Published April 2012, next review April 2015

Looking after yourself while your premature baby is in hospital

Coping if you find out about health problems or disability

Finding out that your premature baby is likely to have a long-term health problem or disability is extremely difficult and you will need time to work through your emotions.

Common reactions

Whatever your baby’s condition, you may experience feelings such as:

  • fear for your baby’s well-being
  • worry about how you’re going to cope
  • anger and a sense of injustice or unfairness
  • grief for the loss of the future you had imagined
  • anxiety about misunderstanding, stigma or bullying
  • stress at the number of appointments, and assessments and the amount of paperwork you will have to deal with.

Staying positive about your child’s future

With some conditions, the extent of the problem only becomes apparent as the baby develops over the years, which can lead to a great deal of uncertainty about what the future may hold.

Some parents find themselves constantly comparing their disabled baby with other ‘normal’ babies. It can help to keep in mind that a baby who has a disability in one area may be extremely adept in many others, and with the right support may have just as many opportunities as her peers.

Discovering your coping mechanism

If you are told that your baby has a long-term condition, the initial shock may leave you feeling very distressed or numb. With time, many parents find ways to adjust to their situation and channel their hurt into determination to protect their baby and fight for her needs to be met. Each person finds their own way of adjusting – for example, by:

  • joining a support group
  • finding a positive role model
  • having counselling
  • sharing the load with health professionals or friends.

We’ve compiled a list of sources of support for you.

Find more ideas to help you cope.

In this section

You can also read about

The following organisations can give you more information about the topics covered in this section.


On this page

Common reactions

Staying positive about your child's future

Discovering your coping mechanism

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Feedback on health information


The Early Support programme is designed to help parents in contact with many different agencies to co-ordinate services.

‘Now, I feel more compassion for people who are going through difficult times. Friends have had horrible things happen to them, and I think I have a greater understanding that life isn’t just fabulous all the time. I suppose we’re a bit more decent. And I’m very grateful.’



If your child has ongoing health problems, you may be entitled to Disability Living Allowance or Carer’s Allowance. For information, contact the Benefit Enquiry Line on 0800 882 200 or go to the Directgov website.