Heart Buddies – Positive About Down Syndrome

Down Syndrome UK provides information and support to new and expectant parents of a little one with Down syndrome.

We have amazing online support for our families, we know how important it is for them to have access to accurate contemporary information and so provide our book #NobodyToldMe the truth about Down syndrome to families and literature to maternity units.

We also have online early development groups for our preschoolers, baby Makaton signing courses for new parents and Makaton training for members’ nurseries/childminders.

Visit our main website for more information on training and events

We believe every parent should receive the best possible care and support.

We believe the arrival of every baby with Down syndrome should be celebrated.

We believe every child with Down syndrome should be given every opportunity to flourish and thrive.

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Does your baby with Down syndrome need heart surgery?

If so, PADS Heart Buddies are here to virtually support you from initial hospital appointments and scans through to surgery and recovery. We will match you with one or two Heart Buddies, based on your child’s condition and cardiac hospital. Your Heart Buddy will be on hand to offer understanding and support as you negotiate this overwhelming and difficult time. Your Heart Buddy will be able to give advice and share their experiences so you feel better prepared.

Join our facebook group below to be guided how to request a Heart Buddy.

Contact: r ozie.haines@downsyndromeuk.co.uk

Useful resources
PADS The Lived Experience: Heart Surgery Stories, sets out a number of heart surgery experiences written by parents for parents and includes some top tips and useful links.
Our Book: #NobodyToldMe the truth about Down syndrome

We have a closed group on Facebook where we welcome new parents.

If you are a new mum, dad, friend or relative and you want to find out more about Down syndrome, if you have a question, or maybe just want a chat, please get in touch, we’d be happy to help. Whilst everyone’s experiences are unique, we’ve all been where you are before.

We’d love to hear from you

Across the UK there are many active groups with parents and children of all ages who would love to help you to navigate your way along this journey. If you would like to be put in touch with people living in your area, let us know where you are and we will send you details.

Want to know more?

Do jump over to our social media where we publish stories most days sharing an insight into our lives.

Provides a pack to a new or expectant parent including #NobodyToldMe and a congratulations card!

Provides a pack to raise awareness about Down syndrome and promote inclusion in a nursery.

Provides counselling to a new or expectant parent.

Pays for a new parent to access a 6 weeks Makaton baby signing course.

Provides resources and training to a maternity unit for a year.