During pregnancy and sometimes in the first few days after birth you may face the difficult news that your baby has a genetic disorder, or another health condition that will need to be treated and looked after, sometimes for life.

This news can take time to get used to but here’s what can help if it’s happening to you.

Emotional response

Firstly it’s common for couples to feel an array of emotions, including sadness, despair, uncertainty, anger, loss, disappointment and guilt. “These are all very natural reactions,” says counselor Gill Tyler, “because all parents have an idea of what their child will be like, and no-one ever envisages having a baby who is ill and needs special care.”

“The news that Ella had a chromosomal abnormality was devastating on a number of levels. First we had to contend with the idea that our baby wasn’t going to be ‘normal’ in the way that we had thought, and then we had to deal with the idea that we’d have to wait-and-see when it came to the extent of her physical problems and development. We wanted answers and treatment for her right away but instead we were told to take her home and be patient, something that was just so hard to do.” Jenny, 34

Your relationship

The impact on your relationship can be huge, especially if you find it hard to discuss how you’re feeling with each other, or shut down when one of you tries to talk about it. It can help to realise a couple of things:

1. Having a baby with a disorder or condition is hugely stressful and as parents it’s possible you will handle this stress very differently. Perhaps your way of coping is to research everything you can about the condition, and his is to pretend it’s not happening (or vice versa).
2. Hearing the news that your baby is ill will often be the first time you see how your partner copes with disappointment and loss and this in itself can be distressing and upsetting.

Why you need to talk about it

“My husband and I don’t talk we argue. Everything from Ben’s treatment to how to look after him at home, even to what he eats leads to a fight. It’s as if after two years of caring for our child, fighting is now the only way we can communicate with each other.” Dawn, 34, mum to two year old Ben who has Down’s Syndrome

Finding a way to talk about what’s happening is vital because having an ill child is likely to add a whole range of additional pressures on your relationship, says Gill Tyler, “Aside from adapting to new caring roles, it’s likely you will both have to think differently about your expectations of family life. You may also be faced with a range of unexpected financial pressures, alongside the natural anxiety you both will have about your child.”

Whilst some couples find these difficult issues bring them closer, others find it hard to stay connected. To help maintain your relationship, Gill suggests trying to listen to what your partner is saying even if it’s difficult to hear. You may find that you have to accept that you have different feelings and reactions, but this doesn’t mean that you can’t be supportive of each other.

“Finding out that Emily had cystic fibrosis was devastating but it’s made us ten times stronger as a couple. We are united by what we’ve been through and by the treatment and care we want for her.”Sarah, 30

What you need to know

While the stress involved in caring for a baby with an illness is considerable, make it easier on your relationship by:

• Seeking expert help if you can’t move beyond an impasse. Relate offer a free counselling service for parents. To get instant advice access the live chat area on Relate for Parents by logging on www.relateforparents.org.uk or text 60616
• Asking friends and family for help. Letting others help care for your child, will give you and your partner some much needed time to look after your own needs and work on your relationship.
• Consulting other parents in support groups can offer some much needed support and understanding. These groups, both in person and online, are available for nearly all disorders and conditions. Ask your healthcare team for information and details.