Aurelia and Aurora's story

When we first found out we were expecting twins, I was elated and felt so blessed. Everything seemed to be going so well, then at around 27 weeks I started to get really sick.

I suffer from the same rare congenital heart condition as the girls, so we always knew that having children might be problematic – but we were told that my condition couldn’t be inherited.

A lot of it seems like a blur now, but I remember the doctor sitting us down with the scan results that day. He told us that we wouldn’t be taking our babies home, and it was unlikely I would live through the birth either. I think the news was hardest for Tom. He struggled a lot.

When the girls were born by caesarean just three weeks later, neither of them were breathing.

Aurelia came out first, weighing 3lb 3oz, and Aurora followed, weighing 3lb 4oz. There were 40 medical staff there from all over the country, who helped them to take that first breath.

Afterwards, I was immediately taken to a different hospital in case I needed a heart transplant. Tom spent every waking hour by their incubators and brought me back photos every night. The wait was unbearable. I finally got to meet them on day five, when I was strapped to a stretcher, with all my monitors and wires and a whole ambulance crew to escort me. It felt like I hadn’t given birth and I didn’t know them when I met them.

Cuddles became so daunting it felt safer to just watch them in their incubators. It took me a long time to bond with them.

When we were finally able to take them home on the day of their due date, we were elated. Incredibly their condition continued to remain stable, but then at six months Aurelia deteriorated quite dramatically with bronchiolitis and she went into heart failure.

The girls have identical conditions and they warned us then – as they still warn us now – that they might not live for much longer.

Aurelia managed to bounce back from the infection, but she came home tube fed. Until she was 18 months, I struggled to ever leave the house because it was just a constant cycle of tube feeding and vomit. She’d vomit everything up and she was so weak she looked like a ghost child. I’ve never experienced anything like Aurelia’s vomiting – she could reach the other side of the room. We had plastic sheeting covering our house. It was the most horrific period and such a bizarre way to live.

Now Aurelia has a button on her tummy, which looks like a tiny dummy and is connected to a tube that goes directly into her stomach. Until lockdown, being pump fed was a lifeline for her but more recently we’ve been able to eat together as a family and only use it to top her up.

A normal thing like that – watching your child eat and sitting together for a meal – is an incredible milestone for us.

It has been a tough, exhausting and emotional journey so far, but the girls are such fighters. They’re complete characters and love to do everything together – they’re in their own little world and can be completely mad at times. To look at them you wouldn’t think there was anything wrong with them, other than being a little underweight. But having this condition makes them very fragile and they get tired easily.

The girls will go and go and then just literally lie on the floor and scream because their bodies have had enough.

Like me, they both have cardiac implant devices that constantly monitor their heart rates and they have to take lots of horrible medication three times a day to keep their condition stable.

We were told that both girls would only reach 30 days and anything else after that was a bonus. But even still now at cardiologist appointments, they say we’re on borrowed time and it’s amazing what they’re achieving. It’s possible that they could catch something and spiral but right now, they just seem to be going from strength to strength.

We’re just taking each day as it comes – whether we only have children for 30 days or 30 years, we can’t dwell on the uncertainty.

We don’t have any regular support network other than Julia’s House. The emotional, respite and clinical care that their nurses and carers offer is life changing for the whole family.

It’s like having a trusted friend at the end of the phone, who will come over to help us whenever and however we need it most.

Tom is a charge nurse and spends a lot of time away from home, working long shifts. So it’s often just me and the girls at home, which can be quite overwhelming and exhausting.

Having Julia’s House here to care for the girls means that I can have a lie down for a few hours. Or just go for a walk to keep my mental health in check. I can do the things that need to be done and it gives me the time to just be.

To be able to say to our Julia’s House nurse Molly, I’ll see you in half an hour and just walk out the door with peace of mind that she’s in control and they’re safe is amazing.

The girls have so much to deal with. It’s just normal life to them, but they’re constantly being tweaked with and going off to hospital.

So for them to have this special grown-up friend who accepts and understands them, and wants to do whatever they say sounds fun is brilliant. They get so excited when they know she’s coming and I don’t hear laughter like it at any time other time than when Molly is here. It’s a really special time for the girls just to be themselves and do what other four year olds take for granted.

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