A NORTHWOOD family is celebrating a milestone they never thought they would see — their baby's first birthday.

Phoebe Amber Bradley has defied the odds and will turn one on Saturday (20) despite suffering from a severe form of a life-limiting genetic disorder.

Although it wasn't picked up during mum Hollie's pregnancy, when Phoebe was born at 36 weeks weighing just 4lbs there were clear signs something was wrong.

The staff at St Mary's Hospital remained very calm and reassuring, and took Phoebe into NICU.

She wasn't breathing initially, her ears were set low, she had a small mouth and claw-like clenched fists.

Physically, it looked like something was wrong, but she also had a hole in her heart and was really frail. She was diagnosed with Edwards' syndrome, also known as trisomy 18, a rare but serious genetic condition that causes a wide range of severe medical problems.

Sadly, most babies with Edwards' syndrome die before or shortly after being born, and Phoebe had the worst strain of it.

A baby with Edwards' syndrome has three copies of chromosome number 18, instead of two, and the presence of this extra chromosome in cells severely disrupts normal development.

There was nothing more that could be done medically, and Phoebe was taken home at 11 days old.

She was surrounded by love and attention from mum Hollie, dad Peter and big brother Blake, with support from the wider family, and friends.

Hollie said: "Taking her home was quite scary. We did not expect her to last long and every day was a bonus."

However, Phoebe defied expectations and despite a few scares and several hospital visits, the family is now looking forward to her first birthday party.

"We didn't think we would get there, but she recovers quite well. She's a little fighter.

"She is permanently on oxygen and we have to look ahead in days, weeks and months, not years.

"If she got a cold, flu or a virus it could kill her.

"In February she got a chest infection and stopped breathing, and she had to have CPR at home while we waited for an ambulance.

"But we wouldn’t change her for the world and having her has enhanced our life.

"She has made us do so many things we would have never done or experienced. She has given us the purest love.

"Everyone says she has attitude and is feisty. She laughs and smiles all the time though. She is such a happy girl."

It was expected that Phoebe would be deaf, but she wears a special headband and can hear.

Phoebe was Christened in hospital shortly after being born and attended her parents' wedding in September — hastily arranged because they wanted Phoebe to be there.

The family wish to thank NICU and the children’s ward doctors, nurses and community, plus physio and occupational therapy, and speech and language.

They have also been helped by Well Child Nurse, the respite team based at Mountbatten, North Cross, Rainbow Trust, Layla’s Trust, Kissypuppy and Naomi House.

More information on Edwards' syndrome can be found at soft.org.uk

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