Agony of boy, 3, who has been on oxygen support for 2 years

Walking through the gate the Muemas have called home for two years, Emmanuel Muema sits at the doorway holding a nasal pipe that is connected to an oxygen tank.

He stares curiously at our team as we approach the door. His father, Jonathan Muema, asks him to greet us, and, after a few seconds of hesitation, he fist-bumps us. 

Behind the door, there are two huge black oxygen cylinders that are used as a backup when there is no electricity.

Straight ahead beside the wall unit is an electric oxygen tank that is connected to Emmanuel’s nostrils. His mother, Eunice Muema, is seated on a couch adjacent to the wall unit, feeding their baby girl, five-month-old Blessing.

After a stillbirth and losing an infant at two weeks, Eunice was overjoyed when she became pregnant again. She gave birth to 3.2kg Emmanuel on January 22, 2019, through a caesarean section. However, nine months later their lives changed.

“In November that year, Emmanuel was diagnosed with measles and was admitted at Mbagathi Hospital for three days before being moved to Kenyatta National Hospital where he was in the intensive care unit for 34 days,” says Eunice.

For the three days, he was in ICU, Eunice was at the hospital full-time while her husband Jonathan was doing casual jobs to make ends meet.

“Finally, the doctors said they couldn't keep him at the hospital fearing he might get other infections, so he was discharged but we were told that he would be on oxygen until his lungs fully recovered. By that time, the bill was Sh1.2 million," says Eunice.

Emmanuel is distracted by our equipment and laughs every time he hears the clicking sound of the camera's flash as he is photographed.

Jonathan explains how it took a toll on him when his family was detained at the hospital for lack of funds.

“I tried looking for money everywhere, I even contacted my Member of Parliament who sadly refused to help. Eventually, the bill was cleared by the NHIF (National Hospital Insurance Fund).”

The family lived in Kibra and was advised to move to a different neighbourhood that has a sufficient flow of clean air as their child would be on oxygen for a while.

However, they could not afford to move so for four months, they lived at a friend's house. They slept in her living room, with a couch set aside for the baby.

“For four months we fed Emmanuel using a syringe - he could only take liquid food. My husband and I slept in shifts because the baby had to be monitored 24/7 in case he developed breathing problems,” recalls Eunice.

Medical costs

In August 2019, the family moved to a one-bedroomed house in Kahawa West. Before moving, under the guidance of Dr Adil Waris, a consultant paediatrician/children's chest specialist, a nurse made sure that the house was safe for Emmanuel.

Under the Home Oxygen Programme, the family was provided with an electrical oxygen concentration, a type of medical device used for delivering oxygen to individuals with breathing-related disorders, plus two oxygen cylinders for use when there are power cuts.

According to Jonathan, finances have been their biggest challenge, especially now that he is the sole breadwinner with no steady job and his wife has to be home to monitor Emmanuel.

“Our electricity costs Sh2,000 every two weeks. In case there’s a power outage, I need Sh1,500 to fill the backup cylinders. Emmanuel also requires drugs that help with his breathing, and they cost Sh5,000 a month. The rent is Sh10,000. We have sold almost everything we owned upcountry," says Jonathan.

There was a moment of panic during the interview when the parents noticed Emmanuel’s distress. They immediately checked the concentrator and found that he had unplugged it from the socket, meaning there was no oxygen supply.

“We have to be alert, and monitor him all the time in case he accidentally unplugs the concentrator or removes the nasal pipes,” says Jonathan.