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Babies with disabilities: Information and support

Finding out your baby may have a disability can be a shock. Learn more about sources of information and support for parents expecting babies with disabilities.

Being told there is a possibility that your growing baby may have a medical condition, disability or genetic disorder is very difficult news to hear, and you are likely to experience a range of difficult emotions. Waiting for the results of tests or a diagnosis can be agonising.

This article covers:

What happens if screening results show a potential problem?

Preparing for appointments

Further testing

Non-invasive prenatal diagnosis (NIPD) or non-invasive prenatal testing (NIPT)

Obtaining a diagnosis

Getting support

Babies with disabilities: birth and beyond

Further information

 

What happens if screening results show a potential problem?

If antenatal screening results suggest there's a chance your baby may have a medical condition, genetic disorder or disability, your consultant may:

  • refer you to a specialist
  • provide clear, relevant information on what the diagnosis means for the rest of your pregnancy, birth and beyond
  • provide materials for you to read
  • tell you where to go for more help and support and to connect with other parents who have gone on to give birth to a baby with a disability.

Your baby may need to be born prematurely, and you may need to give birth in a special care unit (neonatal intensive care unit).

You may find it helpful to talk to other parents, and find out more about your baby’s possible disability or condition and what support may be available to you. If you want to, you may be able to meet a special care nurse, or talk to parents who have had special care babies or babies with disabilities. There are lots of resources online too – see further information below.

Preparing for appointments

If you have an antenatal appointment coming up, think in advance of any questions you want to ask about your baby’s potential disability. To help you remember you could write a list of questions and take this with you. You can also take someone with you if you need support.

Questions you might ask include:

  • What happens next? Do I come back and see you?
  • Do you have any written information?
  • Can I check that I’ve understood what you said?

You are also entitled to ask for a second opinion, and support to obtain one.

Further testing

Specialists may recommend or arrange more antenatal tests related to health or development to aid diagnosis or assessment. These tests are designed to:

  • confirm or rule out certain conditions
  • explain physical differences, disease, developmental problems or unusual symptoms.

Parents need be assured that no unnecessary tests will be carried out. You have the right to ask:

  • what the tests are for
  • why they are being done
  • what they are likely to reveal.

This will help you make more informed choices and decisions.

Non-invasive prenatal diagnosis (NIPD) or non-invasive prenatal testing (NIPT)

In November 2016, following a clinical recommendation by the UK National Screening Committee, a non-invasive prenatal test for Down’s, Edwards’ and Patau’s syndromes, was approved.

From 2018, the NHS will offer women a non-invasive prenatal test (NIPT) screening test as an alternative to the invasive tests. The main advantages of NIPT are that it can be carried out much earlier in pregnancy compared to current tests and that the procedure does not carry any risk of miscarriage. The test only requires a blood test from mum, rather than having to take a sample directly from the womb as in other types of prenatal diagnosis, such as chorionic villus sampling (CVS) or amniocentesis.

Women can get false positive results though and it is likely that invasive testing will still be required to confirm a positive NIPT result. However, by introducing NIPT the number of women being offered and taking up the invasive test is likely to fall significantly.

There are currently private providers who offer NIPT (you may have heard of the Harmony Test, for example).

Obtaining a diagnosis 

Antenatal tests and screening may lead to a diagnosis of a particular condition, genetic disorder or disability. Parents may deal with this very difficult period in several different ways. They may experience denial, anger, guilt, shock or a mixture of emotions.

Often, initial feelings of shock, fear or denial can progress to guilt and even anger. 'Why me?' is a very common response to a diagnosis. This is a natural response to a new and frightening situation, and it's a phase which does pass, and eventually (with some specialist support), parents can move on to a more practical state of mind. 

Getting support

Establishing an open, honest and supportive way of communicating with a partner or support person may be difficult at the beginning, but is important. The way you communicate with each other will be a strong factor in determining how you cope in the long term additional needs your child may have.

Family and friends may be a great source of support. Although they may not have exactly the same experience as you, they'll be able to help you with the practical everyday things that may be forgotten, both when a new diagnosis is made, and when you are attending appointments before and after the baby is born. They could help with the shopping or look after your other children or simply be there for a chat. Any practical support you can get from family and friends will relieve some of the tension and stresses you may be feeling.

Babies with disabilities: birth and beyond

The paediatrician at the hospital will be able to tell you about your child’s condition and possible treatment. If it’s a rare condition (for example a rare chromosome disorder) the paediatrician may refer you to a specialist. The paediatrician will be able to answer most of your questions. They will then write a report and send it to your family doctor (GP).

You should be given contact details of someone who can answer any questions that you have after your first discussion with the paediatrician. This could be a meeting with another doctor or specialist at the hospital, your family doctor or a health visitor. A follow-up meeting should also be arranged.

You will also be offered a social services assessment to work out what extra support you will need during birth and beyond. 

The Early Support Programme (NHS) is for the families and carers of babies and children under five years of age with disabilities. The programme:

  • allows families to co-ordinate the support they receive from health, education and social care professionals and organisations
  • helps parents and carers have more involvement in the care of their child and to organise future plans
  • offers training courses for parents and families.

There are also many general and condition-specific support organisation which offer help. 

Further information

NCT's helpline offers practical and emotional support in all areas of pregnancy, birth and early parenthood: 0300 330 0700. We also offer antenatal courses which are a great way to find out more about birth, labour and life with a new baby.

Mencap supports the 1.4 million people with a learning disability in the UK and their families and carers. Mencap fights to change laws and improve services and access to education, employment and leisure facilities, supporting thousands of people with a learning disability to live their lives the way they want.  

The Newlife Foundation for children with disabilities produces a booklet on awaiting diagnosis and also runs a telephone helpline: 0800 902 0095 (Monday to Friday 9.30am - 5pm).

Contact a Family provides information on diagnosis

NHS Choices provides information on caring for a child with disabilities, parent support, complex needs and other children: 

NHS Carers Direct - Early Support Programme is for parents of children with disabilities under five. 

You can request a social services assessment to work out what extra support you will need during birth and beyond. 

Antenatal Results and Choices is a national charity that provides information to expectant and bereaved parents throughout and after the antenatal screening and testing process. Telephone helpline: 0845 077 2290

Best Beginnings: Small Wonders project aims to provide a free DVD to all parents of babies born sick or premature.

Cerebra offers an information and support service for parents, carers and others involved with any child with a brain related condition (brain injuries, neurological disorders, mental disabilities, developmental problems). 

Genetic Alliance UK is a national charity of patient organisations supporting all those affected by genetic disorders. 

The Down’s Syndrome Association offers information and resources for parents of children with Down's syndrome and parents expecting a baby with Down's syndrome.

The Sickle Cell Society provides information, counselling and caring for those with Sickle Cell disorders and their families. 

Shine is the new name for the Association for Spina Bifida and Hydrocephalus.

The Cystic Fibrosis Trust has a helpline: 0300 373 1000.

SOFT is the Support Organisation for Trisomy 13/18 and related disorders.