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Agony as baby dies 40 hours after her birth; Parents tell of heartache as rare kidney disorder claims little Ellie.

Byline: JOANNE BUTCHER

SHE had a one-in-a-million chance of getting the disease.

But tiny Ellie Lee Forrest died at just 40 hours old from a rare genetic kidney disorder.

Though she bravely battled for survival, her premature body could not cope with the illness and she slipped away in her family's arms.

Today, her heartbroken parents Naomi Warburton and Lee Forrest, of Blyth, told of their agonising decision to turn off Ellie's life support.

"The doctors told us they could keep her alive for a few hours, or we could let her go peacefully, with her family there," said Naomi.

"I remember standing at the incubator when we made the decision to let her go. It is the most heartbreaking situation, to know that your child is better off not being in this world.

"We dressed Ellie and I held her, while Lee took out the tubes. Those last few hours with Ellie were the hardest of our life, but also the best, as we got to hold and love her and tell her everything we needed to.

"We kissed her and told her how she'd always be with us, not to be scared and how proud we were."

Naomi, 23, had a normal pregnancy until 20 weeks, when doctors detected a lack of fluid in her womb. At 28 weeks, scans revealed baby Ellie was suffering from autosomal recessive polycystic kidney disease, a genetic disorder which caused her kidneys to get bigger, put strain on her heart, and stopped her lungs growing properly.

The illness affects around one in every 20,000 babies, and can only happen when both parents are carriers of the faulty gene. "Lee and I had no idea we were carriers," said Naomi.

"Doctors said there was a one-in-a-million chance of us both being carriers and our baby being born with the disease."

At that stage, doctors believed Ellie had a 70% chance of survival, though they warned Ellie would need dialysis and a kidney transplant in later life.

Naomi's pregnancy continued until 34 weeks. But last week she noticed Ellie had become unusually still.

She went for a check-up and within half an hour, was rushed into theatre. The new arrival was taken to intensive care, where doctors treated her for two hours before Naomi and Lee had a chance to see her.

"I heard her cry as she was delivered but she was struggling to breathe," explained Naomi.

"With tiny lungs and an enlarged heart, they said Ellie might not make it to one day old. She was having none of that, she managed to stabilise herself and fought through.

"The name Ellie means both shining light and famous warrior - Ellie was both."

But the next day, Ellie's condition started to get worse, and Naomi and Lee were forced to let her go. She slipped away in their arms on February 7. "I brought her to my chest and felt myself die inside, this beautiful little girl we had created, wanted, loved so much was gone," Naomi said.

Naomi and Lee have set out to raise pounds 10,000 for the Tiny Lives fund for the Special Care Baby Unit at the RVI, and have already raised almost pounds 1,000.

"We can never thank the staff at the RVI enough," said Naomi. "Without their incredible work and support, we wouldn't have even had those amazing 40 hours with Ellie. We are so proud that in Ellie's first week, she has inspired people to donate so much to Tiny Lives."

To donate, visit www.justgiving.

com/Naomi-Warbur-ton/2. Family friends have also helped organised a fundraising night at Shearer's Bar on April 29 for Tiny Lives.

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HEARTBROKEN Naomi Warburton and Lee Forrest lost their daughter Ellie to a rare kidney disorder
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Publication:Evening Chronicle (Newcastle, England)
Date:Feb 17, 2011
Words:630
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