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Ariana 31/10/2014 – 01/11/2014

We have set up a charity in memory of our baby girl Ariana, who only lived for a precious 37 hours before growing her angel wings.

On Friday 31 October 2014 at 10:11am, Scot and Claire welcomed Ariana Hope Barlow into the world weighing 4lbs 5.5oz.

They had known throughout the pregnancy that Ariana was going to be poorly, however as they had declined invasive testing, they were unsure of how poorly Ariana would really be.

Ariana's scans had displayed a few markers for a chromosomal abnormality such as Downs or Edwards' Syndrome.

Edwards' Syndrome is a genetic condition also known as Trisomy 18 which means that a baby is born with three copies of chromosome 18 as opposed to two copies. This causes a severe disruption in the baby's normal course of development. This is a rare condition that affects only one in up to 6000 live births and is life limiting.

Ariana's little heart had a large VSD (a hole between the two lower chambers), one kidney, a small cerebellum (which affects the learning development), overlapping fingers and clenchedfists and was very small for her gestational age.

Despite all of Ariana's health problems, she was perfect. 

All of the problems that Ariana had individually weren't a cause for concern and can be fixed. However, the biggest problem were her apnea episodes where her brain would forget to tell her to breathe. Each time this happened, Ariana deteriorated.

But she was a fighter.

It was confirmed 12 hours after her birth, that Scot and Claire's beautiful daughter had Edwards' Syndrome.

Ariana's mummy and daddy spent a magical 37 hours with their daughter before she grew her angel wings. And they would relive all the stress, pain and suffering just to see her again.

Ariana touched the lives of every person she met in her little life and because of her, many student nurses, doctors, paediatricians and anaesthetists were all on site to learn how to deliver and care for a special baby which means that they received valuable training into the treatment of a child with a genetic condition.

It is because of Ariana's strength that her parents have decided to keep her memory alive by setting up a charity in her name to help fund equipment for local maternity units in the Leicestershire and Warwickshire areas so maternity staff can continue to care for newborns. And parents - especially those with poorly babies - get the same fantastic support that Scot and Claire received.

SOFT Child


Condition: T18
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