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Tanni Grey-Thompson is considered one of the most successful disabled athletes in the UK. The 51-year-old paralympian was born with spina bifida – a condition when a baby’s spine and spinal cord doesn’t develop properly in the womb, causing a gap in the spine.
In a UK first in 2019, doctors used keyhole surgery to successfully repair the spine of a baby with spina bifida while it was still inside the womb.
Tanni revealed at the time her parents would “probably have terminated the pregnancy” If they had known about her disability.
She said terminating a disabled baby is a “complicated issue”.
Speaking to Gareth Lewis on BBC Radio Wales, the Cardiff-born sports star said: “When I was born there weren’t the diagnostics for spina bifida.
“My mum had a really open conversation with me even when I was quite young, and she said they probably would have terminated the pregnancy if they’d known.”
The NHS goes into more detail about what spina bifida is: “Spina bifida is a type of neural tube defect. The neural tube is the structure that eventually develops into the baby’s brain and spinal cord.
“The neural tube starts to form in early pregnancy and closes about 4 weeks after conception.
“In spina bifida, part of the neural tube does not develop or close properly, leading to defects in the spinal cord and bones of the spine (vertebrae).
“It’s not known what causes spina bifida, but a lack of folic acid before and in the early stages of pregnancy is a significant risk factor.”
Most people with spina bifida are able to have surgery to close the opening in the spine.
But the nervous system will usually already have been damaged, and can lead to problems such as:
- Weakness or total paralysis of the legs
- Bowel incontinence and urinary incontinence
- Loss of skin sensation in the legs and around the bottom – the child is unable to feel hot or cold, which can lead to accidental injury
Spina bifida is usually detected during the mid-pregnancy anomaly scan – something offered to all pregnant women between 18 and 21 weeks of pregnancy.
If tests confirm the baby has spina bifida, the implications will be discussed.
The NHS explains: “This will include a discussion about the possible problems associated with the condition, the treatment and support your child may need if you decide to continue with the pregnancy, and what your options are regarding ending the pregnancy, if that’s your choice.”
Treatments for the symptoms or conditions associated with spina bifida include surgery soon after birth to close the opening in the spine and treat hydrocephalus and therapies to help make day-to-day life easier and improve independence, such as physiotherapy and occupational therapy.
Assistive devices and mobility equipment, such as a wheelchair, or walking aids and treatments for bowel and urinary problems can also help.
The health body adds: “With the right treatment and support, many children with spina bifida survive well into adulthood.
“It can be a challenging condition to live with, but many adults with spina bifida are able to lead independent and fulfilling lives.”
If you or your child has spina bifida, your clinical team will pass information about you or your child on to the National Congenital Anomaly and Rare Disease Registration Service (NCARDRS).
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