Monday June 9 2014

How sickle cell anaemia robbed twin girls of their tender years

Patrick and Patricia Bwire feed the twins.

Patrick and Patricia Bwire (above) feed the twins. When the parents go to work, the two sicklers are left home alone. Extreme right is a picture of what the girls looked like at the age of two before they got sick. On the left hand side is Pauline Rofina Adong and on the right is Regina Petronila Apio. PHOTOs by ABUBAKER LUBOWA. 


The sound of compressed tiny cries spreads across one of the four walled rooms in the house owned by Patrick Bwire and his wife Juliet Patricia Bwire located in Namugongo, a township situated on the outskirts of Kampala.

Patricia sits on the bed placed strategically at the far back end of the room, feeding a child resting her head on her laps with brown porridge using a spoon that she scoops from a green cup.

From time to time, she keeps calling out her name, Rofina, in a sweet and affectionate manner. Obviously from her actions, it becomes clear that Patricia is tending to her daughter. On another bed placed on the right side of the same room sits a young girl who seems to be in her teens, feeding another one on the same content that Rofina is having.

The girl being fed is Regina and the one doing the feeding is Claire Faustina Nasirumbi, aged 14. The two are sisters.
You cannot miss the striking resemblance between the two girls Patricia and Nasirumbi are feeding after taking a closer look at them. “Do not get puzzled. The girls we are feeding are twins,” Patricia says.

Even as she replies very calmly, it is hard to imagine the kind of pain and suffering that she and her husband have gone through for the past years looking after these twins.
Just as they were beginning to enjoy their early childhood years, both Rofina Pauline Adong and Regina Petronila Apio, aged 10, were paralysed after getting a stroke caused by sickle cell anaemia. The first one to fall sick was Adong, who was only two years old at the time, and Apio followed when she was four years old.

History of the twins’ illnesses
Patricia recalls the day she first noticed Adong’s strange behaviour. “It was during the morning hours when I suddenly heard a cry from her bedroom. When I got there, I found her lying still on the bed. After I touched her body, I realised that the right leg and arm were stiff,” she says as tears gather in her brown eyes.

In a panic stricken state, she quickly took her to Zia Angelina Health Centre which is located within Namugongo trading centre.

A doctor who attended to Adong that day prescribed a cream to help relax her joints but when her condition did not improve a week later, the Bwires decided to visit a doctor at Nsambya hospital who later referred them to Mulago hospital.
At this stage, Adong’s left leg and arm had also stiffened. She had also completely lost her speech.

It was only after tests were carried out that it was confirmed that Adong was suffering from sickle cell anaemia, which had made her get a stroke that resulted into paralysis of all her limbs.

Probably because of the pain and discomfort that she felt, Adong cried throughout the night. This in the end would make it very difficult for the rest of the people in the house to sleep. The family spent a lot of money on getting her the best treatment with the hope that she would finally get better. Adong’s condition, however, just kept deteriorating.

As if this cross was not already heavy for the parents to carry, when the other twin, Apio, was four years, her limbs also started stiffening and eventually she lost her speech too. It was also confirmed that she had sickle cell anaemia after tests were done at Mulago hospital.

Seeking help
Since the couple needed more finances to take care of both girls, they visited Daily Monitor offices and requested for some sort of publicity regarding their daughters’ condition.
“We wanted a story written appealing to members of the public to give us any kind of monetary assistance to enable us take both of them for medical attention,” Patrick says.

Their request was granted and on May 10, 2012, a compassion article titled Eight-year-old twins battling Paralysis appeared in the Daily Monitor newspaper and the response from members of the general public was overwhelming. “Different individuals and organisations offered money, food and toiletries for the twins,” Patricia says.

Comprehensive Rehabilitation Services for Uganda (CORSU) also offered to give the twins free physiotherapy for six months. CORSU, a private non-profit and non-government organisation that mainly focuses on physical and visual impairment in children among other services provides specialised medical rehabilitation care, orthopaedic and plastic surgery.

How the parents cope
It has been almost two years now since the twins were offered assistance, but the girls’ progress has been slow in coming.
“Adong and Apio have not improved very much. Their limbs are still very stiff and they cannot talk,” their father says.
It is because of the twins’ inability to move their limbs that their parents have to carry them almost every other time.

“We have to lift them to and from their beds when they are going to bathe, eat from the living room and even up to the stage whenever we are going to use a taxi to take them to the hospital for medical check-ups. We do not own a personal car,” says Patrick while adding, “They get heavier each day but then we have nothing to do.”

Adong weighs 29kgs while Apio weighs 31kgs. Initially, the parents would use baby strollers for carrying the twins but stopped after they outgrew them about two years ago.

Feeding the twins is also another challenge because they only feed on mashed foods such as Irish potatoes and matooke (bananas) because of their inability to chew. We also always have to observe the best hygiene during the time of preparation because any of kind of contamination can easily make them get an infection, Patricia says.

The Bwires originally had a housemaid who helped in looking after the twins but they had to painfully let her go last year because they could not afford to pay for her services. The situation is a lot harder now without the extra help.

During school time, Nasirumbi and her other four older siblings are away from home, therefore the Bwires are often left with the responsibility of nurturing the twins. “We have to wake up very early every morning at about 5am. After preparing ourselves, we bathe and feed them before running off for work at 7am,” Patricia says.

She adds, “We leave the twins by themselves and have to keep running back home in between breaks to check on them.”
Sometimes they find the twins crying, when they have soiled their clothes or fallen off their beds.

“At times after seeing them in any of the states, I cry and feel like not going back to teach but then, I have no other option,” says Patricia. “I just take care of the problem at hand and then head back to work,” she says.

The couple are both teachers but in different schools. Patricia teaches at Police Children School in Ntinda while her husband is at St Jude Ggaaza Primary School in Mukono.

Patrick says what hurts him the most is that the twins’ disability has deterred him from taking them to school. “They are not as lucky as other children who can walk, run, write or talk. Everything has to be done for them instead,” Patrick says with teary eyes.

Despite of what they are facing at the moment, the Bwires have not given up. Not yet. They are still anticipating for a miracle that will see their twins walk and talk again.

What you need to know about sickle cell anaemi

Here are things leading physicians in the field say you should know about the disease.
1. People are born with sickle cell anaemia; it does not develop in adulthood, and it is not contagious. Sickle cell anaemia is a genetic disorder that is passed down from parent to child. To have the disease, both parents must carry what is known as the sickle cell trait. This means there there is a 25 per cent chance that their child will have sickle cell anaemia.

2. Sickle cell anaemia is chronic but treatable and is not a death sentence. Twenty years ago, children with sickle cell anaemia rarely lived to become adults. Today, the outlook for patients with the disease has improved significantly. Thanks to new treatments and therapies, many people with the disease are now living into their 40s and 50s.

3. Sickle cell anaemia affects people of many different races. It is often thought of as a disease affecting Blacks, and a majority of patients — researchers estimate 60 to 80 per cent — are Black, but other races are affected. People of Indian, Middle Eastern, Hispanic and Mediterranean heritage are also commonly affected.

4. Patients with sickle cell anaemia require comprehensive care. It is a chronic illness that affects many systems in the body, it is essential that children and adults have a system of care that includes primary care physicians, hematologists, paediatricians and social workers.