Could I have saved my baby all this?

Julia Suslak's was a textbook pregnancy until she went into premature labour at 29 weeks. Had she known the signs could she have better protected one of her twins? Liz Hunt reports

When Julia Suslak became pregnant for the first time at the age of 34, she did not want any surprises. She immersed herself in reading about every aspect of foetal development, labour and birth. Approaching the pregnancy as she would a workplace project, Mrs Suslak proceeded through the library of books she had acquired, studying the diagrams and matching the changes in her own body, while imagining the changes in her baby's.

Her first surprise came at 12 weeks when she found out she was having twins. "It was," she recalls, "a very pleasant discovery, to see them there on the scan - there was no history in my family or my husband's of twins." She adjusted her reading material to include the sections on twin births, and resumed what was a textbook pregnancy at every level.

Julia's second surprise was more subtle and decidedly less pleasant. She went into premature labour at 29 weeks, but was oblivious to the mild symptoms associated with it, and as a result was admitted to hospital only in the latest stages. She gave birth to a girl, Anne, who is strong and healthy, and a boy, Jack, who is brain-damaged, physically handicapped and blind.

Even now, four years later, there is a sense of bewilderment in Julia's voice as she describes the abrupt end to her pregnancy. And there will always be the question hanging over her for which there is no absolute answer: are Jack's disabilities a direct consequence of her premature labour, which she failed to recognise?

She has gone over and over it in her mind and knows there is nothing to be gained from the "if onlys" or the feelings of guilt. Jack and Anne are too demanding of their parents' energy and time to allow this self- indulgence. But Mrs Suslak is convinced of one thing - that despite the plethora of books, videos, and courses for the new mothers-to-be, there is something missing from pregnancy education: the signs, symptoms and risks of premature labour. The UK has one of the highest rates of premature birth in Europe, and each year 40,000 babies are born too early. The first National Pregnancy Week, which begins on 2 September, will focus on the problem, with an international conference at St Thomas's Hospital in London.

"Everything is geared towards a full-term, 40-week pregnancy," Mrs Suslak says. "I used to ask, 'When will I know if I am in labour?' and everyone said, 'Oh, you can't miss it.' Well that is probably true at 35 weeks on, but earlier in pregnancy there are more subtle changes. Premature labour is something of a mystery. We just don't know why it starts. It is as if it comes on by stealth, and the least we can do is be explicit about what a woman should watch out for."

Lucilla Poston, professor of foetal medicine at Guy's and St Thomas's Trust, which is pioneering research into the causes and prevention of premature labour, agrees. "We tell all our mothers-to-be to be alert for contractions, and lower abdominal pain. But often women don't realise they are contracting; it may be just a mild, period-like pain."

Julia Suslak conceived early in 1992, a planned pregnancy which had delighted her and her husband, Nick. She suffered dreadfully from morning sickness, which persisted throughout the day for the first three months, and lost half a stone from her slight frame. But at 14 weeks, the sickness stopped. Julia began to put on weight and apart from the fact that she felt very tired, all the medical signs were that this was a normal twin pregnancy. She continued working as a product manager for a drugs company but "slowed down considerably", and built regular rest periods into her day.

"I was very careful. I don't smoke, I didn't drink, and I made sure I wasn't rushing around like I usually did. I'd planned to go on working to 36 weeks but I was getting so tired that I stopped at 29," she says. "I knew that twin pregnancies often don't go to 40 weeks, so from about week 35 I planned to be on the alert for symptoms."

She was just four days in to her maternity leave and 29 weeks pregnant when she experienced a small, thickish vaginal discharge, and developed some mild pains in her back. "It was exactly the kind of pain I'd had before when I ate something that disagreed with me. Rather like indigestion," Mrs Suslak says. "I went to the hairdresser's and walked around. I'd had a consultant's appointment the week before and everything had been fine. In fact, I was more concerned about what he would do if I went to 42 weeks, when would he induce?"

Unfortunately, there was no question of that. When the pain became so severe that she was in no doubt she was in labour, Julia was rushed to hospital in Hemel Hempstead. "It was almost over," she says. "I was seven centimetres dilated." It certainly would have been all over if the doctors had not decided to arrest labour temporarily - though they knew they could not do this indefinitely - so that they could administer steroid drugs to help the babies' lungs to mature and reduce the chances of breathing difficulties.

Julia Suslak was then transferred to the Luton and Dunstable NHS Trust Hospital for the birth of the twins, with Anne weighing in at just 2lb 10oz, and Jack at 3lb 2oz. The babies were weak, but gave no immediate cause for concern, but then at three days doctors discovered that Jack had suffered a brain haemorrhage some time after birth,probably due to the fragility of his blood vessels.

This is not uncommon in premature babies and, initially, Jack seemed to be making good progress, but at two weeks he was diagnosed with water on the brain (hydrocephalus), as a consequence of the blocked and damaged blood vessels. Emergency surgery to relieve the pressure and fit a shunt to drain excess fluid was carried out at the Westminster Children's Hospital in London.

Jack's problems did not end there. At five months he began suffering infantile spasms - rather like epileptic fits - and doctors later diagnosed a condition known as cerebral blindness. Jack's eyes are perfect, but at times he displays no response to visual stimuli, and at other times it is very weak and fluctuating.

Today four-year-old Jack, who is cared for at the Suslaks' home in St Albans, has severe cerebral palsy. He cannot sit or walk, and is unable to support his head to any great extent. He cannot speak because of problems with muscle development, although he has perfect hearing. However, the personality that was evident in the first few days of his life is still there, and becoming stronger.

"He was calmer from the beginning, more contented than Anne, who was livelier and very demanding," Mrs Suslak says. "They are very fond of each other and they have a good relationship. She will talk to him, sing and entertain him. Sometimes she asks me, 'Why can't Jack do this or that?' and I tell her he was poorly when he was born."

The Suslaks accept that Jack will never be normal and that as Anne gets older, her brother's disabilities will only be emphasised by her good health. But when you have a disabled child there is no point asking why, Mrs Suslak says.

She warns other women, those who are pregnant or planning pregnancy, whether they fall into a high-risk category or not, to watch for changes in their bodies, however subtle. "Women should not be worried about appearing neurotic about their pregnancies. They should be alert to the possibility of early labour. It is remarkably easy to miss, even for doctors. It is not that I feel that doctors should have told me about it, more that I didn't ask the right questions. I'll just never know if it could have made a difference."

Tommy's Campaign, a national charity which funds research into causes of premature birth, miscarriage and stillbirth, is co-sponsor of National Pregnancy Week, which runs from 2-8 September. For more information, ring 0171-620 0188.

CAUSES AND CONSEQUENCES OF PREMATURITY

Premature labour: about one in 14-15 babies is born too soon in the UK each year (more than 40,000), and prematurity accounts for more than 60 per cent of all neonatal deaths.

Prematurity is defined as the occurrence of rapid contractions and dilatation of the cervix before the pregnancy has reached full term. If this occurs before 28 weeks, the baby's chances of surviving are very small. Between 28 and 34 weeks, survival is more likely but the risk of handicap is considerable. After 34 weeks, with good neonatal care most babies will thrive with no obvious health problems.

Causes: in about one-third of all cases of premature labour this is unknown; another third are due to high blood pressure, which leads to a need for a Caesarean section, and a third are probably due to an infection, known as bacterial vaginosis.

Bacterial vaginosis develops when the normal bacterial flora of the vagina, lactobacillus, is replaced by a combination of different bacteria. Some of these may ascend into the uterus and are thought to trigger premature labour. The infection can be treated successfully if identified early enough, and some doctors say all pregnant women should be tested as a routine part of antenatal care.

Risks: with modern obstetric care the risks to the mother are minimal, but for the child, the consequences of prematurity may be severe, including cerebral palsy, deafness, blindness, respiratory problems, and early death.

Signs and symptoms: lower abdominal pain, period-like cramps, contractions (may be mild), unusual vaginal discharge. High levels of a protein known as fibronectin in the vagina are indicative of a fourfold rise in the risk of premature labour. Trials in the US have confirmed the usefulness of this test in high-risk pregnancies, and a British trial is under way at St Thomas's Hospital under Professor Poston. Fibronectin acts as a "glue", sticking foetal and maternal membranes close together. If it starts to appear in the vagina (detectable by a swab), it may indicate problems to come.