Down’s syndrome is a disease that causes mild to moderate mental retardation and physical deformities. In India, around 21,400 babies suffering from this genetic disease are born each year. A condition that affects an individual for life, it is usually attributed to an aberration in the genetic makeup of the individual.
Age of the parents – over 35 years for the mother and over 40 for the father – is considered to be a risk factor for Down’s syndrome in the fetus. So if you are an expectant couple with either spouse falling within these age groups, your doctor may order one or more of the following tests:
Amniocentesis, to check the fluid (called amniotic fluid) in which the baby grows in the womb.
A blood test such as the triple screen.
An ultrasound to determine the baby’s neck-fold thickness, indicative of a genetic abnormality that may manifest as Down’s syndrome after birth.
Physical features typically observed in Down’s syndrome babies that can alert a parent or doctor to the presence of the condition include:
Facial features such as a flat face, flat back of the head, upward slanting eyes, depressed bridge of the nose, wide set eyes, small and low set ears and small mouth.
Short neck and limbs that are floppy, with loose joints.
This condition is also accompanied by internal problems such as heart valve defects, intestinal malformations and ear and lung problems.
Once the presence of Down’s syndrome has been identified, detailed investigations of his/her genetic makeup are usually undertaken next to find out if other abnormalities exist. Tests to check for the presence of a thyroid problem and other major illnesses also need to be conducted.
While this is a condition that your child will live with throughout his/her life, there are things you can do as a parent to help your child cope and live as normal a life as possible.
If your first reaction to the knowledge that your child is affected is anger – at the situation or perhaps at your spouse – seek counseling (separately and as a couple) so that your relationship is not damaged. Look after your own mental and emotional health so that you can provide the strong support that will help your baby more than a therapist or a doctor.
Research the disease, related conditions that can affect your baby, behavioral problems you will need to deal with, educational and vocational possibilities for your child, what you can do to help him/her lead an independent life, and what you can do to prevent this condition in a subsequent pregnancy.
Overcome prejudices and negative feelings to give your baby all the love and attention that he/she deserves. Babies with Down’s syndrome are usually very happy babies, enjoy music, and love being cuddled and cherished just like other children.
Ensure that your child undergoes tests to screen for diseases that commonly affect Down’s babies. This will alert you to any abnormality and help your child get medical attention in time.
Individuals with Down’s syndrome are prone to mental health problems like depression and anxiety. They may also develop speech and hearing disabilities. Regular assessment can help determine if any of these problems have occurred and if therapy is required.
Teach your child basic developmental skills such as eating, dressing and washing. Teach your child to look after himself/herself physically and emotionally when you are not around. Be patient as your child will take longer to acquire these skills than other children.
Prepare yourself and your child to deal with social hurdles. These could range from curious stares from strangers to hurting remarks or probing questions from well-meaning but inquisitive relatives and peers. Deal with these situations without losing your temper or becoming emotional, so your child may learn the same. Protect your child from teasing by other children. Peers can be cruel and may scar your child’s psyche; inculcate a strong self-esteem in your child early on by explaining that though different, he/she is special. Also be alert against sexual abuse and teach your child to protect himself/herself.
Don’t feel overwhelmed or alone. Reach out to special needs schools and other parents of children with Down’s syndrome. Engaging with them will help improve your child’s social skills and also provide an important source of support to you. Special schools also offer vocational training to older children with Down’s syndrome, to help them become independent adults.
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Down’s syndrome is a disease that causes mild to moderate mental retardation and physical deformities. In India, around 21,400 babies suffering from this genetic disease are born each year. A condition that affects an individual for life, it is usually attributed to an aberration in the genetic makeup of the individual.