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Mantwa Mokoena, 25, is praying for a miracle. Every day she has been at her son’s hospital crib at the neo natal unit of Kroonstad’s Boitumelo hospital in the Free State.
Every three hours, since he was born on July 4, she expresses milk into a cup to be fed to baby Sibusiso via a tube.
And every minute might be his last. Doctors say there is nothing that can be done for him. His condition is officially “incompatible with life”. Sibusiso was born with anencephaly, a birth defect that resulted in his brain growing outside his head.
According to his paediatrician, Dr Lizzy Tabane, the condition occurs early in the pregnancy at about four weeks after fertilisation, when the brain is still being formed. As the baby develops the skull does not close properly, leaving a hole at the back of his head.
As a result, she said, most of the brain grew outside the head and is now covered with a very thin membrane.
Infants with anencephaly usually have a brain stem, which controls reflexes like breathing, but they do not have a forebrain or cerebrum which controls thinking.
“The brain that was formed is abnormal. The brain consists of the cerebral hemispheres on the sides, the cerebellum at the back, as well as the brain stem. He has no cerebrum or cerebral hemisphere, just brain tissue and a brain stem which is connected to the spinal cord and helps him to breathe. But unfortunately he won’t last long and there is nothing we can do about it. There is no quality of life without a brain. All that we can do is offer him palliative care as there is nothing curative about his case,” Tabane said.
But despite being told that her first child may die at any time, Mokoena was praying for a miracle.
While Mokoena understands the seriousness of her baby’s condition, she says she is “waiting for him to get better; I have hope that he will be fine”.
“I am so scared of lifting him up in case I hurt him. That part at the back containing his brain is very soft, it’s like touching a plastic with water. So I’m scared I will tear it.”
Mokoena’s partner, Sandile Sithole, 29, has refused to accept that there is nothing that can be done for his baby boy and is searching for assistance.
“He is hurting. This is his first child and it is difficult for him to accept what happened,” Mokoena said. Tabane said they had already counselled the couple and told them that there was nothing they could do for him except to “let nature take its course”. All they are doing is to keep the baby at the hospital, help feed him and also make him comfortable.
In her 17 years of being a doctor, Tabane said, Sibusiso was the third case of anencephaly she had seen. The first child died after a week and the second one after four weeks.
According to Wikipedia, there is no cure or standard treatment for anencephaly and the prognosis for patients is death. Most anencephalic foetuses do not survive birth, accounting for 55 percent of non-aborted cases. If the infant is not stillborn, then he or she will usually die within a few hours or days after birth from cardio-respiratory arrest.
There have been three recorded cases of children who were born with anencephaly and lived longer. Stephanie Keene of Virginia, US, lived for two years 174 days, and Nicholas Coke, of Pueblo, Colorado, who as of July of 2012, is still living at three and a half years, and Vitoria de Cristo, born in January 2010 and who is still alive.
Anencephaly occurs in about four out of 10 000 births. The exact number is unknown as many of these pregnancies are miscarried. Having one infant with this condition increases the risk of having another with neural tube defects.