Health: Birth Defects

Baroness Grey-Thompson Excerpts

Wednesday 6th November 2013 Lords Chamber

[Baroness Grey-Thompson (CB)]

My Lords, I thank the noble Lord, Lord Rooker, for tabling this interesting debate. As ever, your Lordships’ Chamber gives us a wonderful opportunity to think about certain topics in more detail and to challenge ourselves and our opinions.

Until this debate was tabled I had not previously considered other methods of taking folic acid apart from the pills that were available over the counter. My first thought was that I was not sure that it was a terribly good idea—mass medication, as the noble Lord, Lord Rooker, has said. However, I thought of other areas where there is fortification, such as fluoride in the water, mentioned by my noble friend Lady Mar who raises some good points on the level of folic acid that should be taken. I came to realise that it is probably a reasonable idea if it can be done in the right way and not cause any other issues.

I felt compelled to speak because I have spina bifida—that is why I am a wheelchair user—and perhaps if the benefits of folic acid had been known when my parents were planning a family, my life might have been very different. Many of the opportunities that I have experienced are due to the fact that there was little knowledge in this area, whether it was around supplementation or various scans that are now routinely available. For me personally, it is kind of hard to regret that there was no knowledge at that time.

When I was born, my parents were told that I had spina bifida. I do not think that they really knew what it meant. There was little education and disabled people were not as visible in society as they are now. My parents were also told that if I had been born just a few years earlier, because of my condition, I would have been taken away and not fed.

My parents were also given a whole host of reasons why I had spina bifida. My mother was blamed. She was told that she had not eaten enough vegetables, even though she was virtually a vegetarian. My father was then blamed because of other family conditions or illnesses which were then a precursor. The final reason we were given was that it was more common in areas of coal mining or industry, so therefore the figures were much higher for the Welsh mining valleys, Nottingham and Newcastle. I grew up in Cardiff; I do not know whether that is good or bad.

I am very pleased that there is better knowledge today. Although everything I have read says that spina bifida was not hereditary, I and other family members were told that there could be a slightly higher incidence of the condition, and I was advised to take a double dose of folic acid. Obviously I was able to take it because my daughter was part of a planned pregnancy, but we must consider unplanned pregnancies and, indeed, women taking folic acid for the correct amount of time. When I was pregnant, it was not made that clear that it was meant to be for 12 weeks of pregnancy. I know that, in my own case, I experienced dreadful day sickness—I dreamed that it might just become morning sickness—and, as a result, I was never entirely sure of the amounts I had taken or whether it had remained in my body. I took several pills a day, just hoping that some of it would benefit me. I treated taking folic acid in the same way as I thought about my diet; I do not drink or smoke. It was about doing the best I could for my unborn child.

I read with interest the documents produced by the British Medical Association in April this year about the falling rates of spina bifida. Like my noble friend Lady Mar, I believe that part of it is about scanning and the opportunity to discuss and offer termination in a different way. That certainly was not available when I was born. Certainly, it appears that the best medical advice is that taking folic acid will contribute to preventing this condition.

This is a difficult subject to discuss because it would be so easy to move into a wider discussion on scanning and termination, but that is not what this debate is about. In a note which I received from Jackie Bland, the chief executive of Shine—the charity for people with spina bifida and hydrocephalus—she indicated that we might well have a situation where it seems many of us are more comfortable managing the occurrence of spina bifida through scanning and termination, when fortification combined with more robust public health information could reduce occurrence by up to 72%. This is really interesting.

Perhaps there is also a failure to acknowledge the extremely traumatic consequences of a late-pregnancy termination. I do not believe that termination is an easy option. I also know of several people who, knowing that they are having a child with spina bifida, have chosen to carry on. Shine’s health advisers have also said that many parents have reported a strong pressure to terminate and a sense of guilt if they choose to continue. That is a consequence of the acceptance of management by termination. We must recognise that whatever people choose, these are hard decisions that families have to take.

When I was pregnant I was asked so many times what I would do if I knew I was going to have a child with spina bifida or who would become a wheelchair user. I think that people were expecting me to give a definite, immediate answer. My response was that I would ensure that my child had the best self-propelling wheelchair on the market from the age that they were meant to be crawling. It is about managing it, and the choices that you make.

I have only one question. I was wondering, when researching this area, whether consideration had been given to including folic acid in other food products. I do not eat a lot of bread and am not planning on having another child. It is about understanding the right amount of folic acid that should be taken.

Finally, I reiterate that I am strongly in support of prevention, in the way that I support things like the seat-belt law, which had a significant impact on the rate at which people experienced traumatic spinal cord injuries, or something like cycle safety. Prevention is a positive step forward. I look forward to debating this again in the future.