Kisarale gave up her job to look after her child

Like any other pregnant woman, Dorothy Kisarale, prayed and hoped that in the end, she would have a successful birth. And, indeed, she had one. On Friday, January 4, 2019, at about 3pm, she gave birth to her second child, a bouncing baby boy at Kampala Hospital, a private health care facility.

Her first born is a girl, Heather Bagaya, now four years old. Kisarale says the birth of her son was an easy one.

 However, shortly after his birth, one of the nurses at the hospital noticed something unusual with the boy’s eyes while administering the polio vaccine.  The baby’s eyes were faintly yellow. The nurse then went on to advise the mother that after getting discharged from the hospital, it was important for her to exclusively breastfeed the boy as well as sun bathe him from time to time.

He was given the name Harvey Rukidi and discharged later. The family was at the time staying at Komamboga, a Kampala City suburb off Gayaza Road. During their first weekend stay at home,  Kisarale realised something was not right with her son.

“I remember on Monday,  January 7, 2019, Harvey [Rukidi] woke up at about 4am. He stayed awake until 11.30am. I found it rather odd because newborns spend most of their time sleeping given my experience from looking after my older child,” Kisarale says.

So, at about 11.30am, she made a phone call to her husband, requesting that he picks her up so that they could take Rukidi to hospital for a checkup. On their way to Kampala City centre, Kisarale realised her son’s head was tilting backwards. It hit her that something was wrong. Their initial plan was to go to International Hospital Kampala (IHK) but the distance seemed farther thus, they opted to go to LifeLink Hospital in Ntinda, a Kampala suburb.

A paediatrician received them and examined Rukidi. Shortly afterwards, she requested for an ambulance. Upon asking what was wrong with her son, Kisarale was told the boy had brain damage and the priority at that time was try to resuscitate him and it was best to do that at Nsambya hospital.  All the concerned parties jumped into the ambulance.

“Inside the ambulance, I noticed Harvey’s eyelashes batting and his lips were trembling. The paediatrician who was accompanying us mentioned that my son was having seizures,” Kisarale says.

The ambulance arrived at Nsambya hospital 30 minutes later.  A team of medical workers received Rukidi and immediately started attending to him. Afterwards, he was placed in an incubator.

“I spent most part of the night watching and praying for him,” the 31-year-old mother of two says.

The following day, Kisarale and her husband, were told it was important that a blood transfusion be done on Rukidi.

“The medical team said they were going to draw out much of his contaminated blood and replace it with fresh blood, a procedure that would save his life,” Kisarale says.

Family members and friends came in and donated the required blood. Kisarale could not donate blood because she had just given birth. On Thursday morning, January 10, a few days after the blood transfusion process, Kisarale noticed an improvement in Rukidi’s condition. His neck, for instance, was not as stiff as it had been before the transfusion.

What was wrong with Rukidi?

Shortly after Rukidi was discharged, Kisarale was advised by another medical officer to consult a paediatric neurologist who treats conditions related to the nervous system in children. When Rukidi made six months, Kisarale spoke to Dr Robert Sebunya, a paediatric neurologist at Nsambya Hospital.

“Dr Sebunya took time to explain to us what was wrong with Harvey [Rukidi]. He told us that at that point the baby had neurological muscle disorders (plus) brain damage which conditions were all sparked off by jaundice (the yellowing of the eyes),” Kisarale says.

However, recently after his second birthday, Kisarale says Dr Sebunya confirmed that Rukidi has dyskinetic cerebral palsy, a condition which affects muscle control and movement.

Quitting work

Rukidi was discharged after two weeks and four days at the hospital. Soon after, his mother made a radical decision to resign from her job as a public relations officer and social media handler at Mukwano Industries. She wanted to focus on her son.

To cope without a job, Kisarale says family members and friends came in to help financially during this difficult time. She gives credit to her former classmates at Gayaza High School (the class of 2003).

“Can you believe that when they learnt about my son’s ordeal, they started collecting money, about Shs1.5 million, and gave it to me every end of month. This started in July 2019,” Kisarale says.

Part of the money was spent on medical bills since Rukidi was always in and out of hospital for different reasons including infections and seizures. Some of the money catered for Rukidi’s medication which Kisarale says cost about Shs360,000 in a month and physiotherapy, a treatment of problems associated with muscles, joints and nerves cost about Shs500,000 monthly. Then, occupational therapy, a treatment that involves incorporating a patient into daily activities cost about Shs350,000. Kisarale still incurs the costs.

Besides her former classmates from Gayaza High School, Kisarale also credits her mother, Victoria Kisarale, and, her best friend, Hannah Nyombi who have both supported her financially and emotionally throughout her son’s ordeal.

Relationship with Rukidi’s father

The mother of two says her son’s condition took a toll on the family. And it is for this reason that Rukidi’s father opted to walk away from the family.

“He probably found everything overwhelming because there were many things happening. Besides, looking after Harvey [Rukuid] constantly needed a lot of money, which we both did not have,” she says, adding, “In the end, my partner opted out.”

Despite not being together, Kisarale says her former partner occasionally continues to support the family.

“Sometimes, he sends us money. I believe he still loves his children but prefers to support them from a distance,” she says.

With her children, she later relocated to Buwaate, approximately 12 kilometres from the city centre. Kisarale believes that if they had undergone intense counselling after learning of Rukidi’s condition, their relationship could have been saved.

After the relationship ended, Kisarale says she suffered a nervous breakdown.

“I cried often and did not eat much. In the end, I lost too much weight,” she says.

 “I also did not love talking about my son. I avoided where he was because the space between us gave me some kind of peace,” she says.

It was such a trying time. But one day all that changed after her best friend, Nyombi, said to her that, “Spiritual wounds are dealt with either by the Holy or evil spirit.”

The statement made Nyombi contemplate the Word of God. She chose the Holy Spirit to deal with her spiritual wounds.

“I started to pray and read my bible often,” she says.

Besides often checking on Kisarale, Nyombi also pushed her friend to start and register Harvey’s Cerebral Palsy Foundation, a non-government organisation (NGO) in March 2020. Their aim is to sensitise communities and other mothers about cerebral palsy as well as offer psychological support to mothers raising children with the condition.

Life today

Rukidi is still constantly in and out of hospital for different health conditions including infections, seizures. He can hear, see and recognise his surroundings. He still has challenges with speech but can say words such as mama (for mother) and jajja (for grandmother). On occasions, he wants to call his sister, he calls her “Hair” instead of “Heather.”

“His speech just needs enhancement,” his mother says.

Because of dyskinetic cerebral palsy Rukidi  occasionally seems to want to reach out to touch something but his body fails him. 

“You find him trying to push his hand forward but then there is this uncontrollable force that is pushing it backwards. In the end, he gets irritated,” Kisarale says.

Rukidi has to be carried around and fed. The mother says he enjoys pumpkin, Irish potatoes, sweet potatoes, and avocado.

Bouncing back

Kisarale secured a job in March 2020. She recently hired two caretakers to help look after her son. She works as a communications and advocacy officer .

This  has taught Kisarale the value of friends and the love of God even amid challenges. Her advice to especially the expectant mothers is that immediately after giving birth, seek the services of a paediatrician.

“If you can, request them to conduct tests on your child in order to ascertain whether they are fine or not. It is important to do this before getting discharged,” she says.

About Rukidi’s condition

Dr Robert Sebunya, a paediatric neurologist at Nsambya Hospital

“Harvey [Rukidi] got jaundice (yellowing of the eyes) shortly after birth. Jaundice can cause brain damage when high levels proceed to affect the baby’s brain, including the part responsible for coordinating muscle movements. With this background in mind, after he recently made two years, we confirmed he had dyskinetic cerebral palsy which affects muscle control and movement. In other words, this type of cerebral palsy he got was because of the high levels of jaundice that affected the part of the brain responsible for coordinating muscle movements. 

The biggest causes of cerebral palsy are poor supply of oxygen when children are born and jaundice. The condition can be managed through medication, physiotherapy and occupational therapy.”