‘My twins were born with holes in their brains – I’m so proud they are at school’

Most parents are proud – if not a tiny bit relieved – when they see their wee ones start their first day of school.

For Northfield mum Nicole Clark, you can multiply that pride by a thousand.

Seeing her twins Elsa and Ella start school is not much short of a miracle.

But the 30-year-old is also very worried for her girls’ future – short term as they start Westpark Primary, and longer term too.

Elsa and Ella were born 10 weeks early and, just five weeks later, doctors told Nicole both girls had periventricular leukomalacia (PVL).

It is a condition that causes damage – effectively holes – in the brain’s white matter, caused by a lack of oxygen.

At two, the twins were diagnosed with cerebral palsy. They can’t walk and have eyesight problems.

Single mum Nicole said: “When I got taken into the room and the doctor came and spoke to me, I felt like my life would never be the same.

“I couldn’t see how I would manage.

“But they’re smart little girls and have proven it all wrong.”

‘They were tiny, but I thought everything was fine’

When Nicole fell pregnant with the twins in 2019, everything seemed to be going fairly smoothly.

By the time she got further into the pregnancy, Covid had hit – and it became more difficult to juggle appointments and life generally with toddler Eva.

About 10 weeks before her actual due date, she went into hospital with some concerns. It was action stations from then on.

Nicole remembers: “I thought everything was as fine as it could be, considering they were 10 weeks early.”

But things moved fast and she had the twins within hours by Caesarean section on April 5. Elsa weighed 3lbs 3oz and Ella was 3lbs 7oz.

Her mum Karen Finlayson was in with her for the birth, and then the girls’ dad Aron was allowed to visit once they were born.

“No-one got to meet them until they were six weeks old and we got them home. Even Eva only got to see them through a window.”

But despite the element of surprise and a tricky lockdown start, the girls had arrived.

They were rushed to special care, and everyone just had to hope for a good outcome for the little fighters.

Nicole was by their side as often as was physically possible. She knew they had a battle ahead – but she was about to find out it was a lot tougher than anyone had originally imagined.

A bombshell diagnosis

Although times were tough with twins in hospital and another little girl at home, the family were coping OK.

Sometimes, the world of premature babies can create a new normal.

Nicole added: “The girls had feeding tubes and everything because they were so early – I didn’t suspect anything.

“I just thought everything was kind of fine.”

She knew the girls were having scans after seeing “a bit of jelly” on their heads – but added: “I just thought it was a routine kind of thing.”

But then things changed and the doctors called Nicole in for a chat.

Nicole said: “They told me they had done brain scans and they’d found they had some holes in their brains, which is PVL.

“They couldn’t tell me much, or why – no-one has an answer to why – other than they were twins and born early.”

The news was a bombshell.

“I felt like my life would never be the same – I couldn’t see how I would manage.

“They said Elsa would be in a wheelchair all her life and wouldn’t really do anything.

“It was almost like, just write them off because they’re not going to do much – which has been proven wrong because they’re such smart little girls and they’re so happy.”

‘They’re the happiest girls’

At two, twins Elsa and Ella were diagnosed with cerebral palsy, which can happen with PVL.

Nicole said: “They’re both affected in all limbs – they can’t walk. Ella will drag her legs and get about sort of like crawling, but not.

“Elsa just sits, she can’t move around. She sometimes falls over when she’s just sitting.

“But they’re the happiest girls. Ella is very helpful towards Elsa – if Elsa drops something, Ella will scoot over and try and pick it up for her.

“And I’m sure Elsa thinks she’s a little grown-up – she spends a lot of time with adults. She’s more of a watcher, and Ella’s the doer.”

Elsa – older by three minutes – likes Spiderman and Captain Marvel.

Ella, on the other hand, went off to her first day of school with a Stitch schoolbag and likes Gabby’s Dollhouse.

As with all kids, the girls just kept growing up – and Nicole was soon considering nursery and school.

Although she thought about trying a school with extra support for children with additional needs, she plumped for mainstream.

She felt the girls, who are chatty and bright, would benefit from time in a classroom.

So, after mainstream nursery, this year was time to head to school at Westpark Primary.

Nicole had tried for a deferred year, but it wasn’t to be – so the girls set off for school this month.

And they’re in good company – Eva, now seven, has just started P4 there.

‘A massive achievement’

Although there were a few tears on day one at school, Nicole is hopeful that it will be good for her girls.

She said: “Once they were actually in and they got settled, they did really well. I didn’t think it would go as well as it did.

“Having their nursery teacher in visiting them was a big help – the school and the nursery couldn’t have been better.

“It was a massive achievement for them – and they’re telling me now that they want to go back tomorrow.”

Now Nicole has time to take a breath (well, at least for a few hours a day), how does she feel about the girls’ future?

She said: “When they were born, all they did was cry – it was so hard with the two of them and Eva as well.

“How do you split yourself three ways?”

Even practical things like getting the girls to and from school needs help because there are two wheelchairs and only one mum.

Nicole acknowledges she is lucky to have her mum on hand and “mother hen” Eva to help.

But anyone can see it is a tough job.

Nicole wanted to thank the charity Charlie House, who she says have helped the family in so many ways since the girls were born.

She said: “They make the impossible, possible. It meant we could do things as a family.”

The family also have their own Go Fund Me page to help get the girls specialist therapy, some of which is abroad.

And for now, the image of her three girls, ready for school together, is enough to keep her going.

[Source: Press and Journal]