One in every 1,000 pregnancies in Britain is affected by a spine or brain defect such as spina bifida. Actress Ruth Madeley, who herself has the condition, looks at how things have changed since she was born, 31 years ago, and the groundbreaking surgery that is now possible while babies are still in the womb.
Spina bifida has always been part of my life and something that I have accepted – but it has never been something that I have fully understood.
Things are very different now to when Mum was pregnant with me.
She wasn’t given much hope about what I’d be able to do – or even if I’d survive. Now parents-to-be are given much more information – and there’s the possibility surgery could improve their babies’ lives’
I never thought I would have the opportunity to sit in and watch that revolutionary surgery being carried out – on a baby with spina bifida before it was even born – and see, in that very moment, the bravery of the mother who willingly underwent this huge procedure to ultimately help her child.
In the operating theatre, the number of people wearing scrubs was more than I had ever anticipated – the team was made up of over two dozen medics – and outside the theatre doors, the mother was saying goodbye to her husband before she and her baby were put under anaesthetic.
Watching the couple hug one another made it hit home that the mother wasn’t just putting her own life in someone else’s hands but her unborn baby’s life too.
‘Close to home’
The surgeons’ aim was to close the open hole in the baby’s spine and push the exposed nerves back inside the membrane around the spinal cord – and each member of this extraordinary team was responsible for ultimately keeping both mum and baby alive during this major operation.
A successful operation would help to alleviate some of the additional health complications that can come with spina bifida, such as hydrocephalus (where water accumulates on the brain), bladder, bowel and kidney problems and severe walking difficulties or paralysis.
My experience of surgery has always been when I have been the one on the operating table; so, to be able to witness this ground-breaking surgery was somewhat surreal – and very close to home for me personally.
I could only imagine what my own mum would have done in this position, if such surgery had been available when she was carrying me.
For any parent, finding out that their child has spina bifida must be extremely challenging and worrying.
My mum’s experience from her obstetrician 31 years ago was very negative when they discovered I had spina bifida just six weeks before I was born.
They told my mum that I would never walk and that I would have many other health complications – not offering my family much hope for me at all.
Termination was never an option for my mum but, met with such negativity from professionals, she was naturally very worried about my health and whether I would live or not.
‘Giving babies a chance’
However, with the great medical and scientific advancements that have happened since I was born, many women expecting a child with spina bifida today should now have a much more positive and hopeful outlook for their babies.
This surgery is not about eliminating spina bifida or saying it should not exist – it is about giving more unborn babies who are diagnosed with spina bifida the chance to reduce the other symptoms that come with this disability, while still being able to grow in the womb.
There is no cure – babies who have the foetal surgery will still have spina bifida when they are born – but their physical strength and overall health are improved.
So surely, having such ground-breaking surgery available for more people can only be a positive thing.
Spina bifida is part of my DNA and something that I fully embrace in my life.
Without it, I wouldn’t be in the position I am to have created this documentary.
I feel privileged to be able to share my own personal journey of learning more about foetal surgery, medical science and what spina bifida means in today’s world.
Horizon: Spina Bifida & Me is on BBC Two at 21:00 on Thursday, 26 July.