Caring for a child with Down's syndrome can bring about many different challenges. However, like any child, with love and support they can flourish and enjoy their life.

As a parent or carer, it can help to understand Down's syndrome in babies and children, as well as their individual healthcare needs. This guide aims to help you get started.

What is Down's syndrome?

Down’s syndrome is a genetic condition, rather than a disease. People with Down's syndrome are born with 47 chromosomes, instead of the usual 46. Because they have copies of chromosome 21, the condition is sometimes also called Trisomy 21.

One in 1,000 babies born in the UK will have Down's syndrome, equating to around 750 babies with Down's syndrome each year. Currently, there are approximately 40,000 people in the UK with the condition.

What causes Down's syndrome?

Down's syndrome develops during pregnancy, often at the moment the baby is conceived. The cell divides differently (what’s called non-disjunction) and a sperm or egg cell ends up with a mirror of chromosome 21.

The chances of this happening go up with the age of the mother: from one in 1,400 for a 20-year-old, to one in 30 for a 45-year-old.

That being said, Down's syndrome is, of course, no one’s fault and can affect kids born to parents of all ages and ethnicities.

What’s the life expectancy for Down's syndrome?

People with Down's syndrome are living longer and healthier lives than ever before. Today, the average person with Down's syndrome has a life expectancy of 60 years of age, compared to 15 years in the 1950s. That’s thanks to medical advances and changing attitudes about disability.

How can you tell if a baby has Down's syndrome?

During pregnancy, you can get a screening for Down's syndrome to know the likelihood of the baby being diagnosed at birth. Screening tests include non-invasive prenatal testing (NIPT) and a first trimester screening test between 10 and 14 weeks of pregnancy, which is combined with looking for other genetic conditions.

If you choose to have the test, you will have a blood sample taken. At the scan, the fluid at the back of the baby's neck is measured to determine the "nuchal translucency". Your age and the information from these 2 tests are used to work out the chance of the baby having Down's syndrome. 

Obtaining a nuchal translucency measurement depends on the position of the baby and is not always possible. If this is the case, you will be offered a different blood screening test, called the quadruple test, when you're 14 to 20 weeks pregnant. The screening test will not tell you whether your baby does or does not have Down's, Edwards' or Patau's syndromes – it will tell you if you have a higher or lower chance of having a baby with one of these conditions.

If you have a lower-chance result, you will not be offered a further test. If you have a higher-chance result, you will be offered a diagnostic test. This might be chorionic villus sampling (CVS) or amniocentesis. Your GP will be able to explain the results – and help you understand the next steps.

Your doctor can also diagnose Down's syndrome after birth, based on your baby’s physical features and a blood test to confirm.

What happens next?

For some parents, it can be a shock to learn their child has Down's syndrome. But it usually doesn’t take long to adjust and plan for various early intervention appointments, medical care and support services.

Your little one may have specific healthcare needs, so speak with your doctor about seeing an occupational therapist, speech therapist, psychologist, physiotherapist and/or social worker. It can also be really helpful to  join a local support group, to connect and share with other families who have a child with Down’s syndrome.

Throughout your child’s life – especially during transitions such as starting and leaving school – there might be many ups and downs. They could need help managing health problems and social situations, developing communication and life skills, or learning balance and motor coordination.

Ongoing medical and emotional support can help make these moments a little easier.

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Emotional well-being

Living through the pandemic has been especially difficult for people who have Down's syndrome and learning disabilities. For some, feelings of isolation have been magnified and many of the strategies suggested to help us cope with stress are not accessible to people who have a learning disability. 

You may find the following video from the Down's Syndrome Association, featuring people who have Down's syndrome talking about what helps them to relax, helpful in finding new ways to help your child relax:

https://youtu.be/2IxdFNdajyw

Caring for your child

Like all kids, children with Down's syndrome thrive when given care, love and support. While certain skills and key milestones such as walking and talking can take them longer to grasp, or require support, they still need to be acknowledged as a unique, whole person and be treated the same as their siblings and peers.

We are always looking to support those caring and providing care for MedicAlert members, whether it be loved ones or paid carers. This is why we have two specific service elements dedicated for carers:

• Carer ID - Available in 2 designs, this ID highlights that the wearer cares for someone who may be vulnerable and links to the members MedicAlert account, so they're known about and provided with care should you have an emergency.
• Emergency Care Plan - We know that many MedicAlert members have carers, who worry about what might happen should they have an accident. This form can be stored on the members MedicAlert account and will help you to plan for the unexpected so the person you care for receives appropriate and continuous care.

DOs and DON’Ts

What help is needed is different for each person and at different ages or life stages. You can try these things to help with their development.

DO

• praise them when they learn something new.

• speak clearly and calmly so they can learn from you.

• play, sing songs and read books together to help with sounds and words.

• try showing them how to do something instead of just giving instructions – this can be easier to follow.

• try ways to help them communicate such as Signalong, Makaton or PECS.

• try to set routines so they feel more settled – for example, for getting up and at mealtimes.

• encourage them to be healthy and active – find activities on the Down's Syndrome Association DSActive website. 

• look out for changes in mood or behaviour – they may not be able to tell you something's wrong or they're unwell.

• take them for regular hearing, eyesight and health checks.

DON’T

• talk down to them – treat them like anyone their age.

• just talk to parents or carers, talk directly to people with Down's syndrome.

• use outdated and offensive language when talking to people with Down's syndrome – see the Down's Syndrome Association language guide.

With encouragement and support, your child can enjoy their life, studies and being part of the community. And, as they do, a MedicAlert membership and ID offers 24/7 protection. It communicates their condition to first responders in an emergency, with instant access to their online health record. So, wherever life takes them, they’re always in safe hands.

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References and further reading

https://www.nhs.uk/conditions/downs-syndrome/

http://www.downs-syndrome.org.uk/about/pre-natal-faqs/

https://www.nhs.uk/pregnancy/your-pregnancy-care/screening-for-downs-edwards-pataus-syndrome

https://www.gov.uk/government/publications/covid-19-guidance-for-the-public-on-mental-health-and-wellbeing/guidance-for-the-public-on-the-mental-health-and-wellbeing-aspects-of-coronavirus-covid-19#people-with-a-learning-disability