What it means to look after a child with cerebral palsy

At four months, Damian Mugonza (nine years now) started crying all the time. “He tried to sit but his neck was feeble and it would fall back. He also developed a breathing problem with wheezing. So, we took him back to Kibuli Hospital. While there, the doctor said he had a brain problem because whenever he developed a cold, it would be severe that he had to be taken to hospital,” Birungi recalls.

The doctor, then unable to identify what the exact brain problem Mugonza had, told his parents to get a second opinion from another hospital, “We then took him to Rubaga hospital. There, the doctors were only able to treat the breathing problem and later referred us to Mulago hospital.”
Her husband on some occasions, escorted Birungi for antenatal visits and before a diagnosis was made for the child, they moved together to the several hospitals since this was their first child.

What was wrong?
The couple was told to do electrocardiogram (ECG) tests to check the extent of the heart or blood vessels damage for the child. At St Catherine Hospital, the report revealed a damaged brain which the doctor assumed he got at birth. He had cerebral palsy.

Birungi says, “The doctor gave us a thorough explanation that our child was going to be disabled for life. It was sad and shocking to us. This was my first child. He was so adorable. I could not believe that he was going to be immobile for life.”

At six months, Mugonza started getting convulsions; he barely slept and cried constantly. A doctor at Mulago hospital recommended Phenobarbital tablets that would prevent seizures. He also needed sleep capsules which Birungi bought at Friecca pharmacy in Wandegeya and each capsule cost Shs2,500.

She says, “The capsule, however, did not work for him. Whenever he tried to sleep, he would get nightmares and scream. Then stay awake. I then went against the instructions of the doctors and gave him a quarter of the Diazepam tablet (used to treat anxiety) in the evening and he was able to sleep for at least about half of the night.”

At this point, the husband started coming home once in a while because Birungi’s whole attention was all on her child. After about three months, he stopped coming home completely.

Resilient mother
When Mugonza made a year, his situation worsened. His breathing became loud that even passersby would hear him. He would grind his teeth and this continued until he was six years old.

Mugonza’s father could not stand the situation. He played the blame game saying, “our child was in that state because of me. He said I was careless and he left me to take care of him.”

Birungi pressed on and she continued taking him for treatment. At two years, Mugonza was started on physical therapy at Mulago hospital every Monday and Thursday.

At first, she was frustrated but when she met other mothers, they shared their experiences and then she became stronger knowing that she was not alone. Some parents talked about how they would hide their children, starve them, abandon them while others waited for them to die.
There were speech and physiotherapists who taught Mugonza and other children with the same condition how to speak, stand, raise the neck, talk, hold, turn and move their bodies. There were about 20 children that came for the therapy.

Since Birungi neither had a job nor support from her spouse, she stopped taking the child to hospital because of the transport costs.
“People did not want to sit with me in the taxi and I resorted to using a motorcycle from home to hospital. This lasted six months and it was overwhelming,” She relates.

Hitting a snag
At that time, a friend told her about Happy Children Uganda, Makindye, a charity which provided food, clothes and physiotherapy for children with neurological disorders. It was relief to Birungi and it was a walkable distance from her home.

This relief, however, was short-lived because the place closed shop after a year. While in Makindye, the neighbours were uncomfortable living with her.

“They stopped their children from coming to my house. They called my child all sorts of names and referred to me as the cursed one,” she recalls.
She then had to shift to another place where her child would be comfortable with the help of a friend who talked to the landlady and paid just one month’s rent. Kansanga-Kiwempe, her current residence is quiet and she has been there for about five years now.
“My landlady is very understanding and there is just one neighbour who returns in the night,” Birungi explains.

Taking care of him
He is a jolly boy. He can hear when you speak to him and respond with a smile or movement of the body. His neck must be kept in an upright position since any tilting causes him to wheeze. Birungi and her son are attached to each other. When Birungi walked me to their house, Mugonza welcomed her back with a smile and his hands made a feeble clap.

About their typical day, the duo wake up by 7.30am and after a shower, she goes to the market but leaves the door open.
“For instance, when I want to go shopping in the market, I tell Mugonza not to cry assuring him that I will return soon. That way, I find him playing by himself. If I do not assure him of my return, he cries uncontrollably,” she says.

Mugonza never cries of hunger because the mother feeds him in intervals. He eats breakfast at 9am, lunch at 1pm and supper at 5pm.
“I cook for him food which is easy to chew such as bananas, Irish potatoes, pumpkin because he has ulcers and difficulty swallowing. I also give him milk in the evening.”

Birungi starts her work at 10am.
“He watches me crochet or sew clothes throughout. He only sleeps after I have slept and that is after 11pm. And, he sleeps as long as myself,” Birungi says.

She used to go to church when the child was younger because they had a wheel chair which friends from St Denis Ssebugwawo Catholic Church in Kansanga had donated, but he outgrew it.

“I now have to carry him on my back but he is heavy, so I choose to stay at home. However, I am glad that sometimes people come here to pray for me, counsel and sometimes contribute to my rent. My family never calls or visits because they think I have bad luck or that I might ask them for money.”
The middle-aged mother is devoted to taking care of her child, as she looks at him as her only family and wants him to be happy. She pays Shs250,000 for rent, uses four diapers a day and each costs Shs 1,200 and uses about Shs 7,000 a day for feeding Mugonza.
“I do not think I will remarry because it might be hard for me to find a man that will love me and my child. The challenge is basically financial; feeding him, buying diapers and paying rent,” she explains amid sobs.

Self-reliance
Taking care of a child with cerebral palsy is challenging. Christine Birungi Ateenyi does not wallow in self-pity but has something to earn her an income.

“I stay at home every day so I have to find something to do in order to sustain myself since in most cases the fathers to children such as mine run away,” Birungi says.

For her livelihood, she started by making shower caps that would be be sold in Juba at Shs10,000 per cap but after the instability, the market collapsed. “The person who used to sell the caps for me in Juba feared to go back. Luckily, I had saved some money which I used to buy a sewing machine.”

Although she did not know how to use the machine, she started by repairing torn clothes and it took her a week to learn the basics of sewing. She now does hand work and crochets purses, baby clothes (0 to 3 months) which range from Shs 10,000 to Shs 40,000.

How children can be helped
Dr Kaddu Mukasa, a neuro physician at Kiruddu General Hospital, says a variety of nondrug therapies can help children with cerebral palsy to enhance functional abilities.

“Such children may need speech and, or physiotherapy for muscle training and exercises may help your child’s strength, flexibility, balance, motor development and mobility,” says Dr Mukasa.

What do statistics say about cerebral palsy in Uganda?
A report by the Lancet global health says that preterm-born children comprise about 40 per cent of the children with cerebral palsy in Uganda.
Dr Mukasa says, “There are no statistics about the number of children that have cerebral palsy in Uganda because parents refuse to take such children to hospital. Many are closed up in houses and the exact numbers are hard to estimate.”