Ella's story

"Ella’s our little miracle" Ella's Mum, Chloe

Ella’s our little miracle child. We were told to say our goodbyes when she was just three days old – her consultants didn’t think she’d survive long enough for us to take her home. But she’s five now. She’s surpassed all expectations, so we really have no idea what she’ll do next.

Ella has the most severe version of Edwards’ syndrome, also known as full trisomy 18. Typically, children with Ella’s condition don’t survive past the first trimester of pregnancy and if they’re born alive, they have just a 13 per cent chance of surviving beyond their first birthday.

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As well as causing problems with pretty much every organ, digestion and breathing, Edwards’ syndrome causes developmental delay. Ella is around the size of an eighteen-month-old and developmentally she’s roughly equivalent to a child of that age too.

When we were told Ella had Edwards’ syndrome, the doctors said she was ‘incompatible with life.’ I remember those words so vividly. It’s a label that’s sometimes used for children with Edwards’ syndrome. It basically means that if the child survives birth, they’ll never be able to do anything – walk, talk, eat, and all their organs fail.

But anyone who has met Ella knows she’s the complete opposite of ‘incompatible with life’; she’s full to the brim with life! She’s the happiest little girl you could ever meet – she's constantly beaming. She loves her Labrador Rufus, having fun, and rough and tumble play. And she loves anything silly – basically the more silly you are, the more she’ll laugh!

Signs in the scan

All through my pregnancy, Ella was really tiny. But we first realised something might be wrong with her development when I went for a scan at 35 weeks. The consultant told us that Ella had her fingers overlapped and her fists tightly clenched.

She didn’t say the words Edwards’ syndrome at the time, but I now know that’s a typical thing that children with the syndrome do. The consultant recommended that I had an amniocentesis to test for a genetic condition, but when I went to hospital the next day, they realised Ella had stopped growing so I had to be induced instead.

Ella was 3lb 4oz when she was born, and at her lowest weight in those first days in NICU she was just 2lb 9oz. She was so teeny-tiny, she looked like a little pile of skin at first, bless her.

Ella will lead the way

She had to have a small operation to fix a malrotation of her bowels and oxygen when she was born but otherwise, she seemed to be doing really well. She seemed stable. Then when Ella was three days old, they took me and Kyle into this little side room with so many doctors and consultants in there. We just thought, ‘Oh no, this can’t be good.’

Edwards’ syndrome is one of the main conditions they check for during the normal pregnancy scans. Our early scan results had showed that the chances of Ella having the condition was low, so when they told us she had Edwards’ syndrome we had an overriding feeling of shock.

We were told to make our end of life wishes right there and then and prepare for the worst.

It was during COVID, and our only wish was to invite Ella's grandparents and other immediate family into the hospital so she could meet them. It was very emotional; we didn’t know if they’d ever see her again.

Kyle and I were just absolutely devastated and didn’t leave Ella's side for a moment. But even in her first few days Ella already seemed to be surprising everyone with how well she was doing, so we just held onto that and thought ‘Ella will lead the way.’

A terrifying first week home

When Ella was six weeks old, they let us bring her home. It was an unbelievable feeling. We were living with Kyle’s parents at the time, and we decided to surprise them. It was so nice and surreal really.

But then two days later, she became violently sick. She’d been given a rich feed for weight gain and her little body couldn’t handle it.

So much sick was coming out of her tiny body. Then suddenly Ella just went grey and floppy and she stopped breathing. She died in my arms, and I had to give her CPR to bring her back to life. It was terrifying. I laid her on the floor, and she was so tiny that I had to use just one finger on her chest, and I breathed over her whole face.

Thankfully, she came around almost straight away. And within minutes the paramedics had arrived to help us.

I’d trained in CPR for adults when I worked at a dentist practice years ago, so I guess I must have remembered what do from then. It just felt like instinct.

They sent Ella home from hospital that evening but the next day it happened again. This time, it felt like we knew what to do and it was awful but not as dramatic. The doctors changed Ella’s milk after that and fortunately it never happened again!

Up until she was around four years old, any little bug would make her really poorly and we’d end up in hospital. She is still susceptible, and we had a really scary stretch in hospital earlier this year, but things feel like they’ve calmed down a lot now. She’s diddy but tough.

‘Ella loves it all’ at Julia’s House

We do have to be cautious about where we go with Ella because she is extremely vulnerable, so she tends to miss out on socialising with other children.

So, it's brilliant when she comes to Julia’s House sessions and events because she can have the best time in a safe space, with so many children. And Ella absolutely loves kids! She thinks they’re the funniest people in the world.

We’ve been cared for by Julia’s House for around two years now. It’s great for the whole family, but especially Ella. Literally, the minute we pull up on the drive she gets so excited because she knows where she’s going.

She’s made lots of lovely friends at Julia's House and she loves her nurses and carers too. Molly is our named nurse, and Ella is obsessed with her – she always gives Molly the biggest smiles and giggles.

Ella loves anything sensory. At the hospice she’s a big fan of playing in the sensory room, or getting messy with sand, shaving foam, paints, all that sort of stuff. She loves music and reading and she loves when they do the baking at Julia’s House. She just loves it all really!

And for us, it's reassuring that we can leave Ella with her nurses and carers at the hospice and at our home and not worry about her.

We don't have to panic and we can relax. We trust our Julia’s House nurses and carers completely because if anything were to happen, they know Ella so well and they know what to do in an emergency.

Family Garden Party fun

We went to the Julia’s House Family Garden Party this summer. It was the first time we’ve been and Ella had an absolute ball, it was so lovely. She loved the chaos, the kids, the music and the animals.

We had a bit of a panic when we got there that we’d left the changing bag with all her milk and medicine on our doorstep but it worked out fine.

It was really lovely for us to see other parents who we know there too. It’s always nice when I do see the other parents at Julia’s House because they completely get what life is like with a child who has complex medical needs. I have other friends, but they don’t understand what life is like – not really. But at Julia’s House, it feels like you’re all in it together.

"Ella’s our little miracle" Ella's Mum, Chloe

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