Ending a pregnancy for fetal abnormality

Finding out that you’re pregnant and that there really is a tiny baby growing inside you is exciting and exhilarating.  It may be daunting too - what kind of mother will you be - how will the baby affect you and your life?  For most women the experience is overwhelmingly positive – they are setting out on a new experience that they know will change their lives. Understandably, very few parents give much thought to whether or not the baby will be healthy.  

This collection looks at what happens to women (and some men) whose feelings of happiness about the pregnancy were suddenly overturned.  They go for a scan expecting to be reassured that their baby is healthy, but then they catch sight of concern in the sonographer’s face or sense a change in atmosphere.  When they heard the phrase ‘Your baby might have a problem’ many women said that time stood still.

Finding out about the baby’s abnormality – it could be spina bifida, cystic fibrosis, Down’s, Edwards’ or Patau’s syndrome, it could be a heart or brain malformation, it could be limb deficiencies – will be deeply upsetting.  Deciding to end the pregnancy made some of those we interviewed question their deepest beliefs and their humanity.  Some parents explained the termination had ended the baby’s suffering and pain  - others wanted their baby to have a good ‘quality of life’ - many talked about the long-term demands a baby’s disability would have on them and their other children.  Some knew they wouldn’t have coped. 

Most people took part in this project because they wanted to end the taboo of termination – they wanted to talk freely about the experience and the baby they lost - and they want others to know what having a termination for fetal abnormality was really like.  They want to stop other people judging them for what was a painful and intensely difficult decision. 

See how parents describe – in some cases quite graphically – what the termination really involved and how they were cared for by many different health professionals.  They talk about saying goodbye to the baby, about organising funerals, about choosing special poems and songs to commemorate the baby’s short life. 

They talk about how they coped after the termination, and how for many of them the best therapy is not to forget the baby and ‘move on’ but to recognise that the baby existed and that he or she will always be part of them and their families.

Interview 35: And the doctor, because it was a doctor rather than just a sonographer or whatever the correct term is, was -, was scanning my wife and she hovered over the heart of the baby and said, “oh there's the heart we'll come back to that.” And as soon as, as soon as she said those words, both of us thought like well what's wrong.

Interview 13: They were unable to give any sort of idea as to the severity which made it very difficult to actually make -, we weren't making a decision based upon anything other than this is what we think will happen. This is what will likely happen. So I found that quite difficult and kept thinking well maybe it will be okay.

Interview 06

Mother: And we have a daughter, and at the time, two and a half, could you cope with a dying baby, and a two and a half year old? Is it fair to her? Is it fair to us?

Father: Well, they said it might not survive the labour, or even as long as that, anyway.

Mother: And I think I'd have hated to have seen any child of mine go through any pain.

Interview 22: It was just a case of doing what we could and telling people, because I just couldn't bear that people might ring or come to our house and, and just maybe drop themselves in it and say, “oh, and how's things?” And so I just felt that I had to beat people to it.