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Understanding cerebral palsy and coping with it.

Smiling boy with cerebral palsy oan a wheel chair
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“Next class is very important, and you better not miss it or else you’ve lost ten marks!” Mrs Dada said sternly, her usual gap-toothed smile missing. It was strange because she was the most jovial lecturer we had.

So, on Friday, there was a palpable, electrical tension in the lecture hall as we trooped in, wondering what was going on. When Mrs. Dada came in, she walked straight to the board and wrote the words ‘CEREBRAL PALSY ’.

“Morning class,” she began, “this is a very important topic for every nurse and midwife to understand, which is why I said no one should miss this class. To get the ball rolling, watch this short video and note whatever questions you have.

I leaned forward expectantly in my seat as the projector started and the lights went out.

**************

A woman, who was backing the camera, was talking with a young man in a TV station.

In a smooth baritone, he said, “Let’s replay how this journey began for you, ma’am.”

Then the scene changed to a drama showing a very upset pregnant woman leaving a hospital. She glanced at her watch for the third time and began a monologue:

“These hospital people can’t keep delaying me every time in the name of antenatal clinic. They keep shouting short-staffed, short-staffed – how is that one my business?! Infact, I’m not coming again. I’m not a JJC in this matter; I already have three children. Kumi my neighbour takes home deliveries without all this stress. Mschew!” she hissed as she stormed off.

Scene 2: A woman stuck her head through the cream curtain that hung over the entrance to a room. “How are you feeling, Lade?” she said.

“Feeling?! I’m not feeling! I’m in pain and I’m tired… Yeeeeeee!” Lade screamed as another contraction started. She was in labour.

A middle-aged man with a tinge of grey hair stood cautiously at the door of the blue-walled room, anxiety displayed all over him. “Kumi, what is happening?” he asked. “My wife has been in labour for almost thirty hours,” he said pointing to the small orange clock on the wall. “Let’s move to the hospital.”

“Pray more. Don’t worry,” Kumi replied.

Scene 3: Fifteen hours later, Kumi was holding a baby boy upside down. She smacked his butt and he let out a small weak, cry. Kumi’s lips parted in a satisfied smile. She cleaned him up and handed him over to his mother, Lade.

New born baby who went through prolonged labour and is at risk of asphyxia and cerebral palsy

“My Boboye! My precious Boboye!” Lade said with an exhausted smile.

Scene 4: (Two years later…..)

Lade was in the hospital with her son, Boboye.

“Madam, it’s confirmed. Your son has cerebral palsy,” the doctor said.

There was a blank expression on Lade’s face as she recalled all they had been through: Shortly after the delivery, Boboye began having convulsions so they took him to the hospital. He was admitted for a long while and eventually discharged. However, whenever anyone carried Boboye, he would arch his back as though he wanted to run away. By the time he was six months, he couldn’t hold his neck up by himself, even though other children did that from three months. He didn’t crawl till he was a year old, and even then, he would use only his left hand and knee while dragging the right behind. And now, at age two, Boboye could not walk.

“Doctor, you mean my precious Boboye has cerebral palsy?” Lade asked as she returned to the present.

“I’m sorry madam but that’s the situation,” the doctor replied.

“What is cerebral palsy again?” Lade queried.

“Cerebral palsy is a condition in which a person has difficulty in movement, and in maintaining balance and posture, because of a brain damage that happened while the brain was still developing. This brain development starts from when a baby is conceived, all through pregnancy, delivery, and up to the first few years of life.”

“And it is caused by?”

“Well, it’s a long list. Some common causes include low blood flow or low oxygen to the brain, or severe bleeding into the brain. A baby born prematurely or who went through a difficult delivery may experience these. Brain infections, severe forms of jaundice, low blood sugar for long periods of time, and low levels of thyroid hormones in the baby could also cause such brain damage. The peculiar thing about brain damage in cerebral palsy is that it’s a one-time event, so it doesn’t get worse, although, symptoms may manifest at different times.”

Cerebral palsy is caused by non-progressive brain damage that occurs during the developmental period

“So why does my own Boboye, have it?” Lade asked.

“You had prolonged labour – more than sixteen hours of active labour – and that is the prime suspect. When labour is prolonged, the baby’s brain may not get adequate oxygen, what we call asphyxia. Asphyxia puts a baby at risk of brain damage.”

Lade was quite for a moment and then asked,

“What does cerebral palsy really mean? How does it manifest practically in day-to-day life?”

“The truth is cerebral palsy manifests differently for each person because it depends on which part of the brain was affected and how severe the brain injury was – so it’s mild in some people and profound in others. They may move, speak, or eat awkwardly, or be unable to do these. The reason is that cerebral palsy makes the muscles too stiff, too floppy (weak), or sometimes both.

Generally speaking though, it is movement and posture that is usually a challenge, not intelligence. It is only in very severe cases that intelligence is reduced. It’s just sad that we live in a world that tends to judge books by covers, so when people see someone with cerebral palsy, they assume he is mentally retarded. But that’s just wrong,” the doctor said, somewhat sadly.

“Can it be cured?” Lade asked.

The doctor grimaced as he responded. “There is no known cure yet because brain damage is often irreversible…”

“Yeeeee…..Doctor, does this mean my child will be like this forever? He will not walk or talk? Please, there has to be a way! There just has to be a way!” Lade cried in anguish.

“Ma’am, there is a way but not a cure,” the doctor replied compassionately.

A glimmer of hope flickered across Lade’s face as she waited for him to go on.

“With adequate support and physiotherapy, your child may be able to reach some or all of those milestones, but at his own time. Each child responds differently so there is no guarantee. For instance, some children may be able to walk with support shoes and braces while others may not, and may need wheelchairs or someone to carry them.

On the other hand, it may not be so obvious in those with mild cases. Same for speech and other aspects. You must understand that it’s a lifelong journey and you need to support your child and be supported as well. There are resources and support groups that can make this journey easier for you.”

“Hmmmmmm,” Lade sighed deeply, as the drama ended.

The scene changed back to the TV station.

“So that was how my journey on caring for a child with cerebral palsy began,” the woman, Lade said. “And here we are, twenty-five years later. It’s almost unbelievable! My precious Boboye is doing great. He is a prolific writer and speaker. His first two books are bestsellers and the third one is on the way. I’m so grateful for how far we’ve come.”

“That’s wonderful.”

“Thank you.”

How were you able to cope with the challenges of caring for a child with cerebral palsy?”

“Well, after a period of mourning and dejection over my silly mistake, I realized that I could choose to be bitter or better. So I learned everything I could about cerebral palsy. I found great resources online and joined communities of parents whose children also had cerebral palsy. It helped me know that I’m not alone. My husband was and is also a key pillar because he was very involved, not leaving the responsibility to me alone. My parents and immediate family also supported me. Then I found inspiration from Farida Bedwei, a software genius, and several others who are succeeding in life in spite of cerebral palsy. Their stories keep me motivated.

Then after a while, I gathered courage and went to nursing school as proof that caring for a child with cerebral palsy is not the end of the world, and thankfully, here I am now serving as the head of department of one of the most prestigious nursing schools in the country,” she responded.

“Wow! That’s really amazing!”

“Thank you.”

“One more question, why did you choose to share your story now on national TV?”

“Three key reasons. First, to let everyone know that with adequate support, a child with cerebral palsy can achieve a lot. Several people with cerebral palsy are very successful. Don’t kill or abandon the child. There is hope! Get support!

Second, to let everyone know that a person with cerebral palsy is not automatically a dullard. They may look, talk, or walk different but many are just as intelligent, if not more intelligent than others. Enough with the stigma already!

The third reason is to warn the entire public on the dangers of deliveries by untrained persons. Learn from my experience and don’t repeat it. A word, they say, is enough for the wise,” Lade concluded.

“You’re such an inspiration ma’am! We cannot thank you enough,” he said in as the camera came to focus on Lade’s face, ending the discussion.

*********************

A loud gasp went through the lecture hall, and my jaw dropped open. Lade was our very own Mrs Dada! My eyes were as large as saucers in disbelief.

Mrs. Dada walked to the front of the class as the lights came back on. “That was my interview with Mr. Larry. Any questions on cerebral palsy?” she asked, her gap-toothed smile back on her face.

No one said a word. We were dumbstruck. Questions could wait.

*******THE END*******

Additional helpful resources.

  1. A cerebral palsy guide
  2. Let cp kids learn foundation.
  3. Welcome to Benola
  4. Some success stories of people with cerebral palsy: Farida Bedwei, Noluthando Makalima, Divya Arora, Simone Kruger, Ferdinand Maumo
  5. Famous people with cerebral palsy
Support is integral to coping with cerebral palsy

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8 thoughts on “Understanding cerebral palsy and coping with it.”

  1. Thanks Mercy… this is thoughtful and an easy way to relate CP to the parents of affected children.

  2. Michael+Adetola+Adeyemi

    My comment on Cerebral Palsy

    “This is quite informative and educative. Your presentation style is quite magnetic as usual. I pray for more grace in your life to keep sharing important health stories.
    It is interesting to learn that delivering new babies carries such a very high risk. It means that some women who turned down medical advise for a cesarean operation until the situation became critical might be exhibiting their ignorance. Truly, the ignorance can cause an incalculable damage to human life and property.
    There is need to enlighten pregnant women on cerebral palsy”.

    1. Dr. Mercy Folayan

      Thank you sir for your kind comments.
      Indeed delivery is a high-risk process and thats why there is so much jubilation over a safe delivery.
      Will keep sharing such information so that the knowledge gap can be lessened.
      Thank you sir.

  3. Michael+Adetola+Adeyemi

    The story is highly informative as well educative. It has created great awareness in me of the risk a pregnant woman faces if she allows inexperienced “medical practitioners” take charge during her delivery. Furthermore, now I know better that a person with CP is not mentally retarded.

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