What it means to raise children with sickle cell

“I am the only father to my son and the only husband to my wife; knowing that if I do not take care of them, no one will. It is a tough experience because much as it is important to be there physically, there is also  need for money,” Fred Katende remarks.

Fred and Victoria Katende wed at Kireka Hill SDA Church in 2008. Nine months later, they welcomed a bouncing baby girl. It was a happy parenting time and, three years later another one was welcomed into the world. However, they were unable to have another child until 2017, when they had a baby boy.

The boy frequently fell sick and looked anaemic until a friend advised the couple to take him for a sickle cell test. 

Hospitalised

The news was broken to Fred. He did not know how to break it to Victoria that, Vosean, their 14-months-old son had sickle cell disease.  “He was transferred to a ward that had been combined for heart patients, cancer and sickle cell disease at Mulago hospital. While at the ward, Victoria leaned on the wall and I saw her slowly slide down, bent her knees until she sat on the ground. She wept uncontrollably.”

The couple did not know that they were carriers of the sickle cell gene. No one in their family had suffered from the disease including their two older children.

READ: The burden of non-communicable diseases

The doctor explained to them that it takes two carriers of the gene to have a child with sickle cell disease. So, with their older children, they screened for the disease. They discovered that: their first born is a carrier, the second born is not but their son had the disease. 

Vosean was admitted for 10 days, but during their hospital stay, Fred realised there were few men that were attending to their children.

“There were mostly women at the ward. The few men there, (he managed to speak to) were single fathers. I had to be there because I am the only father of my son and the only husband to my wife. They badly needed me. Even then, my wife was still in denial,” he remarks. 

Expectant

Days after being discharged, Victoria fell ill and when she went to hospital, the doctor told her that she was three months pregnant. 

“The good news instead saddened me. How was I going to give birth to another child who was going to be in pain for the rest of their life? I felt I was being a bad mother and I contemplated an abortion,” she says.

When Faith Lugoloobi, Victoria’s friend learnt of her situation, she visited and encouraged her to keep the baby. She counselled and took care of Victoria until she put baby Faith to bed by caesarean section and paid the hospital bill. When Faith was seven months old, he would cry almost endlessly, even for no reason just like Vosean. 

“Upon screening, his results were also positive. I was in disbelief and felt like I was about to lose my head. I wished a car would run me over. Not even my husband could comfort me. Fred called my friend Faith and she counselled me. I had been living in denial, I blamed myself and hated my husband,”  Victoria recalls.

After some time, reality set in for the couple. They had fragile children and to them, the world shut down. They neither visited anyone nor went to church. Any weather change, especially cold rainy days triggered pain for their children. 

READ: Gains and lows in Sickle Cell Disease treatment 

The children have to be on constant medication. Victoria had to quit her teaching job because whenever she chanced on gainful employment, one or both children fell sick for some days and then she had to stay home to take care of them.

The father’s role 

Fred, a chaplain at Namboole High School, is the breadwinner who sometimes has to take leave, especially when both children get into simultaneous crisises.

“My wife and children need me at such a time. Since the children belong to different age groups, they are usually put in different wards and my wife cannot handle them singlehandedly. Sometimes, I go the hospital with them, do laundry and sleep over and I go to work in the morning,” he says.

Rough tide

Victoria recounts a day when both boys were on oxygen for three weeks and she had to run to different wards to monitor them.

 “I begged doctors to put them in the same ward because I was overwhelmed and thank heavens, they agreed. All the women at the sickle cell ward know me as the mother of two,” she says.

She also noted that there were few men and sometimes she was forced to tell lies to the other women that her husband was only a brother. While at the ward, Victoria  witnessed death. A mother at the ward slapped her child who had been intubated and was on life support.

 “Your father left me and you are here disturbing me,” the mother yelled. A few minutes later, the child passed on,” Victoria recalls saying it was very traumatising. She had her own cross to bear but this triggered a few weird thoughts but she is glad to have a supportive partner.

“Many of the children with sickle cell disease leave their mothers in distress.  Their husbands run away as soon as the children are diagnosed with the disease,” she adds.

Victoria cannot help but recount a time a woman at the ward advised her to abandon Fred and remarry so as to have children without sickle cell disease. 

Affected by smaller spaces

Since Fred is a teacher, the family used to sleep in the staff quarters but a report from the doctor showed that poor ventilation was affecting their children’s health. Faith had fluids in his lungs and was frequently hospitalised. They were advised to find a spacious place and they relocated from Namboole to a  more spacious and cheaper place in Seeta.

“We live in a bigger place. The hospital bills are so high because every day, we spend about Shs 210,000 on each of the boys  when they are hospitalised. Whenever I get a job placement and, one of them falls sick, I skip work. There was a time I had saved some money to start a business but Faith fell ill and we used the money to pay the hospital bills,” she recounts.

With the new place, the couple says there has been a reduction in the number of hospitalisations.  Fred says they spend  a minimum of Shs20,000 daily on blood boosters, hydroxyurea, folic acid, Penicillin and antimalarial tablets for the children. They usually cough and everything comes to a standstill. One infection triggers another until they get hospitalised.

“The children are expensive to maintain. I work hard but things are so strenuous that at the end of the month, I realise that all the money that I earn is for school fees for the older girls, our rent, medication for the boys and feeding, but no savings,” he notes. 

At school

Vosean, 5, goes to Seeta Forest School and his teacher says he settled in well. 

“He is as good as the other children and he has not had any painful crisis except that he does not go for the swimming classes. His mother cautioned us not to take him given his condition. Also, we have to be patient with him because he is slow at writing.”            

The lockdown

During the lockdown last year, Victoria says, the children did not get into many crises, “except the day when Vosean got a crisis and we were unable to take him to hospital. The ambulance that would have been  available had taken patients to Mulago hospital. We used some herbal remedies and gave him Panadol after every six hours and thankfully, he recovered.”

 Victoria advises couples to get screened for the disease and for men to always stay and support their wives. 

“Please tell the men that it is not our fault that the children suffer from this disease. Let them be there for the women and the children too,” she urges.

She also calls for financial support because they plan to start a school that cares for children with sickle cell disease. 

 “We need people to support us financially so that we are able to pay our children’s school fees, pay house rent and also to start a school for the vulnerable children because all our savings end up as hospital bills. With the school in place, I am sure we shall be able to sustain ourselves.” 

She adds, “We have learnt to live one day at a time. We celebrate the days of good health and cry together in sickness. When they are not sick, we play in  the house, sing and read the Bible.”

Doctor says

The trigger for painful crises among sickle cell patients according to Dr Henry Ddungu, a haematologist at Mulago Hospital can include infections such as malaria, UTIs, pneumonia and any other that compromises their immune system. Such people should get the necessary vaccines, sleep under a treated mosquito net in order to prevent crises. 

He also notes that extreme weather such as hot dry seasons can cause dehydration and painful crises.“When the red blood cells do not have a lot of water in which they move, they tend to stick together and, thereafter cause a painful crisis. Also, cold weather can trigger pain. It is therefore important that patients keep hydrated and warm.”

Extreme stress, anxiety are also triggers. When a person gets progressive pain that lasts more than one hour, Dr Ddungu advises that you seek medical assistance for assessment and proper medication.

“The  current problem of people living with sickle cell disease today is that many of them do a lot of self-medication and end up using Opioids that in the long run cause them trouble.”