My journey of raising a child with Down syndrome

Monday April 15 2019

Nakakande says after getting help, Tamale is

Nakakande says after getting help, Tamale is now able to live independently and help out with house chores. Photos BY Roland D. Nasasira 

By Roland D. Nasasira

When Safina Nakakande gave birth to Nassif Tamale in February 1995, he was a normal child. However, there was delayed development and while some babies sit at approximately six months, Nakakande recalls Tamale sitting during the seventh month.
“He delayed to sit and started walking at 18 months. Although he was a quiet baby who never cried a lot, he would always nod his head. While his siblings started school at three, Tamale started school at four years,” Nakakande recalls, adding that at 10 years, Tamale still nodded his head all the time, something Nakakande still perceived to be normal.

Medical opinion
“One day, a friend suggested that I take him to the neurosurgical department at Mulago National Referral Hospital for a check-up. On arrival, I was recommended to a German professor who carried out several tests which all revealed that my son had normal brain function and there was nothing to worry about,” Nakakande recalls.
“I was, however, given some medication to help with the nodding of the head but whenever I would administer the tablets, he would become too weak and sleep a lot. He would at times become uncomfortable and grimace in pain. Every time he did, I would rush him to Mulago but doctors would carry out the same tests and still come up with the same results; a functioning brain,” she adds.

As a mother, Nakakande says she did not know what Tamale’s actual problem was; but believed something was not right. In 2013, when Tamale was 18, Nakakande was called to Tamale’s school and advised to take care of her son from home. She was told by the headmaster that Tamale’s condition had worsened as he no longer stayed in class, tore books and loitered all over the school compound.

“It was hard to take in. I started wailing. Doctors had assured me that my son was normal but now I looked at the prospect of him never going to school again and I was worried,” she recounts.

One day, while Tamale played at one of the neighbouring schools where one of Nakakande’s friends taught, Rose Niwagaba, the director of Angels Centre in Nansana that takes care of children with special needs, saw Tamale and knew straight away that he had Down syndrome.
In 2018 on the eve of World Down Syndrome day on March 21, Niwagaba invited Nakakande to Imperial Royale Hotel in Kampala for the day’s celebrations. She used this meeting to inform Nakakande that her son would be among the day’s performers.
“It was on that day that I discovered that Tamale had Down syndrome. The characters of the children I met at Imperial Royale Hotel were similar to those of my son. That day, it started sinking in and I was glad that I would now be able to get him the help he needed,” Nakakande recalls.

Expert say
Dr Daniel Tumwine, a paediatrician at The Children’s Clinic in Naalya, Kampala, says Down syndrome is a condition that arises from a person having an extra chromosome in their cells. A chromosome is a thread-like structure found in the nucleus of all cells and carries genes.
“Each human cell has 46 chromosomes, twenty-three from the father and twenty-three from the mother. These chromosomes pair up and are numbered from one to 22. They will also have two sex chromosomes, X or Y depending on their sex. However, a person with down syndrome will have three chromosome at chromosome 21 instead of two,” Dr Tumwine explains, adding that it is why World Down Syndrome day is celebrated annually on March 21.
He says globally, nearly one in every 730 children born will have Down syndrome. Not known how common it is in Uganda, Tumwine notes that it is thought that the figures are pretty similar to those of other countries.

Since 2018, Nakakande says Tamale has made friends who have supported him, including those at Angels Centre. She says here, the caretakers are able to connect with him more than she can. What is special about him is that when he realises that you love him, he stays near you but when he learns that you do not, he also keeps a distance. “At home, he is loving and caring. When I return from work in the evening, he is the first person to open the door. When he wakes up, he never takes breakfast without doing any work but the other children first take breakfast and work later,” Nakakande concludes.

Most children with Down syndrome will have characteristic features. They mostly have a short broad head, a short neck, a flat nose, slanting eyes, extra skin fold on their eyes, an open mouth with a protruding tongue and small ears. They may also have a prominent crease in the palm of their hands and a large gap between the large toe and second toe of their feet. They generally also have weak muscle tone.

Dr Tumwine observes that diagnosis for Down syndrome remains a big issue in Uganda where patients are usually diagnosed using signs and symptoms. This is because machines to diagnose chromosomal abnormalities are not present. Blood samples, therefore, need to be sent to countries such as South Africa, which is costly.
Children with Down syndrome do not get optimal education because of ignorance of the condition by parents and teachers alike yet many would benefit from vocational skills to help them live and independent life.
An important issue that many people with Down syndrome face is stigma. Ignorance within the community leads to ridicule, threats and isolation for persons with the condition and their families. Understanding the condition goes a long way in mitigating stigma and encouraging acceptance.

Like Tamale, people or children with Down syndrome experience a number of complications. The commonest is intellectual disability, which Dr Daniel Tumwine, a paediatrician at The Children’s Clinic in Naalya, Kampala, observes occurs in almost all patients. This may be mild or severe enough for the person to require assistance in daily living. Half of all persons with Down syndrome will have a heart disease that may be curable if detected early.

To mothers like Nakakande, most of these conditions are not detected early in children and become a major source of illness and death.
Patients also have a low immune system and tend to get a large number of ear and lung infections. They also have defective blood cells which not only predisposes them to frequent infections but to blood cancers called leukaemia. In addition, patients also have hormone issues, particularly thyroid hormone which is important for proper metabolism of the body, and insulin hormone which prevents diabetes by controlling blood sugar.
Children with Down syndrome acquire milestones pretty late, just like Tamale; so a child will sit at one year or longer instead of six months. They will delay in acquiring language and other motor and intellectual skills.