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Brave Emily, 2, “takes it all in her stride”

Emily recovering from surgery at Royal Aberdeen Children's Hospital
Emily recovering from surgery at Royal Aberdeen Children's Hospital

All any new mother wants to do is cuddle and kiss them and tell them everything is going to be ok.

When Karlyn Paul’s daughter Emily arrived, she did not even get the chance to hold her little girl as she had to be taken hundreds of miles away to undergo lifesaving surgery.

Emily, from Aberdeen, was born with the rare disorder Vacterl syndrome, a condition which causes multiple abnormalities within the body.

Doctors at Aberdeen Maternity Hospital did not realise there was anything wrong with her at first, as the tiny bundle opened her mouth to let out her first cry.

But within minutes, they discovered she was not able to breathe on her own.

Emily recovering from her first heart surgery, wearing clothes for the first time at 6 and a half months old
Emily recovering from her first heart surgery, wearing clothes for the first time at 6 and a half months old

Every baby born with Vacterl syndrome – Vertebral defects, Anal atresia, Cardiac defects, Tracheo-esophageal fistula, Renal anomalies, and Limb abnormalities – is affected in different ways and to different degrees.

People diagnosed with the condition typically have at least three of its characteristic features.

Emily had serious defects in her heart and windpipe, as well as a “tethered” spinal chord and fused kidneys.

Within 12 hours, the baby girl – who weighed the same as about two bags of sugar after her mother was induced a month early – was transferred to Yorkhill Hospital in Glasgow to undergo open heart surgery.

Her mum, who had suffered pre-eclampsia throughout her pregnancy, was forced to stay it hospital in Aberdeen while her husband Martyn had to leave her to be by Emily’s side.

The few days Mrs Paul was separated from her precious baby girl – not knowing exactly what was going on – were the hardest of her life.

“I didn’t get to hold her until she was three weeks old,” said the 32-year-old, who lives in the Sheddocksley area of Aberdeen.

“I could only look at her through the incubator. I couldn’t dress her or cuddle her.

“It was heartbreaking.”

Emily, three days old, in neonatal at Yorkhill Hospital,
Emily, three days old, in neonatal at Yorkhill Hospital,

As doctors explored the severity of Emily’s condition, Mr and Mrs Paul ended up staying at Yorkhill for three months, miles away from both their families in Aberdeen.

The couple also have another daughter, Katy, who was just two when Emily was born, and who needed her mother and father just as much.

Mr Paul, a self-employed personal trainer, found himself having to travel back and forth to the north-east during the week to ensure the family had enough money to get by.

“It was an absolutely awful time,” said Mrs Paul.

So far during her short life, Emily has undergone 21 procedures, including two open heart surgeries and major airway reconstruction when she was aged just six months at Great Ormond Street Hospital in London.

“It takes most people a whole year to recover from any major surgery. Emily has gone through 10 times more than most people will go through in a lifetime,” she said.

“But she takes it all in her stride. She can be a bit apprehensive when she needs to lie down on a hospital table, but she’s so used to it now.”

Now aged two, it is time for Emily to have a break from surgery, which will give her time to grow and get strong.

Emily, at  14 months old, recovering from the first part of her stoma reversal in High Dependency at Yorkhill Hospital
Emily, at 14 months old, recovering from the first part of her stoma reversal in High Dependency at Yorkhill Hospital

As a result of her condition, her kidneys will never be able to fully function, she has issues with her liver and she has a cleft palate inside her mouth which affects her speech.

“She talks to us in her own funny way, but she understands us all, she’s so clever,” her mother said.

“We were told after an MRI scan, that she might have severe brain damage. They said they wouldn’t know until she was older.

“But she’s so switched on. There’s absolutely no sign anything is wrong – she was even walking before her big sister did. She is amazing.

“It is hard to get your head around what she’s been through. Without Yorkhill, she would not be here.”

 

Family bid to give something back

As Mrs Paul sat by Emily’s incubator during the first few weeks of her life, she started thinking about giving something back to the people who were saving her daughter.

Emily and her family
Emily and her family

“There’s nothing else to do but wait, so I thought to myself ‘why don’t we do something for Yorkhill?’,” she said.

The Paul family started organising raffles and events in Aberdeen and taking part in tough mudders to raise vital funds for the hospital and The Ronald McDonald House at Yorkhill, accommodation where parents can stay for free for however long they need.

Last week, they organised a fun day at Sheddocksley Community Centre, which raised more than £1,600.

To date, they have amassed an impressive £25,000 for both charities, thanks to the generosity of their friends and family, and have more fundraising plans in the pipeline.

“Unless you have been affected by something like this, you can never fully appreciate what these people do for you – from the doctors who saved Emily’s life to the people who run the parents accommodation,” said Mrs Paul.

“They are really, really special. Emily wouldn’t be here without them.”