‘Miracle baby’ Elsie Lane finally comes home after overcoming the odds when doctors gave her little chance of survival
PUBLISHED: 08:22 27 April 2017 | UPDATED: 12:27 27 April 2017
Doctors have named her the “miracle baby” after little Elsie Lane was given little chance of survival when she was born 13 weeks prematurely and diagnosed with a rare illness.
Now, after eight months in hospital, her mother Rebecca Gooderson is ecstatic that she can finally bring baby Elsie home to Fakenham.
She said: “It’s completely surreal, I was told there was pretty much no hope but she has defied everything the doctors have said, it’s a miracle she is still here.
“Since she came home they have seen a change in her heart rate that shows she is a lot happier and more relaxed.”
But their struggle is far from over as Elsie will continue to need specialist equipment to survive outside of hospital and her family is appealing to the community for support.
Shortly after Elsie was born she was diagnosed with a rare condition called UPD 14, or Kagami-Ogata syndrome.
It means she faces a daunting future, needing constant oxygen to survive and the possibility of severe developmental and physical disabilities. She also has an extreme susceptibility to illnesses and infections.
Elsie’s uncle, Martin Gooderson, said: “They didn’t expect her to live long because she was born so prematurely with this condition. However, the doctors were surprised to find that when she was born she was breathing on her own and although she was later put on the ventilator they were really impressed. She really is a little fighter.”
He said doctors have been so surprised by her progress they have begun to refer to her as a “miracle baby”.
Now at home, the NHS can provide basic equipment, such as the oxygen, but additional pieces such as monitors, custom car seats and a cot will need to be paid for by the family.
They have also had to put up oxygen lines and support equipment all around the house to ensure Elsie is not confined to being in a single room.
Mr Gooderson said: “Rebecca lives alone and it will be a real struggle but she just wants her baby home. we want to highlight how amazing the staff at the hospitals have been, especially the critical care units.”
The family are raising funds to give Elsie the best life they can. Anyone that wishes to donate can go to to their fundraising website.
What is UPD 14?
The condition UPD 14, also referred to as Kagami-Ogata syndrome, means that Elsie has two copies of one parent’s chromosomes instead of one from each parent.
It was first reported in 1991 and causes a number of issues for a child. In Elsie’s case she was born with her stomach and liver outside of her body and she will need an operation to rectify this if she is able to get to the age and size required.
She needs 24-hour oxygen support to survive and is likely to have severe developmental disabilities as well as physical disabilities.
Elsie’s uncle, Martin Gooderson, said: “It is so rare and there is so little research on it, it’s a case of just seeing how Elsie is as she gets older. My sister is part of a social media group with a few other families with children like Elsie around the world and very recently a little boy, just a little older than Elsie, passed away suddenly so it really is one day at a time.”
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