Jade Dodson, 32, and husband Mark, 31, made the tragic discovery after their 20-week scan of unborn daughter Amalie revealed something wasn't right.
They were later told their baby had a severe birth defect which would most likely leave her paralysed, brain damaged and with urinary and bowel dysfunction.
It was an incredibly difficult decision for the couple, but they eventually decided to terminate the pregnancy to "free her from inevitable pain and suffering".
Jade, from Leeds, told Mirror Online: "While it is a very difficult decision, mothers should be able to have the decision terminate their child in certain circumstances.
"Amalie would have led a difficult life if I went ahead with the pregnancy and this decision was made entirely for her. No one usually thinks about it unless they are actually faced with the decision."
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Jade and Mark got married in October 2015 and had been trying for a baby for two-and-a-half years when Jade fell pregnant.
They had already had several rounds of fertility treatment, so were delighted when they got the happy news in August last year.
But just a couple of months later they discovered their baby had myelomeningocele, the most severe form of Spina Bifida, which affects around one in 1,000 babies.
If she had continued with the pregnancy, Jade would have had to have an operations four months in – to try and reduce the damage to Amalie's brain.
This would have involved attaching a shunt to Amalie's brain, to drain excess fluid, but would have come with the risk of infection and further brain damage.
Jade said: "Of course I feel guilt which has hit me a few times, but I could feel more guilty knowing that she has not had a fulfilled life."
Under current laws, abortions can take place up to 24 weeks in pregnancy – or later in certain circumstances, for example if the mum's life is at risk.
What is Spina Bifida?
Spina Bifida is when a baby's spinal cord doesn't develop properly in the womb, causing a gap in the spine.
It's a neural tube defect – meaning it also affects the brain.
Most cases are diagnosed at the mid-pregnancy anomaly scan, between 18 and 21 weeks.
In most cases, surgery can be used to close the opening in the spine.
But the nervous system will have already been damaged, which can lead to:
- Weakness or paralysis of the legs
- Bowel and urinary incontinence
- Loss of sensation in the legs and around the bottom – the child will be unable to feel hot or cold
- Hydrocephalus, a build up of fluid on the brain, causing further damage
- Learning difficulties
Source: NHS.
It was a difficult Christmas for the couple, with Jade giving birth to Amalie on December 22 and being rushed to hospital with an infection just before New Year.
The family mourned Amalie at her funeral on January 4 and Jade describes the period as a "blur".
Jade said: "While everything is too raw with Amalie at the moment, we do still want children.
"This has been a difficult experience but it will never put us off trying to have another baby in the future."
Mark and Jade are doing the Three Peaks Challenge on what would have been Amalie's due date, April 23, in the hope of raising £5,000 towards Action Medical Research.
Jade said: "This charity is important to us as we believe that Spina Bifida could be prevented with more research."
They had never hiked before they started training for the challenge, which will take around 12 hours.
You can support them on Just Giving here.
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