by MARY MAGEE
Amanda Baylis and her daughter Sophie
AN 18-MONTH-OLD girl who suffers from a rare heart defect and had extreme liver failure is to make an emotional return to Lisburn this month to visit her grandmother.
It will be the first time Sophie Margaret Baylis has been well enough to travel to see her granny, Margaret Marston, who lives at Coronation Gardens, Maze since she was born here last year.
It is a trip mum Amanda never thought Sophie would ever be well enough to make.
Sophie was born with a cleft palet at Lagan Valley Hospital on May 9, 2010 while Amanda who was staying with her mother.
At three-and-a-half weeks the pair returned back to her home at Rawtenstall in Manchester.
It was during a routine visit by a nurse that Amanda explained her daughter was not feeding well and was weak and the nurse noticed her complexion was blue in colour.
She was rushed to Royal Blackburn Hospital and later transferred to Alder Hey Children's Hospital.
She was diagnosed with Truncus Arterious type three - which affects one in every 6000 babies - meaning her heart was not pumping blood to her organs properly and also suffered digeorge syndrome.
Essentially she had a hole in her heart, which was not connected to her left lung and she only had one heart artery instead of two. At just five weeks old she underwent major surgery to repair her heart.
Sophie stunned surgeons who told Amanda they were amazed how someone so young could have survived for so long.
The operation was successful but due to the strain on Sophie's little heart, doctors were only able to complete half the procedure. But in February this year She had the second operation and following further complications was fitted with a pacemaker.
However another major setback was yet to come. Three days after the operation she collapsed in bed and was rushed into intensive care and put onto a ventilator.
It was discovered she had severe liver failure and was put onto a ventilator. Doctors told Amanda they had never seen anyone with such serious liver failure survive.' But they also said a transplant was not an option as Sophie was too young to survive it.
While in hospital she was also treated for morphine withdrawal and MRSA and she also had her cleft palet repaired.
Yet a further setback occurred when she was at home and began vomiting up blood. She was rushed to hospital where it was found she had a severe stomach bleed. She was taken off all drugs as they were found to be eating away at her stomach.
Now at 18 months Sophie and Amanda are having a much needed trip back home. Amanda believes it is Sophie's determination that has helped her through so much.
"Sophie is a feisty, brave and intelligent little girl who can now look forward to a relatively normal life," said Amanda.
"We are looking forward to doing all those things mothers and babies take for granted, like going to the park
"You just get on with it don't you?" said Amanda. "You cannot sit down or give up, you cannot put your head down. You cannot think that way. She is the one that is fighting.
"The support that I have got from family over here was incredible. My mother attends two churches and they were all praying for Sophie. Without that support I don't know what I would have done.
"Sophie is definitely a miracle baby," added Amanda. "She is full of determination and full of life. She cannot walk yet as the muscle strength in her legs is still weak and her speech has been delayed but she is always smiling and always joking around." Sophie, who is still getting physio and lots of therapy, will have to have a third heart operation when she is about six.
"I cannot thank the doctors at Alder Hey and Blackburn, the community nurses, dieticians, staff at Derian House and my family, friends and neighbours enough. Without all their support Sophie would not be here today" Amanda said.