TALES OF COURAGE: What my child with cerebral palsy has taught me

Joyce Wanjohi’s four-year-old son Nathan spent the first two weeks of his life in the Intensive Care Unit.

“He has spastic quadriplegia, a type of cerebral palsy. His condition developed due to prolonged labour which resulted in him not receiving enough oxygen to his brain.”

When he was born, Joyce wasn’t allowed to hold him lest she infected him with something.

“I was discharged but had to spend every day at the hospital. For two weeks, he wasn’t moving, wasn’t making any sounds, wasn’t opening his eyes but the doctors assured my husband and I that he was still alive because the machines were beeping. Eventually, he woke up when he was being bathed. He was transferred to the nursery and that’s when he started responding.”

DELAYED MILESTONES
After a month, they we were told that he had delayed milestones. Joyce figured that is all it was and was happy to take him home. However, her husband knew it was more than that. Three months prior to Nate’s birth, he had travelled to the US for work as a camp counsellor.

He was working with CP kids who displayed the same symptoms, but he didn’t know how to process that and break it down to her.

"Four months after his birth, a friend of mine decided to plan an appointment with a doctor to break it down to us. That is when Nate was officially diagnosed with cerebral palsy.

The doctor just kept saying all the things that Nathan would never be able to do. Can you imagine nine months of hopes and dreams for your child crushed in a single moment? After the diagnosis, we realised we now had to figure out how to manage the condition."

LEARNING THE HARD WAY
Joyce says the doctor did not provide them with any guidelines on how to move forward.

“We had to figure out the diet and the feeding schedule. He was prone to sickness. For example he would contract a cold on Monday and by Friday it would be pneumonia. I had to learn the hard way that he required more care than any other normal child."

Their finances were also strained because he had to go for therapy thrice a week. Finding a nanny who could also accommodate Nate and follow instructions for his care meticulously was also a huge challenge for them.

STEM CELL THERAPY
When Nate was 18 months old, they explored stem cell treatment. Stem Cell Therapy (SCT) is the treatment of various disorders, non-serious to life threatening, by using stem cells.

“I researched on the procedure, asked around for parents who had tried the treatment. They recommended it, so with that we felt we should try it out.”

But the procedure never happened.

“The hospital, which was all the way in India, told us that they don’t offer stem cell. In our correspondence prior to the trip, they said that they did. We figured this out on the second day there that we had been duped. There was someone who benefitted from that experience. To make it worse the doctor there told us not to even bother with Nate. He said that the next time Nate got sick not to take him for treatment, but just let him die as he would be a burden if we chose to keep him.”

ONCE BITTEN, TWICE SHY
Joyce did not take chances and when they decided to try out the treatment again, she did enough research and the procedure was done without a hitch in India.

“The treatment has helped him. He is chewing now, he feels more aware, like someone who has woken up. It is recommended that you go back after six months, then after that one year. But it’s straining us financially.”

“If stem cell was brought to Kenya it would be easier but I don’t think that will happen soon, doctors here make money from parents of special needs children. If you have a special needs child you have to go for regular check ups, and you cannot see a GP, you have to see a neurologist. The slightest ailment requires that you buy medicine. There is speech therapy, physiotherapy, occupational therapy, it’s a lifetime thing, and they become your lifetime patients. If stem cell treatment was introduced, it would greatly improve the quality of life of special needs children and reduce the

dependency on doctors.
LESSONS FROM NATE
Having Nate has taught me about the concept of true surrender to God. This is literally a kid who depends on his parents and nanny for everything. He just trusts that everything will be fine without any doubts. He has taught me about letting go.

I have more patience than ever and I have also learnt to pay attention to detail. There is a laughter that tells me he is happy and the other one that he is having a convulsion. I can tell what cough is a sign of a cold or choking and so on. I have also become more prayerful in regards to his caregiver, because he can’t tell me if he is mistreated so I have to trust that he will be in good hands.

As parents because we have a shared experience this has brought us closer. Sometimes one of us gets overwhelmed and we have learned to be strong for each other. This has also taught us to create balance. There is us as parents, as a couple, and as friends to people in our lives.

Finally to all mums out there, it’s not the end of the world, don’t give up. Your kid will keep living and can have a full life.”

FACTS ABOUT CEREBRAL PALSY
According to the Cerebral Palsy Society of Kenya (CPSK), Cerebral palsy (CP) is a physical disability that affects movement and posture. It is an umbrella term that refers to a group of disorders affecting a person’s ability to move.

It is a permanent life-long condition, but generally does not worsen over time. It is due to damage to the developing brain either during pregnancy or shortly after birth.

Cerebral palsy affects people in different ways and can affect body movement, muscle control, muscle coordination, muscle tone, reflex, posture and balance. People who have cerebral palsy may also have visual, learning, hearing, speech, epilepsy and intellectual impairments.

There are four types of CP
Spastic cerebral palsy- People with spastic cerebral palsy often experience exaggerated or jerky movements (hypertonia).They also have awkward reflexes, stiffness in one part of the body, Contractures (permanently tightened muscles or joints) and abnormal gait.

In athetoid cerebral palsy, the main trait is involuntary movement in the face, torso and limbs. Other symptoms include stiff or rigid body, floppiness in the limbs, problems with posture and issues feeding.
Those with ataxic cerebral palsy have issues surrounding voluntary movement. Other symptoms include difficulty speaking, problems with depth perception, shakiness and tremors and spreading feet apart when walking.
There is also mixed cerebral palsy which is very rare but in this case might be a combination of all the above.