For New Parents : New Parent Pack

Congratulations on the birth of your baby


If your baby is healthy, their needs will be just like other babies. You don’t need to be doing anything different or special at this stage. It can be difficult at first to see past the Down’s syndrome to your baby’s individual personality. Take time to listen to your new baby, get to know them and enjoy spending time with them. A loving secure environment is the most important thing that you can give your baby at this time.

New parents are sometimes concerned that they need to do something special or different to support their new baby’s development. This is very normal, but don’t be hard on yourself. Give yourself time to adjust, and spend time with your new baby. The rest can come later!

You may have lots of questions or feel rather overwhelmed by what it means to have a baby with Down’s syndrome.

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New Parents Pack

Our New Parents Pack may be able to help you answer your questions and concerns. It includes information about telling others your feelings, as well as information about Down’s syndrome, feeding your baby and about your baby’s development. Your relatives can also find out more in our Friends and Family leaflet.

  • Call  +44 (0)333 1212 300 and ask for a pack to be sent to you.
  • Download leaflets from our New Parents Pack:
    • Congratulations on the birth of your baby
    • Leaflet for Family and Friends
    • Membership application form to join the DSA
    • Benefits for Babies
    • Who we are. What we do. Why we need you.

If you have any questions or worries, or would just like a chat, please call our helpline on +44 (0)333 1212 300. Please don’t hold back; we will probably have heard your questions or worries all before from other new parents. Even if you don’t have any concerns, please still get in touch. New parents can join the Down’s Syndrome Association for free for the first year of their baby’s life, and we can send you a New Parents Pack. You can find out more about becoming a member of the Down’s Syndrome Association.

You may also like to contact your local support group. They can help you through the difficult times and also provide an opportunity to meet other parents who have children or babies with Down’s syndrome.


Health

Personal Child Health Record (PCHR) insert for babies and children who have Down’s syndrome:

The 2020 fifth edition of the PCHR insert can be downloaded here.

The PCHR (sometimes called the ‘Red Book’) is a health and development record given to all UK parents/carers at a child’s birth. The PCHR is the main record of a child’s health and development. The parent/carer keeps the PCHR, and health professionals should update the record each time the child is seen in a healthcare setting. You can find out more information about PCHRs here. 

We want to ensure babies and children are as healthy as they can be. The PCHR Insert is one of the tools that can be used to help you and health professionals ensure your child’s health is monitored properly. The PCHR Insert contains a list of basic minimum health checks for babies and children up to the age of 18 years.  Alongside the list is information about when the different health checks should be carried out.

The Insert contains information written by the UK Down Syndrome Medical Interest Group (UKDSMIG) – It includes:

  • Advice about feeding, immunisation and growth
  • Your child’s development (learning new skills)
  • Health issues
  • Growth charts (covering birth to 18 years)
  • Sources of additional help and advice.

Babies and children who have Down’s syndrome have the same needs as any child. You should take your child for routine health checks and immunisations in the usual way. However, they may have some additional health needs that could affect their growth and development. This is why they will need some extra health checks (as detailed in the PCHR insert).

Children who have Down’s syndrome tend to grow more slowly and they are often smaller in stature than other children. This is why the PCHR Insert includes growth charts specifically for children who have Down’s syndrome. Sometimes parents of babies and young children call us because they have been told by a health professional that their child is failing to thrive. In some of these cases the children are actually doing fine but alarm bells have been raised because the health professional is using a generic growth chart and not the growth chart for children who have  Down’s syndrome. Each child who has Down’s syndrome is different but generally their development is slower than that of other children. The insert has information about the usual progress of development in children who have Down’s syndrome.

You can call our Helpline (Tel: 0333 1212 300) or email us (info@downs-syndrome.org.uk) with any questions about health issues. If we are unable to answer your questions, we can seek advice from our medical advisers on your behalf. If your health enquiry is of an urgent nature, please contact your GP or the relevant health professional depending on the urgency of your enquiry.


Research: Would you like to take part in a study?

Feeding and Autoimmunity in Down’s Syndrome Evaluation Study (FADES)

We are looking for new parents willing to complete a questionnaire about their child’s feeding and health as a young baby and at six and twelve months. We will also ask about the child’s health yearly after this until the age of 5 years old

We hope the study will help us understand why children with Down’s syndrome are more likely to experience problems with their hormones and their gut, help reduce this risk and lead to the development of new treatments to help with feeding.

29.04.20 – In the light of coronavirus (Covid-19), the research team have temporarily closed their Laboratory for the FADES Study with immediate effect. FADES research will continue but with online questionnaires only, the collection of biological samples will be suspended. You can still take part in the study by filling out online questionnaires.

For full details see the research page for this study

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