Child health
Some medical issues are more common in people with Down syndrome.
In some countries, children with Down syndrome will be tested for these issues as part of their usual healthcare.
This helps professionals to find and treat any problems they may have as early as possible.
Heart.
Around half of babies born with Down syndrome will have a heart problem. Less than one in five children has a serious heart problem.
Children with Down syndrome should have a formal heart assessment including an echocardiogram in the first 6 weeks of life to look for any serious problems. This is recommended by the UK Down’s Syndrome Medical Interest Group.
Cardiac consensus statement.
We worked with heart experts from around the world to write an article about heart conditions in people with Down syndrome.
The article will help health professionals to give good care to people with Down syndrome who have heart problems.
It includes best practices in diagnosis, treatment, lifelong follow-up, and prevention of complications.
The article has been published in ‘Circulation’, a world-leading cardiovascular journal.
Eyes.
Children with Down syndrome are more likely to have problems with their eyesight. These are the same problems that any child could have.
It is important for them to have regular eye checks to find and treat any problems they may have as early as possible. This will minimise the effects of the problem.
People with Down syndrome have poor visual acuity. This means that what they see is not as detailed or clear as it is for other people. This is the case even when they are wearing glasses.
People with Down syndrome benefit from having big and bold printed materials and pictures.
Ears and hearing.
Many children with Down syndrome get glue ear. Glue ear is where the middle part of the ear canal fills up with fluid. It often improves as children grow up but can stay in some people. Glue ear can be treated with small tubes called grommets inserted into the eardrum.
People with Down syndrome may also have hyperacusis. Hyperacusis means being very sensitive to sounds. Sounds that are okay for most people might hurt or bother them.
If someone has hyperacusis, they should see an audiologist. An audiologist is a doctor who helps with hearing problems.
Ears and hearing should be checked every year to make sure ears and hearing stay healthy.
Thyroid.
People with Down syndrome are more likely to have thyroid problems.
Regular blood tests help doctors to check for thyroid problems.
Babies with Down syndrome need a blood test in the first six weeks. They also need another blood test when they turn one year old.
Children with Down syndrome should have a blood test every two years.
Sleep.
Children with Down syndrome often have trouble sleeping.
These problems can be due to behaviour or physical issues.
One physical issue is called sleep-disordered breathing, where breathing stops and starts during sleep. This is also known as sleep apnoea.
A specialist should check sleep problems to find the cause.
Coeliac disease.
Coeliac disease means your body can’t take in some parts of food. This condition is more common in people with Down syndrome.
To feel better, you need to eat food without gluten. A dietitian can help you with this.
Epilepsy.
Epileptic spasms happen in about 5% of children with Down syndrome. They usually start when the child is 3 to 6 months old. They do not happen after 12 months.
Signs of spasms include the child’s head nodding forward. The arms or legs might also move quickly, and the child could get upset.
The movements are very short, lasting less than a second. They can happen in groups, often after the child wakes up.
If you think your child is having spasms you should speak to a medical professional as soon as you can.
Neck instability.
The joints at the top of the spine and the base of the skull help us move our heads.
People with Down syndrome have stretchier ligaments. This means their joints can be looser and more flexible.
Loose joints can cause the bones in the spine to slip. If a bone slips too much, it can press on the nerves.
This slipping can happen slowly or suddenly, like in a whiplash injury. It can cause problems if not treated.
If a doctor thinks there is neck instability, they will send the person to a specialist. This could be an orthopedic surgeon or a spinal neurosurgeon.
We are working hard to make health care better.
In some places, people with Down syndrome can access the healthcare they need. In other places, they do not get any healthcare at all. This is not fair.
We are working on advocacy, training and resources to help improve healthcare systems for people with Down syndrome.
