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Down's syndrome Q&As

Published by Bupa's health information team, September 2008.

Answers to questions about Down's syndrome

This section contains answers to common questions about this topic. Questions have been suggested by health professionals, website feedback and requests via email. This section will expand over time.

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Down's syndrome

 

My baby's got Down's syndrome. Will I still be able to breastfeed?

Answer

Yes, it's very likely that your baby will be able to breastfeed, although it may take slightly longer than usual. You can get extra help from a breastfeeding counsellor if you need it.

Explanation

Your baby may be able to breastfeed straight away. However, some babies with Down's syndrome don't breastfeed fully at first. This is because babies with Down's syndrome often have poor muscle tone. This means they are unable to tense their muscles as much as other babies, which can make it harder for them to suck.

Your baby may also find it slightly harder to stay attached to your breast. To help your baby feed, support his/her chin with your free hand. Babies get tired quite easily so try to give feeds little and often. If you still find it difficult to breastfeed, speak to your midwife or health visitor. He or she may refer you to your local National Childbirth Trust coordinator, who may be able to put you in touch with a breastfeeding counsellor.

A small number of babies with Down's syndrome have other conditions associated with it such as digestive disorders. These can affect feeding. Many of these babies can breastfeed after they are treated for the condition, although it may take a while. There are many advantages of breastfeeding, and it may help you to bond with your baby. However, it doesn't suit everyone.

Sources

  • Learning about intellectual disabilities and health. St George's University of London. www.intellectualdisability.info, accessed 20 June 2008
  • Down's syndrome: a new parents guide. Down's Syndrome Association. www.downs-syndrome.org.uk, accessed 20 June 2008
  • Ask the speech and language therapist. Down's Syndrome Association. www.downs-syndrome.org.uk, accessed 20 July 2008
  • Van Cleve SN, Cohen WI. Part I: Clinical practice guidelines for children with Down's syndrome from birth to 12 years. J Pediatr Health Care 2006; 20(1):47-54
  • Simon C, Everitt H, Kendrick T. Oxford Handbook of General Practice. 2nd ed. Oxford: Oxford University Press, 2006
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Can people with Down's syndrome have children?

Answer

People with Down's syndrome may be able to have children, but very few do. It's important to teach your child about safe sex and birth control.

Explanation

Women with Down's syndrome may still be able to have children although it's harder for them to conceive. Men with Down's syndrome also have reduced fertility. There is evidence that about 30 women with Down's syndrome have become pregnant and at least one man with Down's syndrome has been a father.

The possibility of having children raises a number of issues for people with Down's syndrome. They are likely to find it harder to cope with the responsibility and added costs of parenthood without a lot of support. In a couple where one parent has Down's syndrome, there is a one in two to three chance that the baby will also have the condition. The risk of a baby having Down's syndrome increases further if both parents have the condition.

When your child becomes a teenager, he/she will need to learn about the usual changes of puberty. Most will want to have a boyfriend or girlfriend. It can help to teach your child honestly about the possibility of sexual relationships early in life. Explain that sex can be part of a close, adult relationship and that there is a chance of pregnancy. Talk to your child about the need for contraception and how to protect against sexually transmitted infections.

Sources

  • Down syndrome: topic overview. PeaceHealth. www.peacehealth.org, accessed 21 June 2008
  • Learning about intellectual disabilities and health. St George's University of London. www.intellectualdisability.info, accessed 20 June 2008
  • Down's syndrome: a new parents guide. Down's Syndrome Association. www.downs-syndrome.org.uk, accessed 20 June 2008
  • Ask the speech and language therapist. Down's Syndrome Association. www.downs-syndrome.org.uk, accessed 20 July 2008
  • Van Cleve SN, Cannon S, Cohen WI. Part II: Clinical practice guidelines for adolescents and young adults with Down syndrome: 12 to 21 years. J Pediatr Health Care 2006; 20(3):198-205
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Is there a cure for Down's syndrome?

Answer

No, Down's syndrome is a lifelong condition. However, by making the most of the support available, you can help your child become more independent and lead a fulfilling life.

Explanation

Down's syndrome is caused by a problem with an individual's genetic material, and this can't be reversed. However, people with Down's syndrome have access to much more support and better medical care today than they did in the past.

You can get support for your baby with from your:

  • midwife or health visitor
  • paediatrician (a doctor specialising in children's health)
  • social worker
  • child development centre community team for learning disabilities

For children with Down's syndrome, you can find help from your:

  • GP
  • speech therapist
  • occupational therapist
  • physiotherapist
  • social worker
  • dietitian
  • early intervention programme

People with Down's syndrome are at risk of a range of other conditions, such as cataracts and respiratory infections. Your GP can check for these conditions and they can usually be treated.

With the right support and medical attention, people with Down's syndrome can go to school and college, have a job and lead full lives.

Sources

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Is it my fault that my baby has Down's syndrome?

Answer

No, there isn't any evidence that anything parents do before or during pregnancy can cause Down's syndrome.

Explanation

Some mothers are concerned that they may have caused Down's syndrome because of something they did during pregnancy. However, there is no evidence that any foods, pollution or actions are linked to your baby having Down's syndrome. You shouldn't feel that you are to blame.

Down's syndrome is a result of your baby's cells having extra genetic material. This happens at the very beginning of pregnancy when the sperm and egg meet to form the embryo.

It's not fully understood what causes this to happen. However, the likelihood of having a child with Down's syndrome is higher if:

  • the mother is over 35
  • the father is over 40
  • the parents already have a child with Down's syndrome

Sources

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How will Down's syndrome affect my child's development?

Answer

Your child can learn to walk, talk and become toilet trained like other children, although it will probably take him/her longer.

Explanation

Children with Down's syndrome take longer than other children to reach the basic developmental milestones. These include turning over, sitting, standing, walking and talking.

Like any other child, there is a wide range of ability among children with Down's syndrome.

The Down's Syndrome Association says, as a general guide, your child is likely to:

  • smile by about two months
  • roll over between four and 22 months
  • sit alone and crawl between six and 28 months
  • say his/her first words between nine and 31 months
  • walk between 12 and 65 months (average 24 months)

As they grow into adults, children with Down's syndrome carry on learning, just like everyone else. You may be surprised at how much your child learns to do.

Sources

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What can I do to help my child reach his/her full potential?

Answer

With patience and encouragement, you can help your child master many basic skills. There are also lots of early intervention programmes that offer support in all areas of child development.

Explanation

All children develop at different rates. There are some simple things you can do to help your child learn the basic skills.

You can help your baby learn to talk by speaking about the world around him/her. Look at your baby at the same time and show and name the objects you're talking about. Playing with your child can help to strengthen muscles and prepare him/her for walking.

Help your child learn to feed him/herself by sitting down together at mealtimes. Take this in small steps, starting by getting your child to pick up things with his/her fingers.

Try to make time each day to teach your child how to get dressed and help him/her practise doing this.

Make the most of the support available. Early intervention programmes can offer speech therapy and physiotherapy as well as home-based teaching programmes. They also give you the opportunity to meet other families who are facing the same challenges so you can support each other.

Sources

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This information was published by Bupa's health information team and is based on reputable sources of medical evidence. It has been peer reviewed by Bupa doctors. The content is intended for general information only and does not replace the need for personal advice from a qualified health professional.

Publication date: September 2008

 

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