Parental Emotions when a Baby is Diagnosed with Down's Syndrome

With modern technology, some parents are aware of their baby's diagnosis before birth. Others only find out at or after birth. If a baby is born with a disability, it is normally a terrible shock for the parents and a period of grieving inevitably follows. In her book, Coping With Down's Syndrome (Sheldon Press, 2004), Fiona Marshall explains the stages of grief and how fresh hope can follow.

Shock and Denial and Down's Syndrome

Whether the diagnosis is before or after birth, the initial reaction is shock. This is usually followed closely by denial. The combined effect is a sense of numbness and emotional overload. Dreams for the child are shattered and parents examine the infant carefully, hoping doctors have made a mistake. Tell-tale features of Down's Syndrome are explained away and emotions fluctuate wildly as the truth sinks in.

Fear and Anger and Down's Syndrome

Once the diagnosis is accepted, the parents move onto the next stage which is a combination of fear and anger. During this phase, they research Down's Syndrome and find out everything they can about the condition and what can be done to help their child. Common questions asked at this time include the following:

• How will the baby look when he is older?
• What will the child be capable of?
• What will friends and family think?
• What about schooling?
• What health issues does the child have?
• Why did this happen?
• How much will it cost to look after this baby?

Fear of the future mingles with anger at why this has happened to them. This can be a time of emotional conflict between partners as they come to terms with the change in their lives.

Guilt and Ambivalent Feelings and Down's Syndrome

Guilt is a normal part of parenthood but is often magnified when a child is born with a disability. There are a number of reasons for guilt but ambivalent feelings towards the child is a big one. Natural parental love mingles with sorrow that their child will not be classed as normal and guilt at wishing he hadn't been born with Down's Syndrome. Regrets at not aborting the child may also enter the minds of some parents, causing even more guilt.

It is often comforting for parents to talk to other parents with Down's Syndrome offspring and hear their stories and meet their children. In spite of their disabilities, people with Down's Syndrome can live satisfying productive lives and are often a joy to their parents and family.

The cycle of grief can be a long one and the stages of shock and denial, fear and anger, as well as guilt and ambivalent feelings may be revisited several times, even overlapping occasionally. This can cause the occasional emotional meltdown. It helps to realise that this is a normal reaction and that things will improve. There is life after Down's Syndrome and it can be a good, happy one.