For Huzaiffah Musinguzi and his wife Faridah Muhereza, life does not give them any reason to smile. What is there to smile about when their only child, five-year-old Nashira Kamariza is battling an endless illness and many times in sheer agony.
A top class pupil at Rin Kindergarten in Najjeera 2, Wakiso District, the young girl is at school when I get to meet her. She is busy playing with peers, together causing a bit of ruckus that is only typical of an infantry class.
She seems normal when the other pupils too are sitting on the floor. But soon they get up and she stays put, and that is when you realise she cannot stand.
Kamariza moves by dragging herself on the floor. Her nerves that are numb do not support normal movement; neither do her weak feet. And just when I thought I had completely wrapped your head around her misery, I noticed something about her knees.
They are disjoint. They can easily turn in any direction, causing her unimaginable pain. At some point during our interaction, her left knee bends all the way in and I see her cringe her teeth, closing her eyes as she fights to straighten out her legs. This sends a chill down my spine. It is at that point that her mother, Muhereza says it is okay. That she is used to the pain, which is really sad. It is sad that such a young soul has to live in pain all day long.
This is not just the kind of plight Kamariza came to face later in life, she was born into it. As her mother narrates, the day Kamariza was born in Mbarara hospital, it was clear she had an abnormality.
“There was a hole around her lower back, and you could almost see her inside organs. I remember being terrified and asking the midwife whether my baby would survive. I thought she was going to die shortly after,” Muhereza narrates.
The baby did not die. She lived through the first day, and as the parents still feared for her survival, they wondered what was really wrong with her. Not that the doctors had not named the condition yet, they had. But as Musinguzi confesses, they just did not understand the medical lingo the doctors had used.
“They only told us she had Spina bifida. None of us knew what that was.”
Ambrose Ganshanga, a paediatric neurotherapist says Spina bifida is one of the most common birth defects which occur during pregnancy. This leaves a gap in the spinal column where one or more bones which form the backbone fail to close, normally causing permanent nerve damage in the child.
For Kamariza’s case, however, it is not only the movement that has been impaired. The young girl also faces trouble with her bladder. She needs a catheter to assist in urine excretion, and she also has minimal control when it comes to stool passage. But as Dr Ganshanga explains, these are associated effects for this condition. “The nerve damage results into a range of abnormalities and limited functions of the lower parts of the body of the child, including the bladder function, movement of the lower limbs and positioning of the ankle joint or feet.”
After birth, there was need for surgery to close up the baby’s lower back. But for Musinguzi who works as a barber and unemployed Muhereza, the required Shs10 million was more than they could afford. Lucky for them, their calls to well-wishers had a great response and the baby was able to have an operation at one month.
“My sister, the late Brenda Kansiime helped us raise the money and the baby got an operation at Cure Children’s hospital in Mbale,” Musinguzi says.
But the harsh reality of spinal bifida is that usually, it brings with it another condition known as hydrocephalus. This is informally referred to as “water in the brain,” and as Dr Ganshanga expounds, “The condition happens when the watery fluid known as cerebrospinal fluid is produced continuously inside the ventricles of the brain and flows through its drainage pathways. The blocked drainage pathways cause an increase of pressure within the skull and on the surrounding tissues. As a result the head of the child will enlarge and if this pressure is longstanding, the brain will be damaged as well.”
It is this condition that Kamariza was diagnosed with almost immediately after her first surgery, creating an urgent need for another surgery.
“She was crying and vomiting. Her head had started showing signs of expanding and her eyes were now watery. That is when we were told she had hydrocephalus and had to have another surgery. My late sister again helped us solicit the money from well-wishers and we went back for that surgery that also cost Shs10m,” Musinguzi says.
A need for financial aid
Kamariza later got to have another surgery to separate her feet that were joined to her heels, and further nerve correction on her legs.
But even with all those surgeries, her condition is far from normal. She still has issues with her limb nerves that have rendered her unable to move. Her bladder also does not function, so she needs a catheter and because of the nerve dysfunction, she has no control over stool.
All this brings discomfort, and pain. It also requires lots of money to nurse her. As her father says they spend more than Shs900,000 on their daughter’s crucial needs every month.
“She needs about six pampers a day, and all sorts of medication, most of which is used to support her bladder and to help with her head condition. As a barber, I cannot afford this. So I usually just beg for aid from different mosques and churches. It is tough.”
Following the death of Musinguzi’s sister who used to give substantial nursing aid in the past, the parents now feel all financial avenues are blocked. Yet their daughter’s medical condition is getting worse following her recent diagnosis with hernia.
Now they need a minimum of Shs85 million to give her a fighting chance. This is money they intend to use for Kamariza’s hernia treatment, and a nerve refinement operation on her legs and hands. Soon, she will also need another operation on her head to replace the drainage tube or shunt that must be replaced at different stages as she grows. It is for this reason that they make an appeal to well-wishers to help their baby have another life-line. “We don’t want to lose her, yet we can’t afford the treatment. We need all the help we can get. For a start, we need Shs5m to buy a machine that helps cleanse her intestines to get rid of all the poisonous elements she has accumulated.”
When I finally leave the kindergarten, I keep pondering whether Kamariza will ever lead a normal life as we know it.