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The Free State infant born with a birth defect that resulted in his brain growing outside his head has been moved to a hospital closer to home.
Baby Sibusiso was born with encephalocele, which means his neural tube failed to close completely during foetal development and his brain grew in a sac outside his head.
On Tuesdayy, he and his mother Mantwa Mokoena were transported to Mafube Hospital in Frankfort, closer to her Tweeling home. Sibusiso was born in Mafube on July 4 and later taken to Universitas Hospital in Bloemfontein, then later to Boitumelo Hospital in Kroonstad. He will go to Universitas for a check-up.
Doctors have told the parents there was no cure for Sibusiso’s condition and that all they could do for him was to give him palliative care until the inevitable happens.
Despite having been counselled on the possibility that her son might die any time, Mokoena said this was difficult to accept.
“I do not want to believe that he will die, I just keep praying for a cure.”
Sibusiso’s condition makes it difficult for him to wear clothes, so he is kept in an incubator. He also can’t suckle nor take milk from a bottle, so he is fed through a feeding tube.
Mokoena puts her hands through the incubator to touch him and to speak to him. But, she said what made her sad was not being able to pick him up and comfort him when he feels pain.
“This thing at the back (of the) head pulls his head and when that happens, he starts opening his mouth wide and starts breathing heavily. He will cry and clench his hands as if he is having fits. All I can do is touch him and say ‘sorry’,” Mokoena said.
Sibusiso can only sleep on his side and nurses have to constantly change his position.