Edwards' syndrome
Edwards' syndrome (also known as trisomy 18) is a genetic condition that begins to affect babies when they're in the womb, and continues to impact their health throughout their life. It's a rare but serious condition.
In the UK, around 3 in every 10,000 births are affected by Edwards’ syndrome.
What is Edwards' syndrome?
When a baby is conceived (made), they inherit genetic material from both their parents. This genetic material is called a chromosome.
Humans normally have 23 pairs of chromosomes. In each pair, 1 of the chromosomes is inherited from the mother and 1 is inherited from the father.
If a baby has Edwards' syndrome, they have inherited an extra copy of chromosome 18. This extra copy can be present in some or all of the baby's cells and can lead to health problems for the baby.
There are 3 different forms of Edwards' syndrome:
Why does Edwards' syndrome happen?
Most cases result from a random change in the egg or sperm in healthy parents. This change is not caused by anything the parents did before or during pregnancy.
Effects of Edwards' syndrome on pregnancy
Effects of Edwards' syndrome on babies
If your baby is affected by Edwards' syndrome, it is likely they will have associated health conditions (other conditions often found in babies with Edwards' syndrome). Some of these may be serious. Exactly how your baby is affected will depend on the form of Edwards' syndrome they have.
Living with Edwards' syndrome
Each child is unique, and Edwards’ syndrome will affect each child differently. Like all children they'll have their own personalities, likes and dislikes, and things that make them who they are.
Babies with full form Edwards' syndrome usually have a low birthweight and are considered "medically fragile". This means they are at high risk of infections and complications that require treatment in hospital. They may also:
- have difficulty feeding and may need fed by a tube
- have difficulty breathing and have apnoea (pauses in their breathing)
Despite their complex needs, children with Edwards’ syndrome can make progress with their development, although slowly.
Many children are reported to be able to communicate their needs, show awareness of surroundings, and some can sit and stand supported. There are also cases of older children attending school.
Feedback from many parents suggests that children with Edwards' syndrome have a good quality of life and are valued members of the family.
Further information and support
You can find out more information about Edwards’ syndrome, including stories from parents of a child with the syndrome, at SOFT UK (Support Organisation for Trisomy 13/ 18)
