What is Down's syndrome and how does it affect children? Find out more in our article.
What is Down’s syndrome?
Down’s syndrome is a genetic difference caused by an extra chromosome in a person’s cells (Sherman et al, 2007). In most cases, it isn't inherited. It's simply the result of a one-off genetic change in the sperm or egg.
Is anyone more likely to have a baby with Down’s syndrome?
No, babies with Down’s syndrome are born in every country to parents of all ages, races, religions and backgrounds (Sherman et al, 2007).
There's a small chance of having a baby with Down syndrome in any pregnancy, with the likelihood increasing with the age of the mother (Sherman et al, 2007; Coppede, 2016; NHS, 2017).
A woman who is 20 has about a 1 in 1,500 chance of having a baby with Down's syndrome, while a woman who is 40 has about a 1 in 100 chance (NHS Direct Wales, 2019).
How does Down’s syndrome affect children’s health?
Children with Down’s syndrome will be more prone to some common health conditions like respiratory and gastrointestinal infections (Malt et al, 2013). It's important to say that your child might not suffer from any of these medical conditions or might only experience a few.
Like the rest of society, people with Down’s syndrome benefit from medical advancements and are now living longer, healthier lives (NICHD, 2018). For example, routine heart surgery means that the small number of babies who require surgery do very well and are home within a week or two (Evans et al, 2014).
Through improvement in education, research and therapies, children and adults with Down’s syndrome live full, rewarding and increasingly independent lives (Brown et al, 2001).
How can Down’s syndrome affect my child’s mental and physical development?
People with Down’s syndrome have some level of learning disability. Most children with Down’s syndrome take a bit longer to reach developmental milestones, such as walking and talking (Malak et al, 2015). But with the right support, most will meet the usual childhood milestones and make good progress at a mainstream school (Kent et al 1999).
You could try a number of things to help your child’s development, see our article on the support and information available to you.
How does Down’s syndrome affect education?
Most children with Down’s syndrome enjoy a mainstream education in their local nurseries or schools. Like all children, individual needs differ, and they will require varying levels of support in education (Department for Education, 2010; NHS, 2017).
You may feel a special school will be best for your child. It will help to visit some mainstream and special schools in your local area and talk to the staff about how they would meet your child's educational needs (NHS, 2017).
What support is there for parents and families?
It's natural for parents to sometimes worry about their pregnancy and baby. Having a baby with Down’s syndrome might initially bring some extra concerns but there is lots of support from midwives, paediatricians and therapists. You will also be entitled to financial assistance.
Local and online support groups are here to help you too. They can help you to share the highs and lows of raising children with Down’s syndrome. Read more in our article about the support and information available to you.
Try to remember, you're not alone.
This page was last reviewed in July 2019.
Our support line offers practical and emotional support with feeding your baby and general enquiries for parents, members and volunteers: 0300 330 0700.
We also offer antenatal courses which are a great way to find out more about birth, labour and life with a new baby.
Make friends with other parents-to-be and new parents in your local area for support and friendship by seeing what NCT activities are happening nearby.
Down’s Syndrome Association is a charity that provides information, support and advice to people with Down’s syndrome and their families. They also have information on affiliated local support groups.
Mencap is a charity supporting people with learning disabilities.
Positive About Down Syndrome shares real-life stories of other parents and what having a child with Down’s syndrome means to them as a family. They can put you in touch with local support groups and families with a child or young person with Down’s syndrome.
There are many online support groups that can also offer support. If you are pregnant and had a high chance/positive result there is a closed Facebook page exclusively for those in your situation.
If you have recently had a baby with Down’s syndrome a warm welcome awaits you on Positive about Down’s syndrome's page.
Brown R, Taylor J, Matthews B. (2001) Quality of life - ageing and Down syndrome. Downs syndrome Research and Practice. 6(3), 111-116. Available at: https://library.down-syndrome.org/en-gb/research-practice/06/3/quality-life-ageing-down-syndrome/ [Accessed 12th July 2019]
Coppede F. (2016) Risk factors for Down syndrome. Archives Toxicology. 90(12): 2917-2929. Available at: https://www.ncbi.nlm.nih.gov/pubmed/27600794 [Accessed 12th July 2019]
Down’s Syndrome Association. (2019) Available at: https://www.downs-syndrome.org.uk/ [Accessed 12th July 2019]
Eunice Kennedy Shriver National Institute of Child Health and Health Development, National Institute of Health. (2018) Down syndrome: research activities and scientific advances. Available at: https://www.nichd.nih.gov/health/topics/down/researchinfo/activities [Accessed 12th July 2019]
Evans JM, Dharmar M, Meierhenry E, Marcin JP, Raff GW. Association between Down syndrome and in-hospital death among children undergoing surgery for congenital heart disease: a US population-based study. Circulation: Cardiovascular Quality and Outcomes. 2014; 7(3): 445-452. Available at: https://www.ncbi.nlm.nih.gov/pubmed/24755908 [Accessed 12th July 2019]
Guralnick MJ. (2011). Why early intervention works: a systems perspective. Infants and Young Children. 24:6-28. Available at: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3083071/ [Accessed 12th July 2019]
Kent L, Evans J, Paul M, Sharp M. (1999) Comorbidity of autistic spectrum disorders in children with Down syndrome. Developmental Medicine & Child Neurology. 41:153-158. Available at: https://www.ncbi.nlm.nih.gov/pubmed/10210247 [Accessed 12th July 2019]
Kumin L. (2006) Speech intelligibility and childhood verbal apraxia in children with Down syndrome. Downs Syndrome Research and Practice. 10(1):10-22. Available at: https://www.ncbi.nlm.nih.gov/pubmed/16869369 [Accessed 12th July 2019]
Mahoney G, Perales F, Wiggers B, Herman B. (2006) Responsive Teaching: early intervention for children with Down syndrome and other disabilities. Down syndrome Research and Practice. 11(1):18-28. Available at: https://www.ncbi.nlm.nih.gov/pubmed/17048806 [Accessed 12th July 2019]
Malt EA, Dahl RC, Haugsand TM, Ulvestad IH, Emilsen NM, Hansen B, Davidsen EM. (2013) Health and disease in adults with Down syndrome. Tidsskr Nor Laegeforen. 133(3):290-294. Available at: https://www.ncbi.nlm.nih.gov/pubmed/23381164 [Accessed 12th July 2019]
NHS Direct Wales. (2019) Down's syndrome. Available at: https://www.nhsdirect.wales.nhs.uk/encyclopaedia/d/article/downssyndrome/
Positive about Down syndrome. (2019) Available at: https://positiveaboutdownsyndrome.co.uk/ [Accessed 12th July 2019]
Sherman SL, Allen EG, Bean LH, Freeman SB. (2007) Epidemiology of Down syndrome. Mental Retardation and Developmental Disabilities Research Reviews. 13: 221-227. Available at: https://www.ncbi.nlm.nih.gov/pubmed/17910090 [Accessed 12th July 2019]
Wu J, Morris JK. (2013) The population prevalence of Down’s syndrome in England and Wales in 2011. European Journal of Human Genetics. 21(9):1016-1019. Available at: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3746270/ [Accessed 12th July 2019]
Wu J, Morris JK. (2013) Trends in maternal age distribution and the live birth prevalence of Down’s syndrome in England and Wales: 1938-2010. European Journal of Human Genetics. 21(9):943-947. Available at: https://www.ncbi.nlm.nih.gov/pubmed/23361224/ [Accessed 12th July 2019]