For New Parents : New Parent Pack

Baby in colourful ring

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  0333 121 2300 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
    • Your Questions Answered
    • 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 0333 121 2300. 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


Some health conditions are more common in children with Down’s syndrome and it is important that your baby is screened for these. Make sure that you have a copy of the Personal Child Health Record (PCHR) insert for babies born with Down’s syndrome. This contains information about health screening, child development and weight and growth charts. Call us on 0333 1212 300 if you have not been given a copy. Our Helpline can also answer your health questions and suggest resources which might be useful. Anything we can’t answer we will refer to the UK Down’s Syndrome Medical Interest Group (DSMIG). If your baby has a heart condition, take a look at the website of the Down’s Heart Group.

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.

For full details see the research page for this study

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