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When a child is born with Down's Syndrome parents and family members always wonder why? Understanding the facts of down syndrome and the different ways of coping can help you get through the difficult times of questioning.
When a parent first finds out that their newborn infant has Down's Syndrome the initial reaction is shock, disbelief, sorrow and turmoil. A diagnosis of Down's Syndrome usually occurs in the hospital within the first few hours of birth. It is one of the few intellectual disabilities that parents find out about before they have been able to bond with their infant. Most other intellectual disabilities come during the later developmental stages of infancy or toddlerhood. With these later discoveries the realization that the child is not developing on the same schedule as “normal” babies comes gradually and is not as much of a shock to parents.
Finding out something is wrong with your baby while you are still in the hospital is a very difficult thing, indeed, to cope with. Not only have you not had a chance to get to know your baby and bond with them much, but you may be experiencing postpartum blues. Postpartum blues are a result of a drastic change in the hormones that support pregnancy back to their original pre-pregnancy state. This causes a mild to severe depression in many women. This is a very vulnerable time for new Moms and Dads. Finding that anything is wrong with your baby while you are still in the hospital is very difficult. But, it may help to know that most parents rise to the occasion and get through this time just fine.
Doctors are being educated more and more on the method of breaking the news to parents about abnormalities in the baby will really make a difference in the way the parents will cope. Certain steps should be taken to ensure it is a dignified and positive experience for everyone. Parents should always be told while they are together with their baby in their arms, if possible. They should be told in the privacy of their room in a caring manner. The Doctor should not dwell on all the health conditions that “could” happen as the child grows. The severity and conditions vary great with down syndrome. The Doctor should stay and answer as many questions the parents have as they can without dwelling too much on the negative at this time. Time will heal and the parent will learn to deal with their emotions. Then, education about down syndrome can occur.
Parents should never feel guilt or blame themselves for having a child with down syndrome. Some moms feel they must have done something during their pregnancy that caused the baby to have Down's Syndrome. This is not true. Down syndrome is determined at the very moment the cells combine when there is a whole or part of an extra chromosome in the 21st spot. The cells divide and duplicate in a complex series of fetal development, in which errors can occur that we have no control over.
There are three different types of Down's Syndrome. The most common form of Down's Syndrome is called Trisomy 21. This type usually occurs to mothers that are over the age of 35 when giving birth. The reason down syndrome births increase as a woman gets older is that her eggs she was born with are older and there is more chance of error while chromosomes are combining. The ratio of Down's Syndrome births in women who are age 20 is one in 2000, in women who are age 35 it is one in 380 births and in women who are age 40 it is one in 100 births, and in women who are age 45 it is one in 30 births.
Babies born with Down's Syndrome show a distinct set of physical features. The doctor will usually be quite certain of a diagnosis of down syndrome just by the baby’s physical features. A chromosome test will be done to confirm the diagnosis. There are more than 120 features that are recognized in Down's Syndrome, some of these features are: a small head that is flat in the back, small ears, more skin on the neck, upslanting eyes, flat bridge on the nose with a fold of extra skin on the inner eye, a large tongue, wide space between the first and the second toe, hair is soft and straight, and short fingers with a crease going straight across the palm.
In some cases there is a congenital heart problem, in fact 1/3 of children born with Down's Syndrome have a heart malformity that will require surgery. In addition, some are born with a digestive tract defect and other physical abnormalities that may require surgery.
As far as mental retardation, nearly all born with Down's Syndrome will have some form of retardation. But the severity varies greatly. In some it is mild to moderate mental retardation and in others it is severe. But, the good news now is that with today’s early therapeutic intervention children with Down's Syndrome are believed to be capable of much more than they once were. Children with Down's Syndrome can develop and learn throughout their life. They will always be able to go forward in learning, just at a slower pace. Learning does not stop in adulthood as some people have been led to believe about Down's Syndrome. As long as they have an opportunity to learn, they will learn just at a slower rate.
Over the past couple of decades great advances have been made in the development of infants and children with Down's Syndrome in the pre-school and school years. Special education, speech therapy and physiotherapy early on, has helped advance their mental abilities. Studies have shown that when a child received special education and intervention in the pre-school years they scored 20 percent higher on intelligence tests than those that did not. However, studies have also shown that children with Down's Syndrome raised at home score 50 percent higher on intelligence tests than those that are raised in an institution. This is an important finding as all children need love, and deserve to be in a close family unit to develop, grow and learn.
Raising a child with Down's Syndrome is a unique and special experience. It may be more difficult at times, but the rewards and joy you will receive will be enormous. Knowing that you can cope with the difficult periods and be a successful parent to a beautiful Down's Syndrome child will go a long way in your peace of mind.
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