Brain damage: The baby with a sh200m problem

PIC: Abdul-Rahman Alfa Lusiba's life is in danger and requires surgery

HEALTH

At one year and eight months, Abdul-Rahman Alfa Lusiba was a healthy baby, enjoying all the love of his parents. He is the first-born of Vision Group employee, Mahd Jamada Lusiba, who works with Bukedde TV. 

But one evening towards the end of June this year, baby Lusiba's mother, Eryuba Caroline Leah, realized that her child's health status had changed suddenly.

He had developed a fever and had become weak and lost appetite.

She immediately made a phone call to the father, who had left home in the morning for his routine work.

He instead suggested that the baby be taken to Rubaga Hospital, where they used to take him whenever he fell sick. Little did they know that this would be the beginning of a serious struggle to save their child's life.

At the time, Lusiba was diagnosed with fever and body infection, as per the doctor's findings. Days later, his condition deteriorated and he became unconscious.

Lusiba was taken back to the hospital a week later and this time, he had developed other serious complications -- he was too weak and doctors immediately put him on life support (oxygen) machines.

Doctors later revealed to the parents that Lusiba was suffering from meningitis and after eight days, they decided to refer him to Mulago National Referral Hospital for specialised treatment.

He was admitted in the Intensive Care Unit for one week and later admitted in Ward C.

The baby responded to treatment, which gave his parents some hope.
However, when doctors discharged him, they refused to return home, saying he was still unwell and had signs that there was something fundamentally wrong.

The doctors had realised that there was nothing further they could do, apart from suggesting counseling for the parents to learn how to cope with a baby in such a state.

He had lost all his senses, and could no longer walk, talk or hear. Later, friends advised the parents to look for further treatment elsewhere.

They approached several specialised doctors until they were connected to the NeuroGen, Brain and Spine Institute, a center for stem cell therapy and neurorehabilitation in India. They were asked to send all the medical forms for verification.

Father and son during happier times, before little Lusiba's health took a turn for the worst

Doctor Nandini Gokulchandran MD, a consultant on regenerative medicine, who is also the institute's deputy director and head of medical services and clinical research, later, in his recommendation, stated that the baby was suffering from Post-Meningoencephalitis, with Quadriplegia and cortical blindness.

"The child has severe brain damage and is not likely to recover on its own," he wrote in a letter.

He recommended that the baby should undergo Neuro Regenerative Rehabilitation Therapy (NRRT), which he said can assist in recovery of the patient.

The doctor said the treatment protocol involves a seven-day hospital stay, during which he would be extensively evaluated clinically, and then be required to return for treatment every six months for the next two years.

"This is followed by a Bone Marrow Aspiration, from which subsequently the mononuclear cells will be isolated. These are hematopoietic mononuclear cells which are injected intrathecally through a lumbar puncture.

"This is followed by four  days of intensive physiotherapy, occupational therapy, speech therapy, counseling and other medical treatment as required," the letter states.

The doctor explained that the above therapy is being used for treatment of various brain/spinal cord/muscular disorders and injuries.

"It has been seen to help facilitate repair of the nervous system as well as enable improvement functional ability. Currently, this is not a cure for cerebral palsy/other brain injuries, but more an attempt to help repair the brain, and strengthen the neuronal connections."

According to the consultant, from their experience of treating over 7,000 cases of various incurable neurological disorder, including severe brain damage, they have found that a combination of stem cell therapy, along with holistic neuro-rehabilitation, has shown improvements in terms of reduction in spasticity, achievement of developmental milestones, movement, independence & function, with over 90 percent success rate.

"The cost of the therapy is $48,000 [about sh180,000] for suite room accommodation for four times in the next two years. The cost for an extended stay of rehabilitation will be approximately $5000 (about sh19m). This cost does not include any medications or assistive devices that may be advised at discharge," the letter states.

Unable to find the money, Lusiba has been appealing to friends for assistance. Bukedde TV, where he works, has embarked on a campaign to raise the money, approaching a number of friends and well-wishers for assistance.

He said he had so far collected sh15m and was hopeful that he would find more contributions in the shortest time possible.

Anyone with assistance can deposit their monetary contribution on dfcu bank account 01171153933295, which is in the names of Lusiba Mahd Jamada.