Coping when a premature baby has a long-term condition or disability

Common reactions

Every parent will feel differently and have different concerns, depending on their individual circumstances. There is no right or wrong way to feel. 

“When my daughter was diagnosed with cerebral palsy, my initial feelings were shock, upset, grief – all the usual things you'd expect. However, once the dust had settled, I realised it also felt like there was a weight off because we'd been waiting to see whether or not she'd be diagnosed for a while. Having the confirmation gave us some power over the situation – power to do something about it and get support in place, and with power comes a sense of control over the situation.”

Jess

Whatever your baby’s condition, it’s common to experience:

• fear about your baby’s wellbeing
• 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 for you and your baby
• anxiety about how other people may act towards your child, such as discriminating against them or bullying them
• stress at the amount of appointments, assessments and paperwork you might have to deal with
• concerns about how you’ll cope financially.

Some parents feel guilty about having thoughts like this, but they are all natural and normal. You may find it difficult to talk about how you’re feeling because you’re scared of being judged or blamed. Or sometimes it can be just too hard to talk about or you might feel like there is no-one who would understand. Try writing your feelings down if you don’t feel comfortable sharing them. Some people prefer to write a blog or diary about what they are going through. 

Finding a way to move forward

If you’re told that your baby has a long-term condition, the initial shock may leave you feeling very distressed or numb. Over time, many parents find ways to adjust to their situation and focus on accessing the support they need to meet the needs of their child. 

Each person finds their own way of adjusting. You may want to think about looking into ways to find the support you need.

For example, you might want to try:

• joining a support group
• having counselling
• talking to your healthcare team, friends or family about how you’re feeling. 

“She was still my beautiful girl, regardless of her diagnosis, and eventually I made peace with it. Now I'm focused on helping her to get stronger, make progress and also to teach her and her sisters (they're triplets) about diversity within the world.”

Jess

Talking to other parents

Parents often find it reassuring to talk to other parents with similar experiences. You may meet other parents on the baby unit or your healthcare team may have details of relevant local or online support groups where you can meet other parents.

The charity Bliss has a range of emotional and practical support. This includes an email support service, support via video call and local volunteer access. Visit the Bliss website to find out more.

You can also get peer support through the Bliss and Netmums forum is a supportive online community for parents, families or carers of babies born premature or sick.

The charity Contact provides support to all families with disabled children. It puts families in touch with one another for mutual support. 

It can also refer you to other charities that specialise in your child’s specific disability or health condition. 

Your local council may also be able to provide details of relevant groups in your area. 

Focusing on your child, not their condition

No one should be defined by their condition. Every child is different, with their own strengths and weaknesses, likes and dislikes, so try to focus on your child as an individual. Try not to compare your child to others.

Enjoy the good days. Celebrate the achievements or highs, however small. These experiences may not be what you were expecting but they’re just as important.

Looking after yourself

It isn’t easy for any new parent to find time for themselves. But getting some rest or a little time off may help you maintain your mental and emotional wellbeing. 

This doesn’t have to mean a weekend away. Doing small, simple things like having a long shower, going for a walk or having a coffee out with friends can make a difference.  

Getting professional emotional support

Sometimes it helps to talk to someone away from your friends and family. If you think this might help, you could try looking into professional counselling. This involves talking to a trained therapist who can help you find ways to deal with emotional issues.

You can get free psychological therapies, including counselling, through the NHS. Ask your GP for more information.

Counselling is also available privately, but this can be expensive. The British Association for Counselling and Psychotherapy has a list of qualified counsellors near you. 

Financial support 

Having a child with disabilities might bring extra costs that you hadn’t planned for. Your local council can provide help if you have a disabled child. Some services will be free, but your local council might ask you to contribute towards others.

If you think you might qualify for support, you can contact the social services team at your local council. Your council will also know about local support groups for carers and families with disabled children. 

You can speak to the Citizens Advice Bureau for advice about disability rights and benefits. Or visit Gov.uk for details about how your local council can provide financial help, as well as aids and adaptations, care at home and holiday play schemes.

Knowing more about your baby’s condition

Some parents find it helps to research their baby’s condition. There are lots of supportive health charities where you might be able to find advice and guidance about your baby’s individual health needs. This is a list of some organisations that may be helpful.

This is not an exhaustive list and you may be able to find other helpful organisations online or in your local area. It’s also a good idea to talk to your healthcare team as they may be able to give you more information. 

Cerebra offer an information and support service for parents, carers and others involved with any child with a brain-related condition

The Cystic Fibrosis Trust has a helpline plus information and support on any aspect of cystic fibrosis.

Down's Syndrome Association can give advice and guidance about Down’s Syndrome. .

Genetic Alliance UK is a national charity supporting people who are affected by genetic disorders.

Mencap is a charity that provides information and support to families of children with learning disabilities.

Newlife is a charity for children with disabilities. Their services include a free helpline, equipment grants and emergency equipment loans.

NHS provides information on caring for a child with disabilities.

Peeps is a charity that supports families those who have had an H.I.E. event (Hypoxic-Ischaemic Encephalopathy).

Scope is the disability equality charity in England and Wales providing practical information and emotional support.

Shine provides specialist support for anyone living with spina bifida and/or hydrocephalus, and to parents and carers.

The Sickle Cell Society provides information, counselling and care for people with sickle cell disorders and their families.

SOFT is the support organisation for trisomy 13 or 18 and related disorders.