What you need to know:
- When his daughter was diagnosed with cerebral palsy, some advised Patrick Karubiu to abandon his wife and child
When Patrick Karubiu received news from his girlfriend that she was pregnant, four years ago, he was ecstatic. He was 27 years, and had a well-paying job at a bank and therefore felt ready to settle down and start a family.
It was a smooth pregnancy for Susan Kuria, and so was the birth. Their daughter, Princess Gathoni, weighed a healthy 2.7kg. As Patrick held his first child in his arms that day, he knew that his life would never be the same again.
“The love I felt for her was overwhelming. I was now a father, and I was aware of the huge responsibility that comes along with this title. I committed to taking care of my daughter and provide her with the best in life,” he remembers.
Three days after being discharged from hospital, the couple’s joy however turned into worry when they noticed something not quite right with Princess.
“When I offered her my breast, she would not suckle. She stopped crying or making any movements and would just lie still. Her urine was a strong yellow, her eyes started yellowing and so did her body,” says Susan.
At birth, Princess had scored a 10/10 Apgar score, the first test given to a new-born, to evaluate his physical condition and to determine whether there’s immediate need for emergency care.
This development therefore deeply worried the young couple. They immediately took Princess back to hospital, and after a series of tests, they were informed that their daughter was suffering from a condition known as jaundice.
“They told us that jaundice was common in new-borns, but that hers was severe,” says Patrick.
For the two weeks that Princess was admitted at Kenyatta National Hospital with her mother, Patrick visited them daily.
“I would wake up early in the morning, prepare breakfast for Susan, then take a matatu from our Kariobangi South home to KNH. I would then stay with them for a few hours then leave for my mother-in-law’s place in Dandora to collect Susan’s lunch and dinner. I would then rush back to KNH and stay with them until evening.” He adds.
When Princess got better and was ready for discharge two weeks later, the doctor warned them that she would probably have impaired sight and hearing.
“Despite the doctor’s words, we nevertheless hoped that she would completely recover and go on to live a normal life,” remembers Patrick.
Once home, the couple would watch over their daughter, with Susan managing to exclusively breastfeed her for the first six months. However, during a routine well-baby clinic at six months, the nurses expressed some concern about Princess’s health.
“They told me she was not achieving her required developmental milestones. At six months, her head was still floppy as her neck was unable to support it. She was also unable to sit up and showed no interest in attempting to crawl. They also asked me if I had noticed that she was not responding to any sounds,” remembers Susan.
The nurses advised a hearing test.
“The tests confirmed that Princess had profound deafness. Further testes also revealed that she was suffering from cerebral palsy,” remembers Patrick.
A second opinion confirmed the same diagnosis. According to doctors, the severe jaundice Princess had suffered could have caused permanent brain damage.
“The news hit me hard. She was my first born, and raising a disabled child is not something I had ever imagined. I was certainly not prepared for it,” remembers Patrick.
He talks of the feelings he had when he discovered his daughter would need special care for the rest of her life.
“I felt a tinge of disappointment because I knew she would not be the independent, successful woman I had envisioned. I even wondered whether she would survive childhood in the first place, and worried about the huge responsibility that lay ahead, wondering if I would be able to pull through.”
Despite these fears, what he knew for certain is that he would always be there for his daughter. The first step he took was take her for occupational therapy at Kenyatta National Hospital.
But Patrick would soon be faced with what must be every man’s worst nightmare – losing his job. Princess was just a year old then.
“It became difficult for us to get by. My wife was a stay-at-home mom since taking care of Princess was too demanding, and we had been unable to get a house help since they were asking for too much, due to our daughter’s condition.
Exploring all options, Patrick came across a hospital in Mombasa that offered free occupational therapy for children with various disabilities, including cerebral palsy.
“My daughter had stopped going for therapy at KNH because I could not afford the related costs and was yet to get a job, I took the risk of moving my family to Mombasa,”
Patrick then rented a single room close to the hospital, and while his wife and daughter spent the day in hospital, he hawked tissue paper around town.
Soon after their arrival in Mombasa however, Susan fell ill with malaria and was admitted in hospital.
“Those two weeks were tough - I would cook for Princess, feed her, bath her, and take her for therapy. At the same time, I would prepare breakfast, lunch and dinner for Susan then take them to her in the hospital.
At about 6pm, I would go to hawk my tissue paper, leaving Princess under the care of a kind neighbour - I would return home at about 9pm.”
But just like her mother, the Coastal weather did not seem to favour Princess, for she also got malaria soon after and was admitted in hospital for two weeks. But even after that, she would constantly get sick, forcing Patrick to rethink his decision about settling there.
“After a thorough analysis, I realised that all the profit I was making was going into Princess’s medical bills. After staying in Mombasa for a year-and-a-half, I decided to move my family back to Nairobi, and rented a single room in Dandora, since that is what I could afford.”
Today, Patrick, a diploma graduate in information technology, sells second-hand clothes to take care of his family.
At four years old, Princess cannot feed herself, talk, walk and still uses a potty. When he is not working, Patrick spends his time at home, teaching Princess new skills playing with her, helping her try to talk, preparing her favourite meals and feeding her.
“It is very involving, taking care of Princess, so I help my wife as much as I can. Besides, we have an eleven-month-old boy, Prince, who needs constant care as well.”
In January next year, Princess will join a special school in their Dandora neighbourhood, which they hope will have a positive impact on her.
Looking back at his life, Patrick says that his four-year experience raising a child with special needs has taught him invaluable life lessons. For starters, he discovered, to his dismay, the negativity surrounding men who make the decision to care for a disabled child.
“Many people do not understand why, as a man, I am so dedicated to my special child and her mother. I have lost count of the number of people who have repeatedly ‘advised’ me to leave Susan. We were not married yet when we got Princess, and I was a young, upwardly mobile man with a good job. I was shocked when some relatives and close friends told me to leave Susan and ‘her problems’ and find a better woman with whom I could start my life afresh. Some relatives openly told me that our lineage does not produce ‘bad seeds’, meaning children with disabilities, and so I should abandon Susan and “her” child. They advised me to quickly leave her before she got pregnant again,” he says.
Despite the discouragement, Patrick remained unmoved, and he in fact went on to formalise his union to Susan in church this year.
“I had dated Susan for two years before she got pregnant with Princess. Back then, I had made the decision that she was going to be my wife, so having a child with disability did not change my mind about that. I have never considered leaving her - why would I?”
Men, he says, are the worst detractors.
“They jeer at me, telling me that my wife must have bewitched me. They tell me that I am poor because of my decision to stay with a disabled child. It is true that raising a child with special needs is expensive, and I most likely would have been doing better financially had I taken off when she was born, but this is my child, and I will not abandon her. I will give her the best that I can, for that is what I vowed to do the first day I held her in my arms. Nothing has changed.”
A man, he says, should be the pillar that supports his wife and children, fulfilling their emotional, physical, psychological and financial needs.
On the other hand, some of Susan’s friends and relatives offer her ‘interesting’ advice.
“They say it is hard for a man to stay with a woman who has a disabled child. Because of this, they ‘advise’ me to hold on to my husband no matter what, that even if he abuses me or beats me up, I should never leave my marriage because I am lucky he has stayed with me.”
One of the greatest challenges Patrick has encountered so far is finding other fathers who openly talk about their experiences raising children with disability.
“I have found that most parents who readily talk about their disabled children are women. I wish more fathers can do the same,” he says.
Such a support group, Patrick believes, would be a source of encouragement, and an invaluable forum to exchange ideas and helpful information about raising their children better.
“It would be good to connect with other fathers out there who have children with disabilities, so that we can all learn from each other.”
Are you such a father? Email Patrick on [email protected]