Stephen’s reaction seems dramatic, but is quite typical: ‘I didn’t want to touch her, I didn’t want to pick her up. All I could think of was that there was something wrong with her heart, and I felt like she was made of glass. She wasn’t mine. That’s all I could think. She wasn’t the baby I expected to have.’

      IF YOUR BABY has been born with a disability, then you may well feel confused and resentful. More: you may feel angry, bitter, cheated. You may not even know how you feel except that you don’t feel right.

      During this sad time, there is no right or wrong way to feel. Allow yourself time to come to terms with your feelings, and don’t think that this will happen overnight.

      One of the main things you need, if you are struggling to come to terms with the child you have rather than the child you thought you were going to have, is information. The Directory at the end of this book gives details of many organisations who are there to offer you advice and support, and will help you through any difficulties, often by putting you in touch with other parents who have been through similar experiences. Other parents are often all too willing to help; they know what it is like. They know, better than anyone else, what you are going through. Make the most of them. But take it slowly …

      Mary and Vicky express their inability to see beyond their own grief and shock: ‘Yes, we needed a lot of information, but there was also so much going on, every day, that we couldn’t take all the information in.’

      ‘I wasn’t coping on any level – physically, spiritually, emotionally. And I couldn’t read a Factsheet, the words didn’t make sense.’

      Remember: Everyone needs to take the time they need. You know your needs. Take your time.

      Learning to adjust to the reality of your baby’s condition also takes time, as Stephen and Bridget discovered: ‘Sometimes I felt really protective towards her, other times, if someone had come in and asked me if I wanted her taken away, I’d have said yes. And I’d have never looked back. But they didn’t come in. And then she was mine.’

      BABIES WITH DISABILITIES

      There are some specific stages that most parents whose baby is born with a disability will go through:

      Shock:

      Nothing can prepare you for this news; expect simply to feel numb: If someone asks, you may find yourself saying, ‘I don’t know how I feel.’

      Denial:

      There are not many parents who won’t ask the doctor: ‘How can you be sure?’

      Grief:

      Many parents whose baby is born with a disability or a developmental problem find that they go through a time of sorrow and grief – just as if they were grieving for someone. And they are. Parents need time to mourn the loss of the perfect baby they dreamed of before they can whole-heartedly welcome the child they have.

      Anger:

      This is another natural reaction. The anger can be directed at anyone, including your partner and your friends, especially if your friend’s own child is healthy. You may find yourself saying, ‘Why us?’

      Guilt:

      Many parents feel guilty, even if they are told categorically it could not have been their fault. You may find yourself thinking back over the events in your pregnancy and saying, ‘What did we do wrong?’

      SHARING

      When it comes to sharing what has happened, remember:

       Most people will know very little about what has happened to your child. Be willing to explain as much as they need

       Choose a time for talking when you can talk privately and without hurry

       Have a positive attitude: it will help everyone be positive

       It may help to have a checklist to cover important points.

      ‘What was awful was never knowing what was best. Other people knew best all the time. They had experience of this, and we hadn’t. We didn’t know anything. All the time we were having to say: “Is this how you do it? Is this what you do?” I expected just to get on with it, and I couldn’t.’

      ONE PARTICULAR hurdle that parents whose child is born with a disability must face is telling others. How and when you tell people is your decision to make. Most parents, though, find that telling others as soon as possible is more helpful than not, and it is the best way to prevent misunderstandings.

      Bereavement

      IF YOUR BABY dies either just before birth (a stillbirth) or just after being born (a neonatal death) you will feel more anguish and pain than you ever thought was possible.

      Some of you who are reading this book before your baby arrives will turn past these pages, not wanting to read them. ‘It doesn’t bear thinking about.’ That would have been my reaction, too. But for some parents, they have to think about it, the hardest thing of all: a death in a place where there is no place for it, in a room where we give birth.

      It is beyond the scope of this book to support families through the loss of their baby. Only talking and specialised support can do that, and for this reason we include the names and addresses of specific organisations that can help in the Directory.

      What we can also do here is to let parents think in advance of how they might cope with the loss of their baby, and to let you know some positive ways in which you can help each other through such a difficult and distressing time.

      George speaks for many other grieving fathers: ‘People somehow expected me to be affected less than Anita. I was the one making the funeral arrangements, going to see the Registrar, all of that. It was as if I just had to get all that done and then I could go back to work and forget about it.’

      Anita expresses her own anguish: ‘I was going to be a mother…and then I wasn’t… and then I realised I was a mother, and always would be, even if I didn’t have my baby with me any more.’

      THERE ARE MANY local support groups run by and for parents who suffer a bereavement. They will allow you and your partner the opportunity to talk about how you both feel, express your feelings and grief and to share ways of coping.

      REASONS

      If you and your partner suffer a bereavement:

       Find out as much information as you want and need as to the causes. This will help you to understand and to come to terms with what has happened

       Do talk about the baby to each other. One of the saddest things about losing a baby near the time of birth is that no one else has had the chance to get to know this new little person. You know her better than anyone and can share your knowledge with each other

       Give yourself plenty of time to grieve. Do not expect to pick up the threads of life again as if nothing had happened

       Give your baby a name. This will help you to talk about her and see her as a person in her own right

       Ask for a photograph of your baby. This will help you to remember her

       Don’t blame each other – you are both angry: you have a right to be angry, but you need to find other ways of expressing that anger

       Support each other – remember that your partner has also lost a child.

TRANSITION