by MARY MAGEE
A THREE-year-old Glenavy girl will be heading to Birmingham next month for a life saving heart operation.
Little Sophie Stewart, who suffers from the rare congenital heart defect hypoplastic left heart syndrome, in which the left side of the heart is severely underdeveloped, is to go to Birmingham Children's Hospital for surgery.
She already has had three open heart operations since she was born in 2007 and her parents have now been told the next step beyond this operation will be a transplant.
Her parents Natalie and Stephen Stewart are organising a fundraising event at Lilly Johnston's in Glenavy next Saturday night, September 17. Money raised will go to the Red Balloon charity based at the hospital and will also help fund part of their trip to England.
Unfortunately her parents do not know how long Sophie will remain in England and she could be there for anything up to ten weeks.
The nightmare began for the Stewart family before Sophie was even born when, during a routine 20 week scan, medical staff at the Royal Victoria Hospital noticed an abnormality in Sophie's heart.
They thought it could simply be the way the baby was lying in the womb but when Natalie returned two weeks later with her sister for another scan a cardiologist confirmed their worst fears - the little girl's heart was not developing properly.
As a result Natalie was monitored closely until she was 26 weeks pregnant and at 38 weeks Sophie was born by section at the Royal.
Sophie was immediately taken from Natalie and a team of doctors looked after her in intensive care.
The family were told they had two options. One was to leave the baby in the ICU unit where she could quietly pass away.
The other, which the family wanted, was to transfer Sophie to Birmingham where she would undergo major heart surgery. She was taken by air ambulance to Birmingham Children's Hospital and her grandfather Gerard Goodall and father Steven followed separately. Natalie was allowed to join them two days later.
Our world just fell apart when we were told that the option was just to let her go," said Natalie. "To us that just was just not an option so when we heard we could take her to England we just jumped at the chance.
Sophie underwent a Norwood procedure of open heart surgery and her parents were prepared for the worst as there was only a 60 per cent survival rate. They could do nothing except pray.
Miraculously Sophie got over her first major hurdle and returned to the Royal for a further six weeks. She also suffered from bronchitis.
At just six months old she returned to Birmingham for more invasive surgery.
When she came out of the theatre she went from intensive care to a high dependency unit while on morphine. During this time she had a high temperature, refused food and looked sickly. Her parents feared there was something seriously wrong.
She was moved back into intensive care followed by further surgery. It later emerged she had suffered a collapsed lung.
During her recovery she had a further setback, suffering a strain similar to MRSA.
Due to setbacks what was supposed to be two weeks in hospital became nine.
When she left hospital she was put on a feeding machine and eight types of medication per day including aspirin. However in the past year Sophie has shown signs that she now needs more heart surgery.
That is why she is returning to Birmingham on October 24.
"This is a rare condition," said Natalie. "Sophie is one of only ten people from here suffering from it.
The last year and a half you can see she tires easily, her colouring is quite blue and gets out of breath quite easily but apart from that she is just like any normal child. Her doctor at the Royal is very good and has written to the doctors in Birmingham.
She is a great child and loves nursery. She just started St Joseph's nursery last week. Hopefully the operation will help her."
The money raised on the fundraising night will go to the Red Balloon charity based at Birmingham Children's Hospital.
"We wanted to raise money for the charity to help give something back," said Natalie.
Natalie's father Gerard (Gerry) Goodall, who manages a local football team, held a charity golf day and raised £400.
"We would love to raise £2000, that is our target, but really anything at this stage would be great," said Natalie.
Tickets are £5 for entry which includes a disco, buffet and ballot. Among the ballot prizes are signed Celtic, Arsenal and Rangers shirts, meals for two in the Crown Plaza Dundalk, the Lansdowne Hotel, the Ivory, the Stables in Groomsport and at Lilly Johnstons. The event starts at 8pm.
Anyone who would like to ballot anything or help with fund-raising m any way can ring Natalie on 07584415588.