Personal Child Health Record insert for babies and children with Down’s syndrome

You should have received a Personal Child Health Record (PCHR) for your baby, (sometimes called the ‘Red Book’) from your midwife or health visitor. This is a health and development record for your baby which is given to all UK parents and carers and will be the main record of your child’s health and development. You keep hold of the record book and take it along with you to each health appointment your child has so that health professionals can update it each time they see your child.

You should have also been given additional inserts for your PCHR specifically for babies born with Down’s syndrome which are produced by Down’s Syndrome Medical Interest Group, (DSMIG UK). These inserts contain details of the basic minimum health checks for your baby from now up to the age of 18 years and gives you information about health aspects and the health checks your baby will receive, alongside a specific graph to plot your baby’s growth. You can view and download this here.

If you didn’t receive a copy of the insert, your health visitor can get a copy for you from Harlow Printing Ltd, their contact details can be found here.

Our Family Support Team can also support your health visitor with information regarding development of babies with Down’s syndrome.

It is really important that you attend all the health appointments scheduled for your baby and that they receive the health checks as recommended to support their development; these appointments can also ensure that any health concerns can be picked up early and that your child gets the right support at the right time which can help you feel confident that your baby is progressing well.

Alongside the PCHR additional insert information and health checks, in Scotland there is also a national Scottish Allied Health Professionals (AHP) Pathway of Care for Children 0-3 years with Down’s Syndrome to guide you and your child’s development up to 36 months old and enables you to access specialist AHP services at the appropriate time and be signposted to appropriate interventions which support your child’s early development.

If you have any questions or would like more information about health checks or conditions associated with Down’s syndrome our Family Support Team are available to chat and provide support in relation to any aspects of your baby’s health. Please get in touch by emailing or call our helpline on 0300 030 2121.

If you have specific concerns about your baby’s health, we recommend that you contact your health visitor, GP or paediatrician in the first instance.