Cerebral Palsy – One doctor’s irreversible mistake. A True Story

Cerebral Palsy – A doctor’s irreversible mistake. A true story. Why today though? Because it’s Children’s day and I just feel the need to share this piece as some children out there living with one disability or another probably shouldn’t be left out. Today is for all disabled children especially those who are struggling to be loved and accepted.

Linda was born about 6 months ago in a private Hospital somewhere in Lagos. Everyone was excited. People came home to see her and bring her gifts. Days later, her mum noticed a red patch on her head and brushed it off as a birth mark. A few days after this discovery, Linda developed a high temperature and had difficulty breathing. She was rushed to a general hospital where she was placed in the NICU (Neonatal Intensive Care Unit) plus she even went into a coma. She was in a hospital for 4 solid months.

What happened though? When Linda was born, a forcep was used to aid the delivery. It is possible the forcep wasn’t used properly as it caused an injury to her brain unknown to her parents and possibly known to the doctors and nurses. The brain injury inflicted on Linda via this forceps is what led to the red mark her mum thought was a birth mark and subsequently the high temperature and coma. After 4 months in intensive care, and all manner of tests and treatments, Linda’s parents were told she now had Cerebral Palsy and would never live a normal life – at least not like her big brother. Her mum never fully understood the meaning of all this and believed Linda will get better. She is hoping for a miracle. I am hoping for one too – God I really am.

Using forceps is common practice one I hope I never have to deal with when I have my children thanks to what happened to Linda. Healthcare workers making mistakes is also common even in the so called Western countries. For fear of my life šŸ˜‰ I dare not mention a conversation I had recently with a doctor friend concerning one of their patients.

Cerebral Palsy? What’s that?

Well I first came across this term in the UK when I worked with vulnerable and disabled children and adults. I had a client (an adult) who had Cerebral Palsy. That’s how I learnt about it.

What’s this Cerebral Palsy?

Yeah I know you are wondering what Cerebral Palsy is? I am no expert but as mentioned earlier, years back I cared for an adult with cerebral palsy – it wasn’t easy that’s is what I am so bothered about Baby Linda because I have an idea what her life will be like. So why shouldn’t I hope for a miracle?

According to NHS Choices, Cerebral palsy (CP) isĀ the general termĀ for a number of neurological conditions caused by problems in the brain and nervous system that affect movement and co-ordination. CP is caused by a problem in the parts of the brain responsible for controlling muscles. The conditionĀ can occur if the brain develops abnormally or is damaged before, during or shortly after birth. Symptoms include -muscle stiffness or floppiness, muscle weakness, random and uncontrolled body movements, balance and co-ordination problems, repeated fits and seizures, drooling or swallowing problems. Many use wheelchairs while others walk with braces and clutches. Severity differs.

My client with CP was of course confined to a wheelchair and needed help to bath, get dressed and eat, she was a babe. A babe? Yes a babe. I remember her face so clearly in my mind. She loved pink. She loved a clean pair of socks every morning. She loved her lip gloss. She always liked to be taken into town – shopping, sight seeing and to restaurants. She loved the British soaps and would laugh and laugh while watching Eastenders or Coronation Street or when she overhears us talking about our boyfriends. She was an angel. She was disabled but she knew what she wanted. She wasn’t dumb. I remember once we were all watching TV and there was a very fat lady on TV, my dear Lady B shook her head and said “thank God I am not like that”. We were all surprised. One would think Lady B would feel bad about her situation but instead she preferred to be in her wheelchair than be obese. She was that crazy – in a nice way.

Frequently she visited her parents’ graveside and would take a flower for them. She lived a normal life but she had many challenges. That was in the UK. She had all the support she needed – medical, financial, housing, you name it. If she was in Nigeria, she wouldn’t get a tenth of the support she got from the UK Government. That’s my worry for baby Linda. Will she get all the love and support she needs apart from the one her mum gives to her? What does the future have in store for her? I am hoping for a miracle.

Life and a hope.

They say when life gives you lemons, you should make lemonade out of them. Can lemonade be made out of this situation?

My friend, Linda’s mum went from one Creche to another looking for a place where Linda could be cared for while she worked. No creche will accept Linda. So Nigerians know how to say no to money? None was able to take on Linda – not because they didn’t care but because they knew they didn’t have the facility or expertise to take care of her. Luckily, one of them referred her to a CP centre in Surulere, Lagos. Say what? A CP centre here in Lagos? Yes live in Lagos. The owner and founder apparently has an 8-year old daughter with CP. Do I really have to tell you why she started this centre? Isn’t it obvious? The long and short of it (from what I discovered) is that she unknowingly, then knowingly adopted a baby with CP and was ready to give up her career to care for this child. Hard decision. Who does that?! Only an angel I believe. There is another CP centre in Lekki and Abuja called Benola so I am guessing Nigeria is becoming more understanding of disabilities.

Funny enough, I drove past the Surulere CP centre a few days ago on my way to church and was really surprised! A place I go past at least once a week and never noticed until I had reason to. Oh life! Ever noticed how you decide to buy a certain car because you think it’s special and all of a sudden, every time you are in the road, you notice everyone seems to have one lol. My point is, when you develop an interest in something, somehow nature just gives you a constant reminder of that need and more reasons to either go ahead or dump the idea.

In my heart of hearts, I want to see Linda grow to eat, walk, talk, go to school, get married and have kids like everyone else not be stuck to some wheelchair and be cared for, for the rest of her life. Truth is some do live really good lives and can live normal happy lives but kid you not, it isn’t easy! It is expensive and stressful. There is a Barrister with a master’s degree who has CP but looking at her, you can tell it isn’t severe.

It really annoys me that one doctor’s mistake could change the course of someone’s life forever. It kills me just watching Linda’s mum. She is beautiful, strong and is always smiling but no one knows for sure what’s going on in her mind. I want to help the best way that I can but sometimes I feel stuck knowing there really isn’t much I can do except give and show lots of love and support.

Why do doctors make such deadly and irreversible mistakes? Why do many of them not own up to their mistakes and try to make amends if they can. Could they have saved this baby from this disability she now might live with if they had acted immediately? I know brain injuries are usually permanent but I just have to wonder.

I am so angry. If only we could turn back the hands of time. Yes CP is not the end of the world and yes they can live good normal lives but in Nigeria? I have my doubts.

Dear Reader, what’s your experience with CP? Have you ever had to live with a doctor’s irreversible mistake? Got something to say? Then please leave a comment