'That’s when I went crazy'

“...I knew by eight months, he should be sitting upright, but he wasn’t doing that. Anytime we had subsequent appointments with him [at the neonatal intensive care unit (NICU)], I kept complaining. I would stand there and say: “Ah, my child should sit, but he bends. He can’t sit upright. At eight months, he should be even crawling, should be trying to hold things and even to be able to stand...” And they told me, “Oh, he will do it, he will do it.” ...

One day, when we went back to NICU, I told them that I took the child somewhere [to see another pediatrician], and this is what I was told [that the child has cerebral palsy

(CP)]. At the time I had thought that CP was just like malaria -- you treat it and then it’s gone. I told them I’ve already started physiotherapy. So the NICU people, I don’t know, the doctor, I don’t know what was wrong with her. She flared up! She got angry that I have taken the child somewhere. She started talking, and then she just opened her mouth up and told me, “Your child’s brain is damaged.” She just told me like that. So I was like, “My child’s brain is damaged?” That is where I went, I just, I went crazy.

I started shouting at her. I shouted. I said to her that I have never seen a doctor using the word damaged. You can tell me the child’s brain is affected, I would accept it, but damaged?— that means there is nothing that can be done about it. As far as I know, a damaged brain doesn’t know the mother. But my child knows me. So I was crying while I was talking. I was shouting.

The head of that department and the doctor came out. My child was on my chest, and I was shouting--and I said to her, “Do you know what you’ve said can kill me and leave this child without a mother?”... Then the head sat me down and explained to me that the chart says the child should do certain things, but at this age, he is not doing it. They have to refer me to the neuro clinic so that they will check the brain. So when I came home, I still didn’t know what cerebral palsy was. I didn’t. It didn’t even occur to me to Google it or something like that. When I will go to physiotherapy, and I will see other women with their kids. I can see that some are grown, but they are not walking. So I’ll tell my sister, ah, this one, he has teeth though, and he is not walking. Why? I didn’t understand. I thought -- ah, I’ve never seen anything like that before! So it was one day, I sat down and I just said, “Ah, cerebral palsy.” It just occurred to me to Google it. It was when I was about to go to bed. I just Googled it.

That day I didn’t sleep. I wept throughout the night— because as I was Googling it, I was just searching for a cure. Cure. Cure. Everywhere I looked they said there’s no cure. You can only manage it. So that day I wept. I didn’t sleep. I wept throughout the night. So that was where I came face to face with the condition of my son. So that is when— eight months — that is when I got my child’s diagnosis of cerebral palsy.”

Michael Arthur