It’s a whole new world for children born with Down syndrome (also known as Down’s syndrome–both are correct). In the past, a child born with the chromosomal disorder may have faced a life of exclusion, ridicule and perhaps even institutionalization. We did not understand the disorder and humans unfortunately tend to isolate and ostracize that which we do not understand. It’s an ugly evolutionary social-psychological response that was a survival mechanism when we were hunting and gathering on the plains of Africa 100,000 years ago but has been unnecessary for a long time. Today, we know what causes Down syndrome, we know how to care for children with Down syndrome and we know how to respect them and integrate them into our society.

What is Down syndrome?

Down syndrome is a chromosomal disorder that causes developmental delay (formerly called mental retardation), certain characteristics of physical appearance and, in some cases, defects in the ears, eyes, digestive system and heart among other physical health problems. Individuals with Down syndrome have distinct facial and body features such as shorter-than-average limbs, a flattened nose and almond-shaped eyes. The most distinctive characteristic of Down syndrome is a lower than average intellectual ability. Their IQ deficiency ranges from mild to severe (averaging at about 55 whereas the average for humans is 100) but is greatly affected by the environment in which they are raised.

What causes Down syndrome?

Down syndrome, also known as trisomy 21, is caused by an extra chromosome being present in the affected individual’s cells. DNA is organized into pairs of chromosomes and human beings have 22 pairs plus 2 pairs of sex chromosomes. Individuals with Down syndrome have a third copy of the chromosome that makes up the 21st pair and this is the cause of the disorder and all of its associated characteristics. In other words, where the average human has 22 pairs of chromosomes, a person with Down syndrome has 21 pairs and one trio of chromosomes (plus the sex chromosomes). This extra chromosome is essentially caused by a random genetic mutation that can occur at several different points in cellular development both before and after conception. Symptoms do vary dependent on what point the mutation occurred and whether the extra chromosome is complete or incomplete. Approximately 75-95% of individuals with this extra chromosome gained it from their mother’s egg with the other 5-25% gaining it from their father’s sperm.

Down syndrome can occur in a baby born to a mother of any age but the likelihood of it occurring increases with the mother’s age. For example, if the mother is under the age of 29 there is a 1 in 1000 chance that she will bear a baby with Down syndrome. If the mother is 35-39, that chance increases to 1 in 220. If the mother is 45-49, the chance increases to 1 in 25. Why is that? The leading theory as to why that is is called the “aging-ova hypothesis.” All of a woman’s ova or eggs are present when she is born. Men produce new sperm throughout their fertile life. But a woman’s eggs are as old as she is. It is thought that some older ova may have weakened due to age or exposure to toxins in the environment. Yes, the older a mother is, the risk of her child having a genetic anomaly increases, but genetic anomalies are still relatively rare and there is no need for concern until the mother is in her 40s. Even then, abnormalities are still uncommon and it is still very likely that a woman in her 40s will have a “normal” child, although never a better child. Down syndrome is not linked to the age of the father.

However, women of any age who do not have enough folic acid in their diet are more likely to have a child born with Down syndrome. A lack of folic acid in the diet prior to conception can increase the likelihood of many abnormalities in the baby. Thus it is important for women of all ages who are intending to conceive to have a diet rich in folic acid which can be found in eggs, beans, tuna and vegetables such as spinach.

What will a baby with Down syndrome be like?

Babies with Down syndrome can behave and develop a little differently from an infant without the syndrome. They may have feeding or breathing difficulties, smile less frequently, and engage in eye contact and exploration less frequently. However, all of these problems can be helped by extra, patient attention and encouragement. Individuals with Down syndrome, however, are known to have a sweet temperament and with the right support, soon the child will have the bright and happy face and demeanor of any thriving child.

What can be done to assist a child with Down syndrome?

Down syndrome can be detected prior to birth by a number of different tests and it is best to discuss such detection with your doctor. Early detection can help you prepare to raise a Down syndrome child by learning ahead of time the details of how your child might be different and what educational and social support systems are in your community for your family. Once the child is born, health problems can be detected and treatment courses can begin. Like all children, how far they develop intellectually, socially and emotionally depends largely on you. If you put effort into ensuring that your child is included in all family activities and receives the patient and dedicated support and stimulation that he needs, he will likely prosper. You must be an advocate for your child by finding the best educational and social opportunities for his individual optimal growth. This is true for all children. Support for children with Down syndrome varies with each community so it is good to do your research early in terms of what programs are available. Always start with talking to your pediatrician who will point you in the right direction.

There may be concern, as a new mother, that if you have a child that has a disability or disease of some form that will prevent him from having a “normal” life, then your child and your family will be consumed by this abnormality and will not be happy. This is simply no longer the case. If you treat an “abnormal” child as normal as is possible, there is no reason why your life or their life will be consumed by their abnormality. All children, no matter what they are like, need the same amount of love, attention, support and nurturing. But all children need different kinds of support and attention. Children with Down syndrome will have the best intellectual and social outcomes if they receive a great deal of love, acceptance, stimulation and support….just like all children. If your child will have or has Down syndrome, your life and his life may be a little different, but it will be no worse. To paraphrase the fantastic children’s author Mem Fox remember that we all laugh the same and cry the same, bleed the same and love the same. It doesn’t matter how quickly or far a child develops intellectually, as long as the child can smile and laugh and enjoy life.

How will a child with Down syndrome live as an adult?

That really depends on his childhood and the support system he has had since birth. Most adults with Down syndrome require some sort of supportive living situation. They often can hold down jobs, but are not financially independent. They can take care of themselves to a certain extent, but usually not enough to be entirely independent. There are group homes for adults with intellectual disabilities and other supportive systems in place. There are many social opportunities for individuals with Down syndrome as there is a strong network of sporting leagues for individuals with intellectual disabilities. Some adults with Down syndrome can be even busier than an average adult with their job and their sports and hobbies. Individuals with Down syndrome have been known to have a shorter life expectancy than average but a shorter life does not preclude a fulfilled life.

-Danica Longair