Two-year-old on life support for over a year

SUNDAY VISION

 

By Jeff Lule

 

• For over a year now, two-yearold Francis Kiggundu has been lying in the Intensive Care Unit at Case Hospital in Kampala, fighting for his life.

 

HE lies helplessly on his hospital bed. From his chest, a tube leads to a life support ventilation machine. He cannot breathe on his own. Another tube is connected to his nose. Francis Kiggundu can only move his head.

 

His parents, Edward Kibombo and Betty Nalubyayi and the staff of Case Clinic celebrated his second birthday on February 23. 

 

Unlike other children, Kiggundu celebrated his birthday by just looking on and smiling at those around him.

 

Beside his life support machine is a laptop on which music is played for him. He smiles at familiar sounds and people, and cries in protest when a stranger enters the room.

 

“We now refer to him as the Case Baby, given our close relationship with him,” Tadesse Milka, a nurse, says.

 

Kiggundu has been admitted for 14 months. His parents sleep outside the Intensive Care Unit (ICU). 

 

They and the hospital staff have hope that Kiggundu will, one day, receive a miracle and live a normal life like other children.

 

Problem starts

Like any other young couple, Kiggundu’s parents enthusiastically waited for their first child.

 

“We prepared like (other) parents, hoping to share this moment of having our first child, but here we are,” Kibombo says, holding back tears. 

 

Kiggundu was born prematurely, at sevenand- a-half months, on February 21, 2013 at St. Catherine’s Hospital, Buganda Road.

 

“We took him to Mulago Hospital to the special care unit, where we spent three weeks before being discharged. He was fine,” Kibombo says.

 

Kiggundu was fine up to nine months and had started crawling. But everything changed on December 27 2013, when he developed a high temperature.

 

“I was at work when my wife called me. We rushed him to ABII Clinic in Wandegeya, where he was examined but nothing was found. They gave us medicine and we returned home. The child started playing,” he adds. 

 

Edward Kibombo sharing a light moment with his son Francis in the ICU at Case Hospital. Photo by Abou Kisige

Kobombo notes that on the night of December 29, Kiggundu developed another temperature. In the morning, they realised his neck was inflexible.

 

“We thought he had slept in a bad position, but by January 1, 2014, there had been no change in his condition. We bought an ointment from a pharmacy and started rubbing his neck but all in vain,” Kibombo explains.

 

He says on the night of January 3, the situation worsened. They rushed the child to ABII Clinic again, where they referred them to Imaging Centre at Wandegeya for an X-ray to ascertain the problem.

 

“When we returned to ABII, the doctors sent us to Case Hospital for the interpretation of the images,” he says.

 

Admitted at Case 

“When we got to Case, they looked at the images, gave us treatment and admitted us in the children’s ward,” Kibombo notes.

 

He says at about 9:00am on January 5, Kiggundu developed breathing problems. He was immediately taken to the ICU, where he was put on life support.

 

After six days, Kiggundu recovered and was taken back to the children’s ward for three days. He was breathing normally.

 

Back in the ICU

Kibombo says his son developed the same breathing problem on the day they were to be discharged and was re-admitted to the ICU.

 

“It is at this point that he also got paralysed. When we asked for the cause of the breathing problem, doctors said it was pneumonia,” he adds.

 

After carrying out tests, doctors said Kiggundu had a brain problem, which the parents did not believe given the fact that their son could still recognise them and the other doctors he was already familiar with.

 

Kiggundu spent about three months in the ICU.

 

Kibombo says his son developed the same breathing problem on the day they were to be discharged and was re-admitted to the ICU. Photo by About Kisige

“He lost weight from 8.5kg to 4.5kg. They changed his diet to the fortifi ed Mwana Mugimu foods, which helped him regain weight after three months,” Kibombo says.

 

Special feeding

Kiggundu feeds on special milk called Isomil from South Africa through a tube that goes into his nose.

 

“Eight hundred grammes cost sh100,000 and last for four days. We feed him through a tube because he cannot eat on his own,” Tadesse says.

 

Tumour on the spinal cord 

In November last year, the doctors did Magnetic Resonance Imaging (MRI) to check the status of the brain and spinal cord. They realised he had a tumour on his spine.

 

They carried out another MRI test at Mengo Hospital to prove their findings, which showed the same result.

 

The tumor, doctors say, had affected his muscles, leading to a paralysis and breathing problems.

 

Operation

Kiggundu underwent surgery on February 20.

 

“After the operation, they asked us to give it time, saying he would recover slowly. But he is still on life support,” he says.

 

However, Kibombo says the machine was adjusted from full support, a sign that he is reacting slowly.

 

“His legs and hands are now responding gradually unlike before,” he adds.

 

The only child

Kiggundu is the only child of Kibombo and Nalubyayi, residents of Nansana in Wakiso district. The two met at university and have been together for six years.

 

“Because of what we are going through, we have never thought of having another child. We spend all our time working to get money to treat our son,” he says.

 

Tadesse Milka, a nurse attending to baby Francis. Photo by Abou Kisige

Kibombo and Nalubyayi spend nights in the hospital corridor to check on their son. Every morning, they move to work and check on the child at different intervals.

 

“We only go home to bathe and change clothes in the evening,” he says.

 

Financial constraints

Kibombo says they spent sh18m and got financial constraints.

 

“I sold everything I had to raise the money. The company I was working for closed. Now I am just looking for means of survival. I ask people to give me help for my son,” he adds.

 

The hospital administration also gave them an offer to provide all the medical expertise free of charge.

 

“They promised to let the child use the ventilation until he recovers and also offer medical expertise. Our work is to cater for medicines, food and other costs. But it is not easy without a job,” he adds.

 

Kibombo is grateful to Case Hospital administration for the support towards saving their child. 

 

“All doctors treat Kiggundu as their own son. If it were not these people, Kiggundu would be gone because we no longer have money to meet the medical bill,” he adds.

 

Medical experts

Dr. Elisa Mwaka, an orthopaedic surgeon at Case Hospital, says Kiggundu had a cancer around the spinal cord. 

 

The swelling of the cancer put pressure on the spinal cord for more than a year, which compromised its functions. 

 

As a result, he is unable to breathe on his own since the spinal cord regulates the movement of the diaphragm which aids breathing.

 

He notes that Kiggundu underwent surgery and the large tumour that was compressing the spinal cord was successfully removed. 

 

Kibombo says Francis' mother she is still traumatised by her son’s condition. Photo by Abou Kisige

However, it will take time for the spinal cord to regain its functions since nerves heal slowly.

 

“Right now, we are not sure of the prognosis we do not know how much function he will recover. We are just hoping for the best,” he says.

 

The hospital public relations manager, Nsubuga Tashobya, says the hospital is now raising money to purchase a support machine for Kiggundu, which he can use at home.

 

Billing

Rhoda Kasinda, the hospital’s finance manager, says the cost of treatment for Kiggundu is sh295,049,600, which the parents cannot raise.

 

“We resolved to raise money to get him a support machine to use while at home. People have already started contributing but the money is still very little. We appeal to the public to contribute,” she notes. 

 

She says sh9,894,200 has already been raised as per 2014 records.

 

Kasinda notes that a new machine costs sh150m, while a reconditioned one goes for sh50m.

 

Kiggundu’s mom still traumatised

Betty Nalubwama, Kiggundu’s mother, breaks down when asked to talk about what she is going through since her son was hospitalised.

 

Kibombo, the husband, says she is still traumatised by her son’s condition. She has been going through the situation from the day Kiggundu was put on life support.

 

"Being her first child, she broke down and became weak when our son was plugged into the life support machine using tubes. It was shocking to see our child who was normal like other children get into such a condition," he says.

 

Nalubwama is said to have fallen sick during the same period. 

 

"She went for a checkup, but the doctor found nothing. They told her she was stressed. They counselled her and she started recovering," he adds. 

 

Nalubwama also went to her church — St. Augustine Church in Makindye — where she used to spend most of the time praying and getting counselling. 

 

Kibombo says his wife is affected by the condition of their son, but she is recovering slowly.

 

"At times she is strong, especially when she is out of the hospital but her life changes every time she sees the child. Sometimes she breaks down and becomes weaker," Kibombo notes.

To support Kiggundu, call 0773-261 486 or 0757-216 079 to get more details