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Children with Down syndrome

A Parents’ Guide

Introduction

Congratulations on the birth of your baby!

Enjoy getting to know your new baby, they need the same things that all babies need, love, care, food, sleep and opportunity. Every baby is unique and your baby will have characteristics of other members of your family.

Other things will happen in good time, and you will be your baby’s best representative, you know what is important for you, for them and for your family.

Your journey with your child may be different to what you expected and for some people, this may seem overwhelming at times. However there are services to support your child and your family through that journey and to enable your child achieve their fullest potential.

Services in Leeds

Health care services for children are provided by two different health organisations; the hospital team at Leeds Teaching Hospitals Trust and within the community, Leeds Community Healthcare Trust.

Community services aim to provide care in your local area of the city, so our community child health doctors (paediatrics), therapies and other health services are delivered from three ‘Hubs’, depending on the postcode of your child’s GP.

These hubs are Integrated services for Children with Additional Needs (ICAN) East, South and West.

As health professionals, our job is to work with you so you can help your child achieve the things that are important to them: you are the expert on your child and family.

Please tell us what your priorities are so that we can help you work towards your child’s goals.

An experienced paediatrician will examine your baby, undertaking the normal baby checks, making sure that your baby does not have serious health issues or a heart condition:

Genetic tests

As soon as the doctors consider that your baby may have Down syndrome they will request a blood test to confirm the diagnosis. A preliminary result is available within 2 working days (so may take longer if it is the weekend or a bank holiday) but the detailed results may take up to three weeks.

Heart scan

Your baby may have a heart scan soon after birth if the doctors are concerned that your baby has a heart disorder. However even if this is normal, your baby should see a heart specialist and have a repeat heart scan by 6 weeks. This is because babies with Down syndrome have a 40 to 60% likelihood of a having a heart condition (congenital heart disorder).

Blood tests

All children with Down syndrome will have full blood tests and blood film within the first three days, to make sure that they are not at risk of a serious blood disorder. Additional tests may be advised depending on your child’s medical needs.

New born hearing screen (offered to all new borns)

Sometimes the results are not definitive in the new-born period, however, it is really important that your baby has any recommended follow up hearing tests. We know that babies with Down syndrome have a higher incidence of hearing loss which can result in language delay.

Feeding

It is quite common for babies with Down syndrome to take some time to establish feeding. If you wish to breast feed your baby, you should do so, unless you are advised of a medical reason not to.

If your baby is having difficulty in establishing breast or bottle-feeding, the midwives and a speech therapist who specialises in feeding can support you. Some babies may go home with a naso-gastric tube (feeding tube) and may need medications to help with feeding. You can also seek support with breast feeding from your 0 to 19 specialist public health nurse.

If your baby has no immediate health issues they will be discharged home as soon as you are ready. The hospital paediatricians will request the community paediatricians and arrange to see you and your baby.

You should be provided with the specific Down syndrome inserts for your parent held child health record book (Red Book, 5th edition February 2020).

A parent’s guide to health

A parents’ guide to health services in Leeds for children with down syndrome

Which services might I be involved with?

Equipment for everyday life: Children with Down syndrome

Physiotherapy: Information for children with Down syndrome

Occupational therapy: Information for children with Down syndrome

Resources and information

Children with Down syndrome

Introduction

Congratulations on the birth of your baby!

Services in Leeds

What to expect before leaving the hospital

A parent’s guide to health

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