symptoms include missing bones in the front and also around the sides of the head. Also, there are no bones protecting the back of the head. It is a neural tube defect, in which the neural tube does not close completely. The condition is brought about by a deficiency of folic acid, excessive use of anticonvulsant medicines and untreated diabetes. Excessive smoking and drinking, along with other forms of substance abuse can also bring about this condition. What makes matters worse is that the birth of one anencephalic child increases the chance of another such birth in the same family by 3 to 4 percent.
Anencephaly not only raises questions about the wonders of the human body. It also leads one to think about various moral questions about human rights. Generally, the mother bearing an anencephalic child is asked to opt for abortion, an extremely painful, and to be honest, immoral measure. It gives rise to the biggest question of all: whether such a baby should be allowed to live a life that would end only too soon, or should it be given the apparently merciful, more humane option of death.
Among all the questions that swirl in the tangles of a missing brain, confusion reigns. It is a dilemma that has, and will continue to torment many unfortunate mothers. Until medical science finds some blissful cure. For if anything is more excruciatingly painful for the mother than to bid goodbye to the child she rears in her womb for nine months, it is watching it lie in a tangle of tubes, and knowing for sure that a farewell is imminent.
As Sheena says, she knows that one day she would have to bury her son. For there is no saying how long Nicholas will survive in the way he is. Her eyes mist over as she acknowledges her fate. But she knows, that till then, every new day that Nicholas lives is reason enough to celebrate. Every minute is to be thankful for.
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