Fighter Matilda, 5, beats the odds to start school

Matilda Fraser, 5, is set to start mainstream school after a brave battle for survival against a genetic condition. Picture: SWNS

Little Matilda Fraser, now aged five, was delivered 12 weeks premature after doctors at Southern General, Glasgow, noticed fluid in the womb.

During the worst snow the city had seen, the tiny tot was then transferred by emergency ambulance with a police escort to Yorkhill - now the Royal Hospital for Sick Children.

Doctors discovered Matilda - known as Tilly - had six genetic abnormalities that had caused her countless serious health problems.

The newborn was rushed into surgery just hours after her birth for 13 corrective procedures.

Mum Mandy, from Crookston, Glasgow, said the crucial hours before and during surgery were the worst.

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She said: “It was all very grave at the time and we were told she may not live but if they could get her stable they would transfer her from the Southern General, where she was born, to Yorkhill.

“It was December 2010 and the year we had the worst snow ever so the ambulance had to have a police escort as it moved to Yorkhill.

“At Yorkhill Tilly was diagnosed as having a group of genetic conditions known as VACTERL association.”

The disorder, which affects just one in 40,000 newborns, stands for vertebral defects, anal atresia, cardiac defects, tracheo-esophageal fistula, renal anomalies, and limb abnormalities.

To be diagnosed with VACTERL association a child must display at least three of the genetic problems - Tilly had six.

Her oesophagus was just like a pouch and when she swallowed the saliva went in to her lungs with nothing leading to her stomach.

She had an anal atresia, which meant she had no openings down below.

One of the bones in her spinal column is on the wrong side of normal and may or may not cause her problems as she grows up.

Tilly also has tracheo-esophageal fistula, which means her windpipe and the tube connecting her throat to her stomach were not connected where they should be.

She is also missing a thumb on her right hand.

Her ureters, the tubes coming out of the kidneys, had joined to her uterus so instead of urine going into her bladder, it was going into her womb - making the fluid showing up on scans before her birth.

Mandy said the whole experience was horrific.

She said: “When Tilly was born she was away for nine hours for surgery for 13 procedures on a three-months early baby.

“She then spent seven months in Yorkhill.

“It felt for a long time like it was nothing but surgery after surgery and learning how to manage all these various different things and help her lead a relatively normal life.

“It was horrific but at no point did we think there was no hope.

“When we were at our lowest point the Yorkhill staff would sit us down and talk to us, ask if we had any questions or if there was anything they could do.

“Tilly had one-on-one nursing care - one nurse for a 12-hour day shift and then one nurse for a 12-hour night shift.

“They were looking after her and looking after us.

“They didn’t sugar coat it for us even if things were looking pretty bleak. It was never, ‘That’s it’, it was always ‘Here’s what we’ll do and if that doesn’t work then we’ll try something else’.”

Miraculously, Tilly is now five-and-a half and continues to battle against her conditions.

She is even set to start at mainstream St Monica’s Primary School in Glasgow after the summer holidays.

The brave youngster is still regularly in hospital but has a strict daily routine to keep her well.

She needs physiotherapy three to four times a day to clear her lungs, and is fed through a tube.

But Mandy and husband David have been working closely with St Monica’s to ensure Tilly’s school experience will be enjoyable, although the youngster tires very easily due to her lung problems.

Mandy, an office manager, said: “Tilly knows her limitations and is very good - she knows when to stop if things get too tiring.

“She is full of fun and she’s very bright - brighter than her dad and me put together.”

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