Every year more than 700,000 women in the UK become pregnant and, as a result of antenatal testing, over 35000 will be told that their baby is at risk of a serious abnormality.
Fiona was told that her first baby had a very high risk of Down’s syndrome. Here she explains how the news affected her and why she would choose not to have antenatal tests in future pregnancies.
Fiona’s pregnancy wasn’t planned. After many miscarriages, years of heartache, numerous tests and the final agonising diagnosis of ‘unexplained infertility’, she had finally accepted that she would never have children.
Until a few months later when she missed a period. “I was convinced I was going through the menopause,” she explains. “I decided to do a pregnancy test because I couldn’t bear the thought that I was getting old. When it was positive, I took another 5 before I believed I really was pregnant.”
At the time Fiona was living in Oman where her husband was working, so by the time she returned to the UK and registered with a maternity service she was already 10 weeks pregnant. “Up until that point everything was fab,” she says. “I had no morning sickness, no cravings and other than feeling tired, I was thoroughly enjoying being pregnant with this little miracle.”
Stress in the system
Unfortunately for Fiona, she felt that as soon as she was ‘in the system’, her pregnancy became more stressful. “Suddenly I was being told not to do this or eat this or touch this,” she recalls. “My little miracle had suddenly become a focal point of stress! And then I was told I had to book in immediately for a Nuchal scan as it had to be done before 12 weeks
and ‘at my age’ I should really have it.”
Prior to this, Fiona had only had a ‘fleeting’ thought that her age - just turned forty – could be a factor in the health of her baby. But as a nurse and an aunty to seven under 10s she knew the Nuchal scan gave a good indication of the risk of Down’s syndrome. “Of course I was aware of the risks associated with Down’s and age,” she admits, “but until then I was blissfully content that my baby was healthy.
Now I was being forced to face the facts that he could have any number of abnormalities. It was as if I was being told content pregnancies are not allowed.”
Tests, results and risks
Fiona had her Nuchal scan 12 weeks into her pregnancy. Officially called the nuchal fold translucency test, it uses ultrasound to measure the amount of fluid between two layers of skin behind the baby’s neck. Babies with Down’s syndrome have more fluid between these folds.
The measurement is then fed into a computer, along with the mother’s age, the baby’s heart rate and any blood test results. From this, the computer will calculate the risk factor of the unborn baby having Down’s. Fiona remembers being told the results of the Nuchal scan during the test itself. “The sonographer said quite calmly that my result was one
in 68, and that it meant my baby had a very high risk of having Down’s syndrome. He said that I would need to speak with the midwife about my options and then he left. “Initially I was very calm. I listened to the midwife talk about CVS and amniocentesis, I took the leaflets she handed me and walked out to my car where I sat and cried for half an hour.
Even driving home the tears kept coming. All of a sudden I wasn’t celebrating a miracle pregnancy, I was mourning the perfect baby I had always dreamed of having, even through all the miscarriages and the infertility.
“My baby hadn’t even been diagnosed as having Down’s but the risk factor was so high that I still went through the whole grieving process, asking ’Why me?’ and ‘Haven’t I been through enough already?’ “My sister put me in touch with ARC, the Antenatal Results and Choices charity which helps parents who have had bad test results and need advice or just information.
They were great and explained all my choices and options. “The turning point came the following week when my midwife asked me if I’d decided what I wanted to do and I spontaneously replied ‘Nothing’.
At that point I realised that it didn’t matter what the test results were, it wouldn’t affect my decisions regarding the pregnancy so why put myself through even more heartache?”
The longest months
“Once I’d made my mind up, I tried to go back to the ‘content’ pregnancy I’d been enjoying prior to the Nuchal scan. Not surprisingly I couldn’t - that had been lost to me and I wasn’t getting it back.
Even if I’d gone ahead with the CVS or the amniocentesis, I would never have been sure if the results were correct, no matter what they said. ”That made me angry. I lost count of the number of times I wished I hadn’t had the scan.
I could have remained in blissful ignorance, enjoyed my pregnancy like all first time mums should. “Instead I found myself constantly calling my sister – who has had six babies – to ask if this was normal or that wasn’t normal, or if she thought that such-and-such indicated a lesser likelihood of Down’s. “But despite all the uncertainty and worry, I knew 2 things for sure. Firstly, this was my baby and I loved him. And secondly, if I was ever pregnant again I would not have the Nuchal scan.”
In January, Fiona delivered 7lb 2oz Jack Toby by caesarean section. ”He was lying in a transverse breech position so I elected for a caesarean section on the advice of the midwifery team.
When he was handed to me he was perfect. I forgot all about the Down’s, I was absolutely mesmerised by him and I couldn’t stop crying at how beautiful he was. “When the doctors checked him and confirmed that he didn’t have Down’s Syndrome I was obviously relieved but also angry that my pregnancy had been filled with so much unnecessary worry and fear and stress, all of which is bad for the unborn baby.
“Later when he was asleep in my arms, I uncurled his fingers and looked at the creases in his hand as I knew these were often absent in Down’s babies. I had to keep reminding myself that after everything he was my perfect little miracle.” Jack is now 3 months old and Fiona is suffering from mild postnatal depression, which she believes is in part due to the
stress she suffered throughout her pregnancy. “But I only have to look at him, or see him smile to know how lucky I am to be his mum.”
The professional view
Professor Charles H. Rodeck, Head of Department, Obstetrics and Gynaecology at the Royal Free and University College London Medical School says prenatal screening and diagnosis have become a fundamental part of antenatal care.
“All parents now have to consider whether to have such tests or not. This unfortunately can cause anxiety and in particular lead to difficulties if the tests are ‘positive’ i.e. indicate that the baby may have an abnormality.
Further decisions may then have to be made about other tests, or whether to see other specialists. Ultimately, the heartbreaking question of whether to continue with the pregnancy may have to be faced.” And Vicki Allenach, Midwifery and Women’s Health Adviser at the Royal College of Nursing says, ”It is crucial that parents and health care professionals are well informed about the choices available to women in relation to antenatal screening.”
Both recommend ARC as an excellent organisation for parents who want advice on antenatal