Bristol couple: Looking ahead to life with our little battler

Bringing your newborn baby home for the first time is what every mum and dad-to-be dreams of.

But for Kylee and Steven John, walking through the doors of their Yate home on Monday with their baby Erin was a day of celebration, but also of mourning.

For Mrs John, 26, gave birth to identical twins Erin and Sian on December 16, 2008, 24-weeks into her pregnancy. Sadly just 10 weeks later, the young couple had to make the toughest decision of their lives, to turn off the ventilator keeping their smallest twin, Sian, alive, and watch her die in their arms.

For the past 11 months, Erin, who was born weighing just 1lb, has been in intensive care and the high dependency unit at Southmead Hospital, fighting for her life.

Mr John and his wife told the Evening Post about the most horrific 11 months of their lives, but also about their joy at finally having Erin home for Steven's 27th birthday yesterday.

Mrs John, of Hatherley, said: "We've given Erin 'Sian' as a middle name. She will always remember her sister. She has a photograph of Sian in her room.

"The way we cope is just realising that we have got to get on with it. We can't spend out lives crying. We are so grateful that we have Erin."

At the end of last year, Mr and Mrs John were on top of the world, preparing for their December 20 wedding and honeymoon in Rome, and the birth of their twin daughters, who were due in April this year.

But Mrs John discovered she had pre-eclampsia which had developed into Hellp Syndrome, a severe form of the condition.

The unborn sisters also had twin-to-twin transfusion syndrome, where the placenta doesn't divide blood evenly between the babies.

Mrs John was admitted to Southmead Hospital and had no choice but to have a Caesarean on December 16, at just 24 weeks pregnant.

Not only did Mr and Mrs John have to cancel their wedding and rebook it for earlier this year, they also had two gravely-ill little girls, who were so small that they could fit in the palm of their hands.

Sian was born weighing just 10oz, and died weeks later on February 22.

Mrs John said: "She seemed to have an increasing number of problems. Her lungs were too small and too weak. Her veins were closing because of the constant injections. We didn't think it was fair on her. She had an operation on her tummy, because she had a perforated bowel. We were told if she had survived she would have been severely brain damaged.

"We all decided the best thing to do was to turn off the ventilator. And this was the first time we got to hold her. She died in Steve's arms."

Sian was cremated at Westerleigh Crematorium on March 5. Her ashes and the ashes of Mrs John's grandmother, Pamela May, who died a day before the twins were born, were buried together in Mrs John's great-nan's grave, because the couple "didn't want Sian to be alone".

Mrs John continued to spend 12 hours a day with Erin in hospital.

Mr John, a plasterer, said: "At first we felt sorry for ourselves. But we are so thankful to have Erin. Having her home is the best birthday present I could ever ask for."

Erin has been through a lot in her short life, and although she is nearly a year old, her 'corrected age' – the age she would have been if she had been born at full term – is just seven months.

She had a small bleed on the brain, which corrected itself, and hasn't caused any long-term damage. She has a constant flow of oxygen through a tube in her nose, because her lungs were severely damaged after being on a ventilator for 10 weeks. She also had a heart operation and laser eye surgery for a potentially blinding eye condition.

But doctors are happy with Erin's development, and she now weighs 15lb 10oz.

Mrs John said: "She's always babbling. She's such a good baby. We are so lucky. When she wakes up she doesn't cry, she just lies there."

Mr and Mrs John's parents secretly decorated their house with 'welcome home' and 'good luck' banners and balloons for Erin's arrival.

The couple hope their little girl will grow up to be a doctor or a nurse. Mr John said: "She has been in hospital for so long she must have picked up some medical terms. Or she could be a model, because people say she's really tall and has beautiful big eyes."