Liz Sewell guessed there was something wrong with her baby during an ultra-sound scan at 20 weeks of pregnancy. "I knew by the way the radiographer went quiet and did not talk us through it," she recalls.
"Eventually she said, `There is something seriously wrong with your baby.' She went to get the consultant, who told us that the baby was so seriously disabled that she could not live. She recommended a termination. This all happened within 10 minutes.
"The consultant said that if we delayed the termination, the only thing that would happen would be that the baby would be more capable of feeling pain."
The baby's brain had not developed properly and she was seriously damaged. Later it was discovered that this was the result of a rare condition, known as amniotic band sequence, in which small holes appear in the amniotic sac. These put pressure on parts of the baby, resulting in deformity.
Liz, 33, works for a childcare organisation and lives with her partner, Howard, in north-east London. When they were given the news they immediately felt very protective. "We wanted to have the baby and look after her, but the doctors made it clear that there was no chance of her living," Liz added. The couple opted for a termination, which, at that stage of pregnancy, meant that Liz would have to go through labour and deliver the baby in the normal way. "The night before, it was like being on Death Row. I knew that something I desperately did not want to happen was going to happen. I had made a decision, which I knew was the right one, but I wished that I had not had to make it. I felt myself calmly walking towards it."
But the next day, when the doctors had great difficulty in starting off Liz's labour, she began having doubts. "At that stage, I thought that maybe I should not go through with it. The hospital got two consultants, an obstetrician and a paediatrician, to come and talk to me. They also had a bereavement counsellor who was very helpful."
In the event, the delivery, at 20 weeks, took a total of two and a half days. She and Howard had called their child the Snowbaby, because she had been due in the winter. They were able to spend a lot of time with their dead child after the delivery, and although she was very badly damaged by her condition, they thought she looked beautiful.
Almost two years later the couple have an eight-month-old baby called Isabel, who was born without any problems. Liz has now become vice chair of the charity Support Around Termination for Foetal Abnormality (Satfa), which offers information and counselling to women in her position. She says: "I do not regret having been through it all. I feel that the Snowbaby is part of my life and part of my family. To me, she is my first daughter, and always will be. But it was the saddest thing that ever happened to me."
Nicola West had always assumed that a Down's Syndrome pregnancy was mainly a problem for older women - until, at 24, she discovered she was expecting a baby with Down's Syndrome.
"I felt bitter and cheated," she says. My husband and I had worked so hard to get everything right for having children. We had a lovely home and a car; I wondered why it could not have happened to someone who did not want a baby."
Nicola is now 25 and has two children: Sam, aged three, who was born before her Down's Syndrome pregnancy, and Olivia, two months.
She discovered that she was at high risk of having a Down's baby when she was given a blood test, known as the Double (see panel)."It showed that my level of risk had changed from one in 1,400 [the average for women of her age] to one in 80. They were reassuring at the hospital. They thought that the result could have been abnormal if I had got my dates wrong. But they offered me an amniocentesis anyway.
Ten days later I got a positive result. My reaction was total disbelief. I did not think it could happen to someone my age, and to someone my husband's age." Her husband, Carl, was 26 at the time.
The couple went to the hospital that afternoon to talk to the doctors. "I wanted to know how badly retarded the baby would be. They said that they did not know but that we would have to be prepared to cope with the worst scenario. In some cases, the child cannot walk or talk."
They spent a day considering what to do: the decision was more difficult because Nicola is a Roman Catholic. "That was a big issue. I was full of guilt at the idea of a termination, but I was also full of guilt for creating a baby that was not normal. I felt I had let her down."
"Some people say children with Down's Syndrome are sweet. But it's when they are 20 years old that you do not get much sympathy. I did not want to bring a baby into the world that was going to have serious problems and not be accepted. It's all very well for the Damon Hills and Dominic Lawsons of this world [both men have Down's Syndrome babies] to say how wonderful it is. They make so much money they can get help and do not have to use the council-run speech therapy units."
Nicola went into hospital the next day and had a termination. She was 20 weeks pregnant and was in labour for 24 hours; the doctors said she could see and hold the baby but she refused. The couple named her Emily. "I know that it was the kindest thing that I could have done for her, because I could not have coped."
Louise Adkins did not give it much thought when, about 16 weeks into her third pregnancy, she was offered a routine blood test to assess the risk of Down's Syndrome.
"I understood the implications of the test, but felt that as I had two healthy children, I was not really at risk," said Louise, 34, from Rugby, Warwickshire.
"But then I got a phone call from the hospital to say that they had had my blood test results and could I come up to the hospital to discuss them. I was so shocked that I was incapable of asking them anything more, though I knew they would not tell me anything on the phone.''
Louise and her husband, Paul, went to the hospital the next day and were told that they had a one in 21 chance of having a baby with Down's. Next day she had an amniocentesis to find out if the baby was affected; there was an agonising three-week wait for the results.
"I got a phone call one Tuesday afternoon asking me to come and see the consultant about the results the following Thursday. I said that I could not wait that long, but they were adamant. So I rang my GP, who said he would try and find out.
One hour later, the GP turned up on her doorstep: he had found out that the test was positive. He was "amazing", she says: he hugged her, talked to her and chatted to her two other children, Tom and Joe, aged six and four respectively.
Although more than 90 per cent of couples who find out they are expecting a Down's child choose to terminate the pregnancy, the Adkins decided that they would go ahead with it. Four a half months later, Louise gave birth to a boy whom they named Ben.
"I do not have any religious beliefs, but my husband and I had already discussed it and felt the same way. We think no one is owed a perfect, healthy child by right. Any one of us could have an accident or get ill and end up with less potential than Ben. I would not stop loving Tom or Joe if they had problems as a result of meningitis or a car accident.
"When we first made the decision, we felt very positive. But living with it during pregnancy became a lot harder: you always anticipate the worst. Seeing pensioners with their middle-aged children with Down's Syndrome was hard. I grieved for my lost future."
Ben is now 14 months old. Although behind both his brothers in development, he can crawl and "cruise" round the furniture. "We all celebrate it when he achieves something new. He is such a gorgeous little boy. Sometimes I hug him, and it makes me go cold to think that I could have been without him.
"We did what we felt was right for us and our family, but I have enormous respect for people who choose termination. Nobody does it lightly. Whatever you choose it's a hard decision."
A GUIDE TO ANTENATAL TESTS
An early ultra-sound scan at 10-12 weeks can indicate major abnormalities such as anencephaly (absence of a brain) or missing limbs, and whether the foetus has Down's Syndrome. In Down's pregnancies there are thickened areas of skin around the neck that show as a darkened line on the screen between 10 and 14 weeks.
Biochemical blood tests at 16-18 weeks include one that measures Alpha- fetoprotein (AFP): high levels may indicate spina bifida, although nine out of 10 women with raised AFP levels are not carrying an abnormal foetus. The Triple Test (also called Leeds/Barts test) measures AFP plus oestriol and human chorionic gonadotrophin: abnormal levels, taken together with the maternal age, give a risk factor for Down's Syndrome. Some hospitals offer the Double Test, which measures AFP plus one other chemical. If blood tests indicate a high risk of abnormality, diagnostic tests such as amniocentesis will be offered.
A late ultrasound scan at 16-20 weeks can detect spina bifida, hare lip and certain heart defects. How much is discovered during a scan depends partly on the skill of the operator and also the baby's position: even with the most expert operators only 50 per cent of all abnormalities can be detected although at 20 weeks nine out of 10 babies with neural tube defects such as spina bifida will be picked up.
Amniocentesis is offered to women with raised AFP levels, an abnormal Triple Test result, or who are over 35 or 40, and therefore at greater risk of having a baby with Down's Syndrome. A fine needle is inserted through the wall of the abdomen into the womb to draw out a sample of amniotic fluid for analysis. Chorionic villus sampling (CVS), in which cells from the placenta are drawn off for analysis either through the abdomen or cervix, is usually performed at 10-12 weeks.
Support Around Termination for Foetal Abnormality (Satfa), telephone 0171-631 0280.Reuse content