Never too soon

For parents, news that their child has Down's Syndrome is devastating. But Gihan Shahine discovers that early intervention can make all the difference
When Amina was told her month-old daughter Walaa had Down's Syndrome (DS), her reaction was mingled shock, disbelief and grief. She had three other healthy children and there was no history of DS on either side of the family.
"I just couldn't face it or face anyone," she recounts. "I didn't even know what DS was, and I couldn't tell my children and family."
Turmoil soon gave way to hope, however, when Amina realised Walaa was responding positively to treatment. A paediatrician prescribed a list of drugs, and Walaa was speaking and walking at the same age as most other children (a typical DS child would suffer cognitive and motor delays).
"I started to hope that, with more effort, Walaa could be as close to normal, as possible," says Amina. "I decided to treat her as a normal child. I never hid her, and I believe contact with people helped her develop a lot."
Walaa was admitted to a nursery, where interaction with other children helped her make rapid linguistic and behavioural progress.
"It was the best day of my life when the nursery accepted Walaa," Amina says. "DS children are rarely taken at regular nurseries. But this one did when tests showed Walaa was not aggressive and her IQ was near average."
The nursery's doctor then advised Amina to enroll Walaa in speech therapy programmes, which resulted in "a good step forward." Schooling, however, remained a challenge, as regular schools do not admit children with mental disabilities. Walaa suffered a serious setback when enrolled in a specialised school for the mentally challenged; then Amina found a private school with a class for disabled children.
"There, education is good and the chance to mingle with regular students during break and on the bus made a big difference," Amina says with relief. Today, Walaa is completing her seventh successful year in school. She is doing well in dictation, mathematics and reading. She will keep going to school for as long as she can, and has already started vocational training that will help her find a job later.
Walaa is independent and friendly: she eats and dresses alone and is "very nice to other children." This year she won a gold medal in basketball and is attending swimming classes with the other children. "She also has artistic talents, especially in music, and that can help her find a job later," Amina adds with a smile.
The lesson to be drawn from Walaa's experience? Her mother is adamant: "Parents should not give up if they find out their child has a disability."
Today, early therapeutic intervention helps children with Down's Syndrome achieve far more than they once could. Detecting the problem as soon as possible can prevent an impairment from becoming a disability, prevent or minimise the degree of a primary disability, and avoid the occurrence of secondary handicaps. Programmes providing medical or surgical treatment and/or early cognitive stimulation and teaching (physiotherapy, speech therapy, special education...) introduce children to a set of experiences that help them reach their maximum potential and participate in community activities and relationships. Such programmes can be centre-based, home-based or a mixture of the two.
"The importance of early intervention became known worldwide when it was discovered that most disabilities were only detected later in life, which had a serious impact on the disabled child, his family and society as a whole," explains Dr Alaa Shukrallah, a pediatrician specialised in child disability and a UNICEF consultant for early intervention programmes. Shukrallah is also the chairman of the non-governmental Association for Health and Environmental Development (AHED), which deals with issues of disability.
Mention early intervention, and Shukrallah will give countless examples of how crucial it is, clinically and socially. Without it, he argues, a child with motor handicap will develop learning disabilities resulting from limited exposure to environment and knowledge, while a child suffering from strabismus may lose her sight altogether -- to mention just two examples.
"Failure to intervene at an appropriate time is even more dangerous for those children who are born with a metabolic disorder and an enzyme deficiency that converts milk into toxic substances, causing brain damage and, hence, severe disability," Shukrallah warns. "A simple blood test at birth or in early infancy could reverse the process."
But can early intervention reverse DS altogether? "No, but it can be life-saving -- in addition to the great impact early therapeutic programmes have on the behavioral and cognitive levels," Shukrallah quickly replies. DS children are usually born with congenital abnormalities and diseases that, without therapeutic and surgical intervention, could lead to death.
In The Effectiveness of Early Intervention, Donna Spiker and Marita R Hopmann explain: "Participation in early intervention can enhance early development and get the child off to a good start in order to reach maximal intellectual and adaptive functioning." If early development proceeds at a faster rate, they add, more closely approximating a typical developmental course, higher final levels of cognitive, linguistic, adaptive, academic and other skills can be attained. At the very least, they conclude, early intervention will slow the progressive decline in development for children with Down's Syndrome.
According to Dr Mona Sanad, head of the disability and early intervention department at Al-Azhar University's child-disability centre, one study conducted on a group of DS children aged between seven and nine found that those who had benefited from special education and intervention in the pre-school years scored 20 per cent higher on intelligent tests than those who had not. The group was divided in two: the first participated in early intervention activities in infancy and early childhood, the second did not. A comparison between the two groups revealed apparent improvement as a result of early intervention. Half the early-intervention group was mainstreamed into regular schools, while the others were enrolled in specialised schools for the mentally-challenged, but seemed to be improving. Half the control group, on the other hand, was enrolled in specialised schools for the mentally challenged, while the remainder had to stay home: no school would accept them.
The study also shows that 27 per cent of the early- intervention group went on to achieve borderline average results in intelligence tests; the remaining portion of this group, while also improving, remained within the clinically retarded range (with 64 per cent suffering from "mild," nine per cent from "moderate" and only five per cent from "severe" retardation). Of those who had not benefited from early intervention, however, none reached borderline intelligence, and the percentages of retarded children were 50 per cent in the "mild" category, 38 per cent "moderate," and 12 per cent "severe."
"The real challenge, however, remains within the family, as most parents are unaware of how important early intervention is. Besides, more often than not, they don't know where to go for help," Sanad maintains. "When parents find out that something is wrong with their child, they get shocked, confused and depressed. And that makes our job much more difficult: early intervention programmes are only effective when parents cooperate."
Because the parent-child relationship is critical for the DS child's development, Sanad explains, families should create as normal a life situation as possible for the child. "What happens, however, is that most parents are ashamed. They lock the child up and hide him away from people, which negatively affects the child's mental and physical health," laments Dr Mohamed El-Sawi, professor of paediatrics and genetics at Ain Shams University. One reason for that, Shukrallah concurs, may be that DS children have delayed reactions, making them less gratifying as social partners, and thereby negatively affecting the mother-child relationship. "Many cases die due to neglect, and many others develop severe retardation," El-Sawi adds.
DS children, El-Sawi explains, are very sensitive and emotional. They feel parents' neglect and despair, which in turn breeds a sense of frustration that hinders their mental development. "With encouragement and support, however, DS children can reach their maximum potential," El-Sawi emphasises. "And they have skills that qualify them as productive members of society."
Family-support groups are thus an important component of any intervention programme, and AHED, a number of NGOs, and several university centres are trying to integrate them as full partners.
"Linking to other parents and professionals greatly helps parents cope with disability," Shukrallah notes. "It helps them overcome initial feelings of dismay and shame and develop a positive attitude toward disability as a dignified experience."
Still, many obstacles exist to early intervention. About 90 per cent of NGOs dealing with disability are based in Cairo, depriving rural DS children of the benefits of their experience. In rural and impoverished areas, furthermore, many women give birth at home, and many cases of DS thus go undiagnosed. Although the syndrome, characterised by certain recognisable physical features, is easy to diagnose at birth, many cases are discovered later -- often too late for intervention to do any good.
"Most doctors are not trained to detect disabilities. If they do, they do not know where to look for appropriate help," Shukrallah explains.
"Doctors tend to prescribe costly and ineffective drugs. They know nothing about the social and psychological services that parents should turn to for help."
The Ministries of Education and Social Affairs have been building schools and nurseries for the disabled, but have yet to put in place a network linking these institutions.
Shukrallah deplores the lack of "a national system for early detection and intervention, especially in the health- care sector. There is help for those who seek it, but there should be outreach programmes for those who are unaware that help is at hand."
The Ministry of Health and Population is about to change all that, however; it has begun to integrate the concept of early intervention in its policy, and to coordinate official and private efforts.
A case in point is a UNICEF-funded project in Ain Helwan. The Integrated Care Society (ICS) and AHED recently launched an early detection and intervention programme in a number of state-run primary healthcare centres where they trained personnel in handling different cases of disability. The project has proved successful and AHED is now applying it in other health-care centres.
On the prospect of applying early-intervention programmes nationwide, Shukrallah is therefore optimistic: "Egypt has all the necessary potential -- infrastructure, NGOs already working on intervention programmes, and a growing attention on the part of the government. The challenge, however, is to build an integrated system addressing the problems of disabled children and their families in society."
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