What Parents Should Know about Down Syndrome & Heart Defects
Down Syndrome & Heart Defects
Around half of babies born with Down Syndrome will also be born with a congenital heart defect.
As a parent, this can be scary to hear, however, the outlook for children born with both Down Syndrome and a heart defect is increasingly positive, with children going on to live healthy, happy lives.
Why is Down Syndrome associated with heart defects?
Down Syndrome is associated with heart defects due to genetics and the extra 21st chromosome that children with Down Syndrome have.
The gene Dyrk1a, on the 21st chromosome, has been identified as the gene that causes heart defects in children with Down Syndrome. This additional gene reduces the activity of the genes for cell division in the development of the heart, therefore resulting in a heart defect.
What are the heart problems associated with Down Syndrome?
There are a few different types of congenital heart defects that are associated with Down Syndrome, including:
- Atrioventricular Septal Defect (AVSD)
- Ventricular Septal Defect
- Tetralogy of Fallot
- Persistent Ductus Arteriosus
You can find out more about these conditions and how they affect the heart by reading our dedicated guide on Down Syndrome and congenital heart defects.

What parents need to know about Down Syndrome and heart defects
As a parent, it is normal to have questions about your child and how both Down Syndrome and a heart defect will affect their lives.
Survival rates of children with Down Syndrome and heart defects
Timely diagnosis and the right treatment have both led to significant improvements in the survival rate and life expectancy of children born with Down Syndrome and a heart defect.
It’s worth bearing in mind that the treatment for the heart defect will depend on the type of condition your child has. Some may require surgery, whilst others may only need medication if the defect is small.
The outlook now for babies born with Down Syndrome and a heart defect is very positive, with the vast majority of babies having treatable conditions, allowing them to live happy, healthy lives.
Living a normal life with Down Syndrome and heart defects
Many children who have Down Syndrome and a heart defect will go on to live full, active lives provided they maintain a healthy lifestyle.
This means children will be able to attend school, go on holiday and participate in sports just like any other child.
Support for children with heart defects
Depending on the severity of the condition, it is not uncommon for parents to need some form of support with their child. This is completely normal and it allows yourself and your partner to have a well deserved break and additional support.
At Lagan’s Foundation, we can provide you and your family with specialist respite care and short break services to give you a well deserved rest, whilst also providing the essential care and attention your child needs.
Ongoing care for children with heart defects
As a child with Down Syndrome and a heart defect grows, it is likely that they will need some form of specialist care from a cardiologist to ensure that any repairs from surgery are stable and healing correctly.
Your child may also need to have regular check-ups with a doctor to ensure they are maintaining a healthy weight and are growing and developing as they should be.