Razia Iqbal talks about her 22-year-old son, Muneeb, with obvious pride; he has won a couple of gold medals along with silver and bronze medals for the country. Any mother would be happy at her son’s achievements. But then Muneeb is not an ordinary person. When he was a month old, it was confirmed that he has Down syndrome — a genetic condition which causes various medical issues and an altered course of intellectual development.
However, with early intervention and therapy, the quality of life for those who have Down syndrome can be improved dramatically; they can achieve the developmental milestones other children achieve, albeit slightly later. Just like other children, they can be taught to attend to their daily self-care needs, as well as attain whatever goals they desire.
When she was told about Muneeb’s condition, Razia was shocked because her four older children were healthy. “We didn’t suspect anything nor did our doctor tell us anything when Muneeb was born,” says Razia. “He was a healthy baby. People used to say he looks Chinese or Japanese — perhaps because of his slanted eyes and chubby face. When he was a month old, he contracted pneumonia. We took him to the hospital, where doctors conducted certain tests and confirmed that he has Down syndrome. In those days, there was not much awareness about this condition and no proper therapy programmes.” Nevertheless, Razia resolved she would do everything in her power to help her child.
Down syndrome is a genetic condition which occurs when an individual has an extra or partial copy of chromosome 21. It is usually diagnosed upon physical examination, as people with Down syndrome tend to have characteristic facial features: they often have upward slanting eyes, flat noses and small ears, a protruding tongue, short fingers and a single crease that runs across the palm. They may also have low muscle tone and loose joints, making them very flexible. But this does not mean that they all look alike. In fact, people with Down syndrome possess these characteristics to varying degrees, and do resemble their families in appearance and temperament.
Although it is a lifelong condition, with the right exposure, children with Down syndrome can enjoy healthy, happy and productive lives
Dr Salman Kirmani, associate professor and chairperson of the Department of Paediatrics and Child Health at the Aga Khan University Hospital, says, “With the developments in medical technology, Down syndrome can be diagnosed by ultrasound and blood tests during pregnancy, and confirmed after birth via blood tests for chromosome analysis.”
Discussing treatment options Dr Kirmani says early intervention is the key. “Therapy should begin as early as possible; even in the first week of life,” he says. “You cannot reverse Down syndrome as there is no cure for the condition, but through various therapies, one can dramatically impact the quality of life.” Therapy has three components — physical therapy, occupational therapy and speech therapy. “Since they have intellectual challenges, people with Down syndrome learn in a different way, and parents and teachers must adapt to their learning needs,” he adds.
Razia took Muneeb for physiotherapy sessions followed by a massage at home, according to the doctor’s advice. When Muneeb was two years old, he also began speech therapy. “We sent him to a special school — in fact, changed a couple of schools — where he was involved in various physical activities,” says Razia. “He showed an interest in swimming. The school enrolled him for the National Games and he was selected for the Special Olympics.”
In 2013, Muneeb participated in the Special Olympics Asia Pacific Games in Australia and Special Olympics World Games in Abu Dhabi in 2019. Credit for his success, to a large extent, goes to his mother’s persistence (with the family’s support) at providing the best for her child.
While Muneeb was born at a time when awareness about Down syndrome was limited, Ayesha opened her eyes in a world where awareness about the condition was growing. Her mother, Maria Hasan, had had a difficult pregnancy when she was expecting Ayesha, though her earlier two had been easy. Despite having been tested for Down syndrome during pregnancy, it was not confirmed. But within five to 10 minutes after her birth, the doctor expressed concern that Ayesha had Down syndrome. A few tests confirmed his diagnosis.
Ayesha had some health complications — such as persistent diarrhoea, breathing issues and fits as a baby — but the problems were controlled with medication and, at age 3.5 months, the doctor advised the family to seek therapy. “I was advised to take her to Karachi Down Syndrome Programme (KDSP) for therapy. We started right away and she showed good progress,” says Maria. “Ayesha achieved her childhood milestones only by two to three months later than other children. Now at 2.5 years, she goes to a regular school and is sharper than her sister who is a year-and-a-half older than her.”
Children with Down syndrome may have speech difficulties. While motor skills develop with early intervention, speech development takes more time. “Ayesha is very social and has learnt to follow commands, but she still has problems in communicating,” says Maria. “We are continuing speech therapy sessions to help her improve.” Ayesha’s older sister also accompanies her for speech therapy. She also helps Ayesha at home after learning the skill at the KDSP.
Twenty-three-year old Zahra has overcome her speech impediment to a large extent. Talking to her on the phone, one can hardly tell that she was born with Down syndrome. Zahra, who is bright and lively and an inspiration for many, was lucky as her parents could afford to take her to the UK where she received timely therapy. At the time, there were no facilities for specialised therapy in Pakistan. Now, she herself works with children with Down syndrome.
Zahra’s mother, Shirin Irfan Halai, says, “Zahra received therapy at an early age. Her speech was not too bad as she could speak one or two words, though not proper sentences. She struggled with words that need rolling of the tongue for which we worked with her at home. She received some therapy when she was between three and six years old. We made it a part of our lifestyle to guide her in areas where she lacked.”
Most people believe that segregated special programmes are the only option for children with Down syndrome. However, research shows that an inclusive educational environment in a regular school is more beneficial for intellectual, social and physical development.
Cyra Khawar, assistant manager for awareness and fundraising at the KDSP, says that it is important that children with Down syndrome go to regular schools. “For this purpose, we try to get children coming to the KDSP admitted in regular schools, though it is a great challenge,” says Khawar. “We have formed partnerships with schools and train their teachers to cater to the educational needs of children with Down syndrome. Without proper training, the teachers will not be able to contribute positively to the child’s development in the classroom.”
Zahra began regular playschool at 18 months of age, and always went to mainstream schools, not special schools. Her mother, Shirin, stresses that parents should let their children go everywhere and do everything.
“Zahra interned at some schools but discovered that she wanted to work with children at KDSP. Besides helping kids to develop fine motor skills, she helps to calm them down when they are upset. The children love her and look for her when she is not around.”
Zahra describes herself as a “green person” and “environment friendly”. She helps her mother in her recycling venture called Recycle For Charity, which she started eight years ago. Zahra began advocacy for recycling and took the initiative to collect waste for her mother’s venture. At the same time, she also helps out at her brother’s restaurant.
Besides delays in achieving childhood milestones, children born with Down syndrome often have certain medical issues, such as hearing and vision problems, heart concerns, thyroid abnormalities and gastrointestinal problems besides intellectual disability. “These are treated according to an individual’s needs,” explains Dr Kirmani. For instance, if a child has hearing problems he or she will be treated for that, or if there is a heart issue, it will be treated accordingly.”
Shirin feels the general public does not have a compassionate understanding about Down syndrome. The importance of compassion cannot be emphasised enough, as these children need empathy, not sympathy. There is a social stigma associated with conditions such as Down syndrome. It is generally thought that children with Down syndrome cannot do anything, while the fact is that they can do pretty much everything.
It is also generally believed that people with Down syndrome do not live very long. However, life expectancy for these people has increased dramatically during the past few decades. It is generally related to life expectancy in the general population, which in Pakistan is 66.4 years, 78.6 years in the US and 80.9 years in the UK. According to the KDSP website, for children with Down syndrome, life expectancy has risen from 25 years in 1983 to 60 at present. One can say it is because of better management of their associated medical conditions, better mobility and eating habits and largely due to the end of the inhumane practice of institutionalising people with Down syndrome.
Razia says, “When I used to take Muneeb for physiotherapy, I often had to travel by bus, as in those days we could not always afford a taxi. Women would often shy away from sitting next to me on the bus or would tell me I was wasting my time and money on him. ‘Ye tau Allah walay hain, take him to a shrine.’”
Razia’s experiences highlight the ignorant attitude of our society towards people with special needs. However, Dr Kirmani stresses that it is our collective responsibility to cater to the needs of individuals with Down syndrome. Their potential is limitless and society, as a whole, will be so much richer with the love and care that they bring into this world.”
Published in Dawn, EOS, November 10th, 2019