Managing down syndrome – Tips to improve the quality of life

By Dr. Anil R, Consultant- Neurology, Columbia Asia Hospital Hebbal 

Latha and Kumar were expecting their first baby and they were very happy about the news. They had made all plans to welcome the baby. As Latha was in her mid-thirties, both families had taken extra care and they were taking Latha for regular check-ups. Latha did not want to go through the hassles which her sister had faced a couple of years ago by ignoring few crucial tests. The gynaecologist recommended Latha to undergo a test in the first trimester of her pregnancy to check the health of the foetus. During the first trimester combined test, the doctor recognised some abnormalities in the foetus and informed the couple of a possibility of the baby having down syndrome. Both Latha and Kumar were shattered by this news. After discussing with the family, they decided to go ahead with the pregnancy. To confirm the condition, an integrated screening test was performed in the second trimester which also revealed abnormalities in the foetus. Latha confirmed that she wanted to go ahead with the pregnancy and that she will take care of the baby no matter how difficult it may get. The gynaecologist advised the couple to consult with a psychologist who can guide them to manage the baby after delivery. 

Like Latha and Kumar, most are not aware of down syndrome and management of the condition. Hence, it is important to undergo the tests recommended by the doctor during pregnancy to avoid any complications for both mother and foetus. Down syndrome is a genetic condition that takes place due to abnormal cell division resulting in an extra gene from chromosome 21. The extra genetic material is the reason for the characteristic features and developmental issues of Down syndrome. In majority of the cases, Down syndrome is caused by trisomy 21, where a person has 3 copies of chromosome 21 instead of the regular 2 copies in all cells.

The advancements in the healthcare industry is helping doctors diagnose if the fetus has Down syndrome within a few months of pregnancy through scans and blood tests. Despite these advancements, India still records a significant number of cases with Down syndrome. Better understanding of the condition and early interventions help in improving the quality of life for children and adults with this disorder and help them live happy lives.

Babies who are affected by down syndrome have a distinct facial appearance, learning disability and developmental delay. It can also cause other medical conditions like heart and gastrointestinal disorders.

What are the risk factors?

Certain parents have a greater chance of giving birth to a baby with down syndrome. The risk factors include:

• If the mother is aged above the age of 35 
• People with genetic translocation
• Having one child with down syndrome

People with down syndrome are also more prone to infection. They may struggle with respiratory infections, urinary tract infections, and skin infections. Therefore, giving an extra attention to them is important. 

With the help of medical interventions, special educators and therapists, people with down syndrome can lead a fairly normal life. 

Here are few tips which the parents and caretakers should follow to manage children with down syndrome: 

Set priorities: Kids with down syndrome need extra attention. Set your priorities for them. Do not let them feel that you are ignoring the child. 

Have a set routine: This will help them to improve their quality of life. Setting a time table for each activities will make them get adjusted to it without much difficulty. 

Establish communication: Individuals with Down syndrome face difficulties in speaking during their early stages of growth. Caretakers and parents should establish a communication channel using eye movements, facial expressions, hand gestures and other means of communication that the child understands.

Never blame them: Caretakers and parents should never lose cool and blame the child. Never abuse them and demotivate the child. It will negatively impact their growth. Always be encouraging and appreciative. It is always better to maintain calm and be receptive. 

Use play to learn: There isn't any clear demarcation between education and play. The child might suffer from down syndrome but can learn while they play. When your child plays with toys, introduce objects, names and other things. 

Be factual: It's easy for caretakers and parents to be bogged down with myths. Be armed with factual information. If you want answers to things you don't know, spend time on researching. Get in touch with experts. Share your pain or agony with families, guardians who are experienced in dealing with Down syndrome. Sometimes you might find a solution to your problem when you share information. 

Help their growth and development: Children with down syndrome are typically slow to crawl, walk, and talk, but you can aid their growth and development through physiotherapy, speech therapy, etc.

Managing kids with down syndrome may take an extra toll on your emotional and physical wellbeing. But the time you spend on them will make them stronger and independent. Therefore, providing them that extra attention is always crucial.