A tale of raising a special needs child

The first thing you will notice about Mary Tusiime is the forlorn look in her eyes. It is like a great sadness settled into her soul and has just refused to let go; instead, it makes its presence known through her large white eyes. The next thing you will notice about the 45-year-old woman is the love she has for her only child. Wincing from the pain in her lower abdomen (she has huge fibroids) she walks quickly, trying to find someone to lift her daughter out of the ambulance.
They are just returning from a hospital visit. Although the girl, Josephine Nakandi, is 19 years old, she cannot walk. There is nothing she can do for herself, except smile and drag herself on the floor.
Thirteen years ago, Tusiime and her daughter were living in Nyakatokye Village in Ibanda District, when Nakandi, then six years old began getting on-and-off headaches. They were living with Tusiime’s aunt after Nakandi’s father abandoned them. “She was a normal child. However, we were both living with HIV/Aids and she was taking (Antiretroviral Drugs) ARVs. When her headaches did not respond to medication, I took her to Mbarara Regional Refferal Hospital for a checkup. The doctors told me she might be suffering from meningitis.”

Saved by Good Samaritans
Two days after being admitted, the child began getting siezures and it was decided that a CT Scan was needed. However, the hospital did not have the equipment. “We had to travel to Mulago National Refferal Hospital but I had no money. I had left home with only the dress I was wearing. I was barefooted. The first bus rejected us; the driver of the second bus transported us free-of-charge and even gave me money to transport us to Mulago. We were admitted in the Acute Ward.”
At Mulago, Tusiime was informed that the CT Scan would cost Shs150,000, a huge amount in 2005. Dejected, she picked up the soiled bed sheets of her child and went outside to wash them. By this time, the child was in a coma. As she was washing the clothes, she saw one of the doctors who had treated her daughter in Mbarara Hospital passing by.
“I approached Dr Musiime, showed him the girl and explained my situation. He came back after a few hours and told me Joint Clinical Research Centre (JCRC) had accepted to pay for the CT Scan. Two days later, we took the child to Kampala Imaging Centre. The scan confirmed that she had meningitis.”
Tusiime and her daughter were admitted in Mulago for a year – a year of deprivation. She was supposed to feed her daughter milk through a tube – she did not have the money to buy the milk. “Some of my neighbours in the ward and some nurses gave me milk and soap to wash her clothes. One doctor, Dr Mwesigye, gave me pampers to use on her. I had never seen them before and he had to explain what they were. He also offered me the plate of food he was entitled to everyday.”
Dr Mwesigye went further. Deciding that the support system in Mulago hospital was not good, he worked hard to ensure that they were referred to JCRC. Unfortunately, he died in an accident. However, by the time he died, the referral letter had been written.
At JCRC, Tusiime met two people who have been her constant support system over the years, Dr Hilda Kizito and Ms Asia Namusoke Mbajja, a counselor. “At first, I was skeptical about dealing with these women. I had been unfairly treated by some female nurses in Mulago and I did not want to deal with female medical personnel.”
On her first day, Mbajja took up a collection among the nurses which amounted to Shs40,000 to feed Tusiime and her child, while Dr Kizito gave her Shs10,000 to buy milk to feed the child.

Their life now
Fast forward and it has been 12 years since Nakandi contracted meningitis. Although they still go to JCRC for treatment, they are no longer admitted there. Tusiime now rents two rooms in Kyengera, a township south of the city centre. As the sole caretaker of her daughter, she has to carry her around the house, wash her soiled undergarments, and feed her. Nakandi now weighs 60 kilogrammes, which is quite heavy for Tusiime’s small frame.
“Renting has been a challenge. Because my daughter soils herself, the other tenants quarrel that she will make their children sick. Since taking care of Nakandi is a fulltime job, I am not gainfully employed and getting the monthly rent is a struggle. Hajat (Mbajja) pays my rent (Shs120,000) but she also has her children to look after. So, sometimes the rent comes late.”
Although she used to eat any type of food, now Nakandi eats only matooke, with beef or chicken. Sometimes, she eats rice. For a woman who does not work, the cost of buying these types of food daily is very expensive for Tusiime. When Nakandi is given any other type of food or plain water she kicks the plate or cup away. When she is annoyed, she gets terrible siezures. Currently, on top of taking Second-Line ARVs, she is also on siezure medication.
A few years ago, when Nakandi got a siezure attack, her mother summoned a bodaboda to take them to the hospital. While on the bodaboda, the siezures worsened and they fell off. Nakandi landed on Tusiime’s chest. Since that incident, they only wait until an ambulance is available to transport them to JCRC.
It was later discovered that because of that fall, Tusiime developed a blood clot in her chest. Now, she is on medication to dissolve the clot so she cannot have the urgently needed surgery for her fibroids. Tusiime is also suffering from high blood pressure, asthma, and is on ARVs.
“Besides using pampers daily, Nakandi now menstruates so I also have to buy sanitary pads. But, I do not always have the money for pampers and sanitary pads, so I have to wash her soiled clothes every day.” It is human to want to give up, and twice, Tusiime bought poison and wanted to kill herself. She credits Mbajja for counselling her and talking her out of the scheme. “Sometimes, she takes me to functions, just to keep my thoughts off life for a while. Recently, she did something no one had ever done for me. She made a birthday party for me.”
Nakandi’s father is now dead, but his family does not want to have anything to do with her. They only provided a space for her on the family burial grounds in the event of her death.

A call for help
Tusiime would love to start a business to sell sandals and shoes in front of her house. This kind of business will ensure that she does not lose her stock whenever she has to spend days in hospital with her daughter.
“With my illnesses and the blood clot in my chest, my daughter is too heavy for me to carry nowadays. A wheelchair would make it much more easier for me to move her around.”

ALL ABOUT MENINGOCOCCAL MENINGITIS

Meningococcal meningitis is a bacterial form of meningitis, a serious infection of the meninges that affects the brain membrane. It can cause severe brain damage and is fatal in 50% of cases if untreated. Several different bacteria can cause meningitis. Neisseria meningitidis is the one with the potential to cause large epidemics. There are 12 serogroups of N. meningitidis that have been identified, 6 of which (A, B, C, W, X and Y) can cause epidemics. Geographic distribution and epidemic potential differ according to serogroup.

Transmission
The bacteria are transmitted from person-to-person through droplets of respiratory or throat secretions from carriers. Close and prolonged contact – such as kissing, sneezing or coughing on someone, or living in close quarters (such as a dormitory, sharing eating or drinking utensils) with an infected person (a carrier) – facilitates the spread of the disease. The average incubation period is 4 days, but can range between 2 and 10 days.
Neisseria meningitidis only infects humans; there is no animal reservoir. The bacteria can be carried in the throat and sometimes, for reasons not fully understood, can overwhelm the body’s defenses allowing infection to spread through the bloodstream to the brain. It is believed that 10 per cent to 20 per cent of the population carries Neisseria meningitidis in their throat at any given time. However, the carriage rate may be higher in epidemic situations.

Symptoms
The most common symptoms are a stiff neck, high fever, sensitivity to light, confusion, headaches and vomiting. Even when the disease is diagnosed early and adequate treatment is started, 5 per cent to 10 per cent of patients die, typically within 24 to 48 hours after the onset of symptoms. Bacterial meningitis may result in brain damage, hearing loss or a learning disability in 10 per cent to 20 per cent of survivors. A less common but even more severe (often fatal) form of meningococcal disease is meningococcal septicaemia, which is characterized by a haemorrhagic rash and rapid circulatory collapse.

Diagnosis
Initial diagnosis of meningococcal meningitis can be made by clinical examination followed by a lumbar puncture showing a purulent spinal fluid. The bacteria can sometimes be seen in microscopic examinations of the spinal fluid. The diagnosis is supported or confirmed by growing the bacteria from specimens of spinal fluid or blood, by agglutination tests or by polymerase chain reaction (PCR). The identification of the serogroups and susceptibility testing to antibiotics are important to define control measures.

Treatment
Meningococcal disease is potentially fatal and should always be viewed as a medical emergency. Admission to a hospital or health centre is necessary, although isolation of the patient is not necessary. Appropriate antibiotic treatment must be started as soon as possible, ideally after the lumbar puncture has been carried out if such a puncture can be performed immediately. If treatment is started prior to the lumbar puncture it may be difficult to grow the bacteria from the spinal fluid and confirm the diagnosis.

Outbreak trends
Meningococcal meningitis occurs in small clusters throughout the world with seasonal variation and accounts for a variable proportion of epidemic bacterial meningitis. The largest burden of meningococcal disease occurs in an area of sub-Saharan Africa known as the meningitis belt, which stretches from Senegal in the west to Ethiopia in the east. During the dry season between December to June, dust winds, cold nights and upper respiratory tract infections combine to damage the nasopharyngeal mucosa, increasing the risk of meningococcal disease. At the same time, transmission of N. meningitidis may be facilitated by overcrowded housing and by large population displacements at the regional level due to pilgrimages and traditional markets. This combination of factors explains the large epidemics which occur during the dry season in the meningitis belt.

Source: World Health Organisation (WHO)