Young patients with spinal injuries speak of painful cost

Friday, October 14, 2022, is the day Gandhi Muturi’s life changed completely. He had picked up his cousin’s motorbike and dropped off a client near St Paul’s University in Limuru.

He accidentally crashed the motorbike while riding back home, on the roadside near Muthiga, Kiambu county.

“I left the main road and was descending on one of the minor roads between homesteads,”  Gandhi says.

He recalls feeling heavy afterwards and he couldn’t move or make any sound.  

That evening, Naomi Barasa was in the Nairobi city centre, contemplating whether to head home or catch up with some friends after a laborious day at work. She had just boarded a matatu when she got a call.

“I was waiting for the matatu to get full when someone called me from a new number, informing me of what had happened. He identified himself as John Maina. He said the person involved [in the crash] looked like my son as he had dreadlocks.”  

From the details given, Naomi knew it was his son. Gandhi was in a bad state. “I called Gathangu, a taxi driver who is a friend, to head there and help take my son to the hospital before I find my way there, too,” Naomi said.

Gandhi was rushed to the nearby St Peter's Orthopaedic and Surgical Centre. He had injuries to his head and a broken leg and arm, in addition to cuts to his body.

“If it were not for the intervention of the first caller, I think we would have lost him. It was 30 minutes past seven and it was getting dark, so nobody would have seen him as he was in the bushes,” Naomi said.

An MRI the following day confirmed Gandhi had a severe injury to the spine. After two days, he was transferred to Coptic Hospital on Ngong Road.

'WE SOLD EVERYTHING'

He was in and out of the ICU for two months. “Most of his organs had failed. He was practically in machines. That's how he survived. At one point, he had about nine specialists attending to him,” Naomi said.  

Naomi says since the accident, Gandhi had not made any movement on any part of his body. “Before Christmas, he made some movement with his fingers, it was tears of joy from everyone who had visited him that day. It had not happened before.”

Before his accident, Gandhi had been a photo activist. He used his photography skills to create awareness against extrajudicial killings, advocating housing rights in slum areas.

 He also mobilised resources through art to support the children's cancer centre at Kenyatta National Hospital.

The family has come face to face with the morbidly high cost of spinal injury treatment in Kenya, which could be among the highest in the world.

“The expenses went over the roof. When Gandhi was in ICU, we would spend between Sh70,000 and Sh100,000 a day,” Naomi said. 

They have sold literally everything, but he still needs lifelong care.

According to the National Transport and Safety Authority, there were 21,760 road crashes in 2022, which led to 9,933 serious injuries, and 7,137 people were slightly injured. This is an increase of 1,135 accidents compared to 2021.

But Kenya’s National Spinal Injury Referral Hospital has only 35 beds at the moment, which thousands of patients with broken spines must compete for. 

Most patients must fund treatment in expensive private facilities.

Naomi’s family later transferred Gandhi from Coptic to the Restore Physiotherapy and Rehabilitation Hospital in Karen, Nairobi.

Gandhi celebrated his 27th birthday on March 26 at the rehabilitation hospital.

REHABILITATION SERVICES

Dr Catherine Wambua, the proprietor, practised as a physical therapist in the US for 25 years. She founded the Karen facility in 2015 after realising many Kenyans could not access rehabilitation services. 

Restore Hospital specialises in research and rehabilitation for people with brain injury, spinal cord injury, spine and chronic pain, multiple sclerosis and other orthopaedic conditions.

She explains a spinal injury can either be complete or incomplete. With incomplete, a patient will have some motor (control movement) and sensory (feeling), while with complete, all the sensory and motor functions are lost below the injury.

“After an injury, some fibres can be spared. That’s what makes the difference between the two,” Dr Wambua said. The spine has three main parts, lumbar, thoracic and cervical, and one minor part called the sacral.

Medical terms used to distinguish the site of injury are the cervical spinal nerves (C1 - C8), thoracic spinal nerve (T1-T12), lumbar spinal nerve (L1-L5) and sacral spinal nerves (S1-S5).

“When the lumbar is severely affected, the patient loses function of the legs and has all other functions, like the chest, arms and shoulders, intact. As the injury goes higher, more fibres are affected,” she said.

When it occurs higher at the cervical area (C1-C3), the only fibres remaining help in the movement of the head, and there is no arm or shoulder functionality.

In addition, an injury to the cervical spinal nerves will also lead to a patient having issues with their breathing mechanism because that’s where the control of breathing is. “Most patients will likely be on a ventilator as they cannot expand the lungs by themselves,” Dr Wambua said.

Spinal injury patients may experience anxiety, social isolation and depression. Maximum care is needed and also having regular counselling sessions is important.   

Once one is emotionally and psychologically stable, the next concern is how to live with disability and have a realistic set of expectations for the future.

Rehabilitation programmes, such as the one at Restore Hospital, offer physical therapies with skill-building activities and counselling to provide social and emotional support as well as to increase independence and quality of life.

Injuries to the spinal cord attract a high cost of care as there is no specific treatment for it.

Naomi says friends have been supporting the family. “I don't have the right words to describe what I have seen, and felt, in terms of love, solidarity and support from my friends and family. There are days I would feel like I’m carrying the whole world on my shoulders,” she says.

Dr Wambua says the journey can be long. “Recovery depends on the level and the outcome depends on the severity and how soon you get care.”

LIFE-CHANGING MOMENT

Mark Mungai is a third-year student at the University of Nairobi, pursuing a Bachelor of Arts in Economics and Sociology.

On December 5, 2021, Mark, his brother and their cousin went on a short trip from their home in Wangige to Limuru. Little did he know that journey would change his life.

The only thing Mark remembers is that he was seated at the back of the car and hours later, he woke up at KNH. He said: “I don’t have the exact information on what happened. Both my brother and cousin know the details, but we have never had that conversation.”

“There are pictures and a video from the incident, but I have not had the guts to watch or look at them.”

When he regained consciousness on the evening of the accident, Mark experienced loss of feeling from the abdomen downwards.

“Waking up on Monday, I thought I won’t be here for long and will proceed home. But then I was told before that happens, I was to undergo some surgeries. At this point, no one was telling me what was going on,” Mark said. 

He had broken his neck in the accident and the doctors had to stabilise it with neck implants to provide support.

After the surgery, Mark realised he was not getting any better and any chances of going home were minimal. His parents searched for another hospital to start his rehabilitation.

He ended up at the Restore Hospital in Karen. Mark still hopes he will get better.

His family reacted to his new condition differently. “It was a mess. My Mum, Dad and siblings were disorientated. My mum was like sick, though she wasn't sick; it really affected her,” Mark said. 

“My sister acted strong and my brother was blaming himself. It was hard for him to come and visit me at the hospital. It took long before he did.” 

Catherine Muthoni, Mark’s mother, said: “When you go to the hospital, you don’t expect the person to be badly hurt or injured. But after finding out, it was hard to take.

“There are days I would leave the hospital and he’s not in good condition and wonder if I'll still find him the following day.”

Muthoni closed her business to take care of her son. “For one year now, I had no time to open my clothes business until recently as my son needed my full attention,” she said.

Muthoni and her husband, Mark’s father, visited Mark daily to make sure he was progressing well and got all the medical attention he needed. His elder sister Evelyn Njeri and brother also used to visit and give him breakfast before proceeding to work.

Muthoni has gratitude to the extended family members, the community and the church for being supportive throughout the journey.

“Since I closed my business, I have never lacked money to go visit my son. Our pastor has always visited us and still does today. I’m thankful to everyone who has been there for us,” Muthoni said.

HOME CARE

Mark has been receiving home care after leaving the hospital. The family laments the high cost they incur as everything is expensive.

“I would like to urge the government, if they could chip in with some funds for patients with long-term conditions, to lessen the burden on family members,” Muthoni said.

Faith Wanjiru, a caregiver to Mark, has worked at their home for three months. “Mark is my first quadriplegic patient, and through him, I have been able to learn a lot which I didn't know,” she said.

Some of the costs the family incurs include salary for the caregiver, which is Sh10,000 a month; physiotherapy (Sh800 per session) three times a week, which translates to Sh9,600 a month; and Sh5,000 monthly for adult diapers.

Others are Sh1,500 for Epimax oil, which is used to manage bed sores; Sh20,000 for eight weeks' medication; Sh2,000 for wipes; and about Sh2,000 on fuel per week to attend gym and therapy session. That is a total of Sh50,100 a month.

All these long-term costs, which all spinal cord injury patients face, cannot be covered by the National Health Insurance Fund.

In addition, over time, Mark also changed wheelchairs. He started with a high back, which they bought at Sh24,000, then the normal one at Sh12,000, and finally a motorised wheelchair at Sh150,000.

This excludes the medical bills incurred at KNH for the surgeries and six months spent at the Restore Hospital, which is slightly above Sh1 million. The family also had to redo the house to make it patient-friendly, which enabled Mark to move around in a wheelchair.

Mark resumed online classes in November 2022. “It's tough. I have to use my phone to attend my classes, but it becomes harder because of the mathematics involved, and I can't write at the moment.”

“I try to manage as I currently do two units a semester,” he said. His classmates before the accident graduated last year. 

Mark, now 24 years old, spends his time watching investigative documentaries, hosting friends who come visit him, volunteering as a social media manager and learning how to code.

He says in time, the stream of friends has also reduced. “Being my friend will also come at a cost. I would at times need someone to change my urine bag and change my clothes when I sweat, so I still need a lot of care.”

Currently, he is trying to create awareness surrounding spinal cord injuries, reducing the stigma and discrimination, how to improve access to care and enlighten the public on how to prevent severe injuries during an accident.

He's doing this by posting on his social media and also selling T-shirts with different messages relating to spinal cord injury.

“When accidents happen, medics should be the first people to attend to victims. Most Kenyans have no knowledge of first aid and how to handle victims after an accident. I think my injury would not have been severe if I received proper care from the beginning,” Mark said.