Trials of mother raising a sickler child

Monica Nakibuuka Amooti and her son Moses Kyazze. He has suffered two strokes and has stopped going to school since. PhotoS by Beatrice Nakibuuka.

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Perseverance. Since Moses Kyazze was born, his mother has never had it easy. From being abandoned by the father to continous health attacks, the young man had to abandon school. In the same vein, the mother abandoned her job to care for him. She tells Beatrice Nakibuuka their story.

His brain is very normal and he laughs when there is something funny on TV. He recognizes his friends because he would go to school but from the stroke Moses Kyazze suffered, he chokes even on his own saliva.
In a well-lit room with a meshed window, I find Moses laying on his back. When the mother calls his name to introduce me, he responds with a smile and later a hearty laugh. There are stocks of medicine for him on something that looks like a rack near his head. The feeding tubes lay there in containers and a backpack at the extreme end of his bed.
His mother calls it the ‘emergency bag’, packed with bed sheets, his gowns and some of her clothes. “Anytime Moses can get an emergency. I do not want to take a lot of time packing because we have to rush to hospital,” she remarks.

How it started
Monica Nakibuuka Amooti, his mother, used to work, but not anymore, she has given up everything to stand by her son, anytime he may need her.
“I have failed to find someone that can take care of him yet I need to buy him medicine. I had a friend that had learnt how to feed him but only through the nasogastric tube. Now that he has a feeding button on the stomach, it is even harder,” she says.
Moses first fell sick at eight months in May 2008. He had a high temperature and when he was given chloroquine and paracetamol, he did not respond to the treatment. Instead, he started vomiting. The vomiting only stopped after an intravenous therapy.
“That night, when we got home, he even got worse,” she recalls.
He improved but two days later, he was sick, again, finding it hard to breathe.
When the doctor carried out more tests, they realised his blood levels were so low that he needed an immediate transfusion. Two weeks after, he got sick again and did not get better until the transfusion.
“The expenses for his treatment were high so I applied for any kind of job at Gwatiro Health Centre, Bweyogerere to be close to the doctors. I was assigned to be a receptionist and was able to get special treatment for him since I was a staff.”
One of the doctors at Gwatiro suspected that Moses might have a liver problem, kidney disease or sickle cell. Amooti was then told to go to Mengo Hospital, where she would get the results in 48 hours. At this time, Moses was already a year old.
Results confirmed he had sickle cells and the doctor explained to Amooti the dos and don’ts of sickle cell. He had to take folic acid, plenty of fluids, had to be away from coldness and had to manage any other symptom as soon as possible.
Moses’ father has never been a part of the journey, in fact, when he was told, he simply said: “We do not have such diseases in our family.”
That was the last they heard from him.
Since then, Moses has been in and out of hospital.

Starting school
Amooti was afraid of sending Moses out in the cold every morning and thus, waited to enroll him into school.
His academic journey began when he was four years old. She was also discouraged by people that often cited examples of children with sickle cell that died before they made four years.
“When I finally took him to school, I gave the head teacher many instructions and fortunately, she understood since she too had a child that was a sickler.”
At five, Moses suffered a stroke and was rushed to Mulago Hospital sickle cell ward.
“We had not monitored the hemoglobin levels, so he partially lost his speech and could not control the right leg and hand. He would limp so I was advised to take him for physiotherapy which helped him regain his speech,” Amooti recalls.
He was very bright in class, he had been in preprimary for one year. However, after the stroke, he forgot everything that he had studied in the previous classes. His teachers had insisted he repeats preprimary but his mother refused.
“With time, he was able to remember somethings. But was not able to write; teachers would help him do oral exams which he would pass very well,” she says.

No more school
One day after school, when he was in Primary Two, he developed flu and cough. He was given treatment but the bacterial infection did not clear, so he started convulsing.
She says, “I rushed him to Mulago and was in the intensive care unit (ICU) for three weeks. For a week, he did not open his eyes. The ICU was very traumatising. Every day, they wheeled out dead children and I was breaking down.”
He was then transferred to the ward 16 when there was a slight improvement. The challenge though was the doctor schedules. Student doctors would come and tell Amooti to do tests and at times ask her to buy some medicine. Yet when the senior doctors showed up, they would tell her that the tests were not necessary or to even discontinue the medicine.
“I then took him to IHK where they were able to manage the pain, treated the bacterial infection and fed him every three hours. They did all the nursing care and I was able to sleep for once in a very long time,” she says in a weary voice.
After a month, he was discharged with no speech, could not walk and was feeding through the nasogastric tube because his neck muscles could not control the swallowing. He needed physiotherapy for a mouth and the BMM group on Facebook fundraised for the treatment.
While doing physiotherapy at home, on his bed, “I noticed he had spasms, he had fractured the bone in the thigh,” she says in a teary voice. A cast was put on the leg in Mulago as part of the treatment and catheter was needed because urine was not supposed to get into contact with the cast.”
Moses was taken to CoRSU but since they were not admitting children on physiotherapy, Amooti asked a friend who stayed in Kitooro to shelter them while he got the physiotherapy.
She says, “I would pay shs 35,000 for Uber every time I brought him for physiotherapy. I stayed at the friend’s for a month but was spending a lot of money. Since I related well with the nurses, I begged them that I stay in the hospital and they agreed.”
During traction, the catheter accidentally lay under the right buttock and she did not notice. He then developed a very big bed sore in October 2017 that took long to heal. His immunity was very low and therefore needed protein supplements which cost Shs25,000 and he needed two doses per day.
“I spent about four months without going back home. I only had a t-shirt and jeans. I had to buy more clothes,” she says.
CoRSU closes for Christmas holiday, so she came home and she had to nurse the bedsore by herself. Fortunately, the wound healed very well and the nurses were amazed.
She attended nutritional classes at CoRSU and knew what to feed him and how. However, in April 2018, she does not remember what went wrong but Moses got food poisoning and started vomiting. Since the neck muscles failed, the vomit got into the lungs and he was unable to breath.
“A friend gave me an insurance card at Kampala Hospital but all the treatment that was given did not help. After an X-ray exam, it was discovered that Moses had aspiration pneumonia which is as a result of inhaling food or liquid or vomit into the lungs. He was on oxygen for eight days,” she says, adding that: “When I noticed there was about Shs600,000 left on the card, I asked for a transfer to Mulago where he was put into the ICU. The parents on the sickle cell chatroom collected money for his treatment.”
In June 2018, he developed ulcers. His vomit was blood stained. He was treated and got better and was well until in February 2019 when he got aspiration pneumonia again and needed oxygen.
While she fed him the nasogastric tube at home, Amooti saw blood lines inside the tube. When she took him to hospital, the doctors said the tube was hurting him so they were going to put the feeding tube on the stomach.
Gastrostomy, the process of creating an artificial external opening into the stomach for nutritional support cost about Shs4m. The mickey button, through which he now feeds could not be found on both the Ugandan and Kenyan market, it is about Shs 1m. She reveals she got this through a friend in the UK. It must be kept clean and sterile to prevent blocking it.

Home care
Besides the hospital emergencies, Moses takes muscle relaxers, folic acid, hydroxyurea, anti-seizures, pain killers, morphine at home to manage his situation. In order to prevent infections, his mother buys sanitizers, iodine, oral swabs to clean his mouth and tongue.
He feeds on blended food and must eat after every three hours and be turned from the side he is sleeping on after every two hours to prevent the risk of bed sores. He outgrew his wheelchair so he spends most of the time laying down.
There is a special mattress that is electric and therefore needs constant electric supply so he does not get tired from sleeping on the sides.

Sickle cell in Uganda
Ruth Nankanja Mukiibi is one of the few people who have lived to celebrate their 38th birthday with sickle cells. Married to Mukiibi and a mother of two, Nankanja says testing for sickle cells is as important as an HIV test. Before I got married, I tested for sickle cells with my husband and the results proved that he was AA and I was a sickler. This helped us make informed decisions through our marriage and family,” she revealed.
Currently, 33,000 babies are born annually with the disease of which, 80 per cent die before the age of 5 years. “Up to 100 children are received at the pediatrics department in Mulago and many die without the doctors and parents knowing the cause of death being sickle cells,” said Sarah Kiguli from Pediatrics Department in Mulago Hospital, one of Uganda’s referral hospitals.
The statistics call for fast intervention through promoting sickle cells screening at birth and at all stages. However, this is only possible with the procuring of more Hemoglobin electrophoresis machine to support the only one at Mulago Hospital.
Sickle cells is an inherited change in the structure of red blood cells in which a mutated form of haemoglobin (Hb) distorts the red blood cells into a ‘sickle shape’. If both parents have the sickle cell trait at each pregnancy, there is a 25 per cent chance that the child will pick the trait from both parents. Sickle cells can only be controlled through such machines that help in diagnosis and once individuals are diagnosed, they can make informed decisions on how to manage their lives,” said Arthur Isiko ED of Bank of Africa. Bank of Africa (BOA) is slated to hold an inaugural annual Car Boot Sale on Saturday, 23 March 2013 at Legends Rugby Club in a bid to raise funds to buy a hemoglobin electrophoresis machine and create awareness about the sickle cell disease.