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Providing the best care for a child with Down syndrome

HIGHLIGHTS:

  • 1 out of every 700-1,000 children are born with Down syndrome.
  • Women who become pregnant over the age of 35 are at an increased risk of giving birth to a child with Down syndrome, while those over the age of 40 are at an even higher risk. The ratio of Down syndrome children for these groups are 1:250 and 1:70 respectively.
  • Children born with Down syndrome are more than capable of developmental progress if their parents bring them to specialized sessions at an early age.

 

Statistics from around the world show that 1 child in every 700–1,000 is born with Down syndrome. Down syndrome is a group of conditions referring to body organ abnormalities and mental disabilities. The cause of the condition is a faulty 21st chromosome. The age of the mother plays a crucial role, with 1 in every 250 children born to mothers over the age of 35 at risk of Down syndrome. The risk increases with the mother’s age, with 1 in 70 children born to mothers over the age of 40 at risk of having the condition. This is because the disease occurs as a result of a genetic irregularity.

Characteristics of children with Down syndrome

Down syndrome affects each child differently, depending on the type of chromosomal abnormality they have inherited. There are usually distinguishing physical aspects present, such as a small skull, lack of a nose bridge, bulbous eyes, muscular hypotonia, hyper-flexible joints and tendons, shortened fingers and neck, and large tongue. Mentally, children with Down syndrome will fall behind other children of the same age, and may also suffer from ASD and ADHD. Furthermore, they are at greater risk of suffering physical disabilities, including hearing difficulties, a squint, congenital heart defects and hypothyroidism.

Caring for children with Down syndrome

Children with Down syndrome are capable of developmental progress as long as their parents support and encourage them properly from early childhood. Infants born with Down syndrome should receive multidisciplinary care from birth, including screening for organ defects, close monitoring of their development, and tailored training, which should begin as soon as the condition is first detected. Monitoring and supporting the development of children with Down syndrome includes keeping an eye on their large and small muscle groups, cognition, speech, social and emotional behavior, and independence. Such training requires a multidisciplinary team consisting of doctors and other professionals, all of whom should advise parents and guardians on how best to support the child’s development.

Advice for parents of a child born with Down syndrome

  • Develop your understanding of the condition and be sure not to assign blame. Your continued support and encouragement will be invaluable to your child’s quality of life.
  • Bring your child in for regular health screening appointments. Down syndrome usually involves a number of other health disorders, such as cardiovascular issues, problems with the digestive system, hearing difficulties, sight issues and an increased risk of infection and blood disorders.
  • Believe in your child’s ability to develop as well as any other child the same age, but be aware that your child’s development may take a little more time. Consult your doctor regularly, and try to encourage your child to be as independent as possible as this will give them the best chance of eventually entering society.
  • Attend all developmental therapy appointments conducted by a multidisciplinary team of hospital-based experts who specialize in providing care for infants with Down syndrome. Such a team should include the following specialists:
    • occupational therapists who will prepare the child’s muscles through various physical tasks
    • physiotherapists who will support and encourage the use of large muscle groups, helping the child to balance, sit and walk without assistance,
    • developmental psychologists who will teach the child how to think critically and develop cognitive intelligence.
    • speech therapists who will train the child how to communicate effectively.

It is essential that the advice of these experts is strictly adhered to as it will help you continue their good work at home. It is also critical for medical staff to monitor treatment and assess development at every stage.

  • Care for the child just as you would any other, being careful not to acquiesce to their every demand or give them any more privileges than your other children.
  • Provide them with any special assistance they may require, such as enrolling them at a suitable educational institution or enabling them to receive additional support in addition to attending a mainstream school.

Modern advances in technology and communication have resulted in parents around the world having a greater understanding of Down syndrome, while screening for the condition can currently be carried out at an early stage of pregnancy.


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Kakanang Jantarapagdee, M.D. Summary: Pediatrics Developmental And Behavioral Pediatrics