The disease exists, so don’t shut your eyes to it

Published: August 24, 2012
Email

Children with cerebral palsy don't worsen over time and may, in fact, get better with treatment. PHOTO: REUTERS

June 1, 2009

I was sweating profusely and felt like a man in a desert, that’s how parched I was. I came home only to be greeted by my family members, who were surprisingly excited and joyous on this horribly hot day.

My mother rushed towards me exclaiming,

“Your aunt Azra* has given birth to her first baby girl!”

Sighing with relief and offering a silent prayer of thanks, I felt a sense contentment for aunt Azra, the mother of two sons, who had been yearning for a daughter. Finally, God had answered her prayers.

I congratulated the whole family and went to the see the newest addition to the family – the little baby girl. She was a beautiful child, as delicate and lovely as a petal.

December 16, 2010

Mother and I sat in the lounge; she stitched while I kept busy with my mobile phone. I noticed that she looked a little preoccupied and after a while, she broke the ice and said:

“Umer*, have you noticed any changes in Arooj*?”

I replied.

“Mother, you know how busy I am. What time to I have for noticing the changes a baby is going through? And what changes are you talking about, anyway?”

“I’m talking about physical changes. She hasn’t starting walking or talking. She shows the symptoms of a mentally ill child. You should see her facial expressions; they are worryingly symptomatic of abnormality!”

“She is only one and half years old! Don’t sweat it; all children develop at different rates. She will start to walk and talk soon.”

July 11, 2011

I overheard my grandmother and mother having a conversation. My mother said,

“Aunty, please ask Furqan* (Arooj’s father) to take Arooj to a paediatrician. She behaves like a mentally ill child.”

My grandmother replied,

“He does not listen to me. Upon asking him the umpteenth time, he took her to some homoeopathic doctor in Kot Chutta. The doctor suggested that they massage the child with a kind of fish oil and she will get better. He said her muscles and joints are developing a little slowly and we needn’t worry, and that she will get better as time passes.”

My mother, who by now was furious at Arooj’s fathers lacking sense of responsibility, exclaimed feverishly,

“He should be ashamed of himself! She is his only daughter. Allah has given him so much. Why does he not invest in her proper treatment at a well-reputed hospital? What is he punishing the poor child for?”

September 18, 2011

I sat with my mother, chatting generally, about everything in life, and ended up asking her about Arooj’s health,

“Any news about Arooj?”

“I don’t know,” my mother answered plainly.

“Well, while I was with her yesterday I examined her myself. I have a feeling that she has some sort of underlying neurological disease. She slouches over while sitting and has an abnormal gait and improper balance,” I said.

My mother replied,

“Do you know what she has?”

“Well, I can’t be sure, but yesterday my neurology professor introduced us to a case that sounds a lot like Arooj’s; a case of a girl the same age as her. I fear Arooj might have Cerebral Palsy (CP). She has some abnormal motor conditions and these conditions can be overcome by physiotherapy and use of certain injections. I also discussed her symptoms with my professor. He agreed that she has a 90 per cent likelihood of CP.”

“Oh God! Have you talked to your uncle about this?” my mother asked.

“Yes, and guess what? He says that she will get better because she plays regularly with her cousins and runs around the house and also tries to speak. He said this physical activity was equivalent to physiotherapy”, I told her.

“I pity them and I pity Arooj. What ignorance! All his money will be left behind. What about Arooj? It’s not her fault. If something serious happens to her as she grows up, then what will she do?”

Arooj has cerebral palsy. I took her to a neurologist myself and he confirmed the diagnosis. Her father is not willing to start her treatment. This is something which I am not going to discuss here. I did what I could do as a responsible citizen and medical student. Her father was furious at me for taking her to the doctor without his permission.

Cerebral Palsy or CP is an umbrella term which includes a group of non-progressive motor conditions that cause physical disability in human development mainly in the various areas of body movement. ‘Cerebral’ refers to cerebrum which is a part of the brain, and ‘Palsy’ refers to disorderly movement.

The symptoms of this neurological condition in children include an abnormal muscle tone, unsteady gait, floppy muscles, problems with balance, speech difficulty, irregular breathing, increased drooling, slower than normal growth and difficulty in swallowing and sucking.

The brain injury that causes CP sometimes occurs early in the pregnancy, while the baby’s brain is still developing. It can also occur much later in the pregnancy, during delivery, or early in a baby’s life. The diagnosis of cerebral palsy is usually made when a parent or paediatrician notices that a child isn’t meeting his physical and/or behavioural developmental milestones. Although, there is no cure for CP, treatment usually includes speech therapy, massage therapy, occupational therapy, physical therapy and surgery on stiff tendons and joints.

Children with Cerebral Palsy don’t worsen over time and may, in fact, get better with treatment. So, it is the responsibility of every parent to provide their child with the best possible care not only for CP but for every other disease or condition their child may be suffering from.

In Pakistan, people tend to ignore a problem till it becomes too big to deal with. Often, a cancerous lump is dismissed as ‘swelling’ or ‘baal tor’. Self diagnosis, as such, could lead to inevitable death. This is doubly upsetting as often the problem which was being avoided in the first place was an easy fix to begin with.

While I agree with the principle of  ‘to each their own’, I would just like to say that please take notice of your child’s behavioural pattern and physical functioning before its too late. Your child is your responsibility and while you may wish to ignore your own health, doing so to an innocent child is plain cruel. A little negligence now can make their life unnecessarily miserable in the future.

So please, own up to your responsibilities and look after your children.

*Names have been changed to protect identities  

Read more by Usman here or follow him on Twitter @neuroguy24

Usman.Amjad

Dr Usman Amjad

A medical doctor who is interested in behavioral neuroscience and studying mental disorders.

The views expressed by the writer and the reader comments do not necessarily reflect the views and policies of The Express Tribune.