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5 May 2015, 05:00
A baby from Northumberland, whose organs sit outside her body, has been given the go-ahead for life-changing surgery.
Nell Marshall, who was the only survivor of a set of triplets, and whose bowel, liver and stomach are on the outside of her body, could have died if the skin holding her organs ruptured during delivery.
But now Nell, who has just turned one, will have an operation to put the organs, currently in a bag of skin called an 'exompholas', attached to her body only through her belly button, back into her abdomen.
Mum Joanne, from Hexham, was told that Nell might require surgery as soon as she was born.
The 35 year old said:
"The exompholas is really just a sack made of very thin skin from the umbilical chord.
We were told it could rupture and Nell would need immediate surgery to keep her organs sterile.
Thankfully that didn't happen.
She is now one and her organs are still in the little bag of skin, on the outside of her belly, but it was taped to her stomach to encourage skin to grow over it."
Large exompholas' like the one Nell has, occur in around one in every 10,000 babies, while smaller exompholas' can happen in one in every 5,000 births.
When Nell was just a few weeks old she was diagnosed with a further problem, an aortopulmonary window, which is essentially a hole in the heart.
"Initially the exompholas was the biggest problem, but when we found out about the hole that became the top priority.
The doctors said it was a very rare condition and they hadn't seen a case like it for 30 years.
They joked that they had to use textbooks from the 70s to treat Nell but thankfully the operation, which saved her life, was a success.
Everyone we dealt with both at the Royal Victoria Infirmary and the Freeman Hospital in Newcastle were absolutely brilliant, I don't know how we could ever thank them enough."
Having dealt with the heart problem, Joanne and her husband Andrew, a spray painter, were allowed to bring Nell home with them after three months in the hospital, but her exompholas remained.
The family were told that Nell had to grow before she could undergo such invasive surgery so has been living with her condition for a year.
Nell, who has three older siblings, Amy, 12, James, 8 and Iris 3, is due to undergo an operation on May 19th which to put her organs in the right place.
But Joanne, who is the manager of a playgroup and lives with her husband Andrew, 45, as well as their children in Hexham, Northumberland, said that she is worried about the upcoming operation.
"We spent the first three months of Nell's life in hospital, she had a hole in her heart which was fixed with pig's skin, she suffered pneumonia, breathing problems and a raft of other complications.
Being prodded with tubes and needles left her with a complete aversion to being touched on the hands or putting anything in her mouth and she is just getting back to her normal, happy, brilliant self.
As with all major operations there are risks involved and her little body will be covered in scars.
She still doesn't eat normally and is fed through a tube because of problems with her throat as a baby.
The long-term effects will be around for Nell for ever, but she came so close to having no life that we are going to do everything that we can to try to make life brilliant for her.
I will work to make sure she has a positive body image and teach her to grab life with both hands."