Advice for Parents

Early testing

Some parents choose to undergo antenatal tests which can assess the likelihood of having a baby with Down’s syndrome; in some cases, if the probability is high and there are risks for the mother, the parents may choose to terminate the pregnancy; the consultant or healthcare team will discuss and explain all the available options with the parents prior to making a final decision.

Discovering your baby has Down’s syndrome

While early testing during pregnancy can determine the likelihood of giving birth to a baby with Down’s syndrome, most parents find out their baby has Down’s syndrome shortly after the birth of their child. This can be an extremely challenging time for new parents and can be a source of considerable anxiety, worry and heartache. Most parents panic when they hear about Down’s syndrome because they know very little about it; in reality, although it may seem daunting there is a great deal of help, information and support available to help you cope and make the most of the relationship with your child.

Most children born with Down’s syndrome are generally healthy but they may have difficulties which will require additional parental attention. The most important thing is to try and build a strong relationship with your child and to understand the nature of the condition; this will help you to control your emotions and keep your cool during frustrating times. Down’s syndrome children are commonly extremely loving and affectionate and most thrive on a loving and secure relationship with their parents and relatives.

Understanding your child

In terms of practical measures, having a thorough understanding of your child’s condition will help you to create a safe and suitable environment in which they may grow and develop. Some may have difficulties with mobility, hearing or sight and these issues will need to be addressed; it may be that you will need to alter the setting you previously inhabited, in order to cater for your child’s needs. Children with Down’s syndrome are automatically assigned a care pathway in order to monitor their progress and address any concerns; this will ensure your child has the best possible care and help you to establish a good relationship with the medical team who will take care of your child.

Education

In terms of education, Down’s syndrome affects the intellectual capacity of an individual and therefore it is often beneficial to register your child with a specialist school where they can receive specially designed education and build strong bonds with children who suffer from similar learning difficulties. Many parents worry that their child will be bullied by other children or stared at by people who pass them in the street; there is a lot of advice and support on how to ensure this doesn’t happen available online or via the telephone from charities such as the Down’s Syndrome Association and the Down’s Syndrome Educational Trust.

Taking care of yourself

Caring for a child with Down’s syndrome can be stressful and physically and mentally exhausting; try to allow yourself periods of rest and escape in order to keep yourself healthy, this may involve asking a friend or relative to babysit for a short period of time for example. Support for parents is also available from the charities listed above. If you are struggling to cope with the idea of having a child with Down’s syndrome it may be beneficial to undertake a course of counselling; your GP will be able to offer advice and support on this matter.