A Stevenage mum who lost her baby daughter at 20 weeks is founding a charity to fundraise for neonatal tests to be carried out earlier during pregnancy.
A Stevenage mum who lost her baby daughter at 20 weeks has founded a charity to fundraise for neonatal tests to be carried out earlier during pregnancy.
Kylie Osborn, of Haycock Round, gave birth to daughter Darcie after she tested positive for Edwards’ syndrome and was told she was ‘incompatible with life’.
The harmony blood test, taken at 10 weeks, would have detected the devastating condition but is not available on the NHS. It costs between £500 and £700 and is deemed too expensive.
Kylie has now founded Darcie’s Wish to fund tests, support other parents and Lister Hospital – where she gave birth.
The 30-year-old said: “They test for Down’s syndrome at 12 weeks so I don’t understand why they can’t just do it at the same time rather than having to wait to see if anything is wrong at the 20-week scan.
“I was told by doctors it is because it is too expensive and there is a lack of NHS funding.”
Kylie’s 20-week scan took place in September last year, the day before she and partner Sol Jalil, 40, were due to go on holiday to Egypt.
But irregularities in the scan got them an emergency appointment the next morning when the pair were told Darcie had severe brain damage.
Edwards’ syndrome, a genetic condition also known as trisomy 18, affects around one in 3,000 to 6,000 live births.
Of those that survive to birth, around half will die within two weeks and only around one in every five will live at least three months.
The couple left the hospital devastated, and spent what should have been their holiday planning their daughter’s funeral.
On October 3, Kylie gave birth to Darcie – weighing just 263g – and then spent 48 hours with her at the Lister.
The Slimming World coach said: “When I look back on it now, it was just horrendous. I don’t know how I did it. I have had so many friends tell me they couldn’t do it – but you just do it.”
It was in between the scan and birth that Kylie founded Darcie’s Wish, hoping to stop any other parents having to live through the same nightmare.
Now, having raised £7,000, she aims to get the charity registered.
Karen Dobson, who also lost her daughter to Edwards’ syndrome, has found support in Darcie’s Wish.
She said: “I feel everyone should know about the charity. Kylie is doing so much.”
Kylie is hosting a music event at Younique Studios in Wedgewood Gate from 7.30pm this Saturday to raise more money.
A DJ and two bands will be playing throughout the night, which also includes food and a raffle.
To buy a ticket for £15 contact Kylie via www.darcieswish.co.uk.
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