I have two children, Blake and Phoebe Amber.

Whilst pregnant with Phoebe, I had a bleed and so we had an early scan at 9 weeks; Phoebe was fine but I carried on bleeding until week 24. I felt really uncomfortable and my stomach was so painful. The measurements at the 12-week scan were fine but they decided to bring her birth forward because she seemed quite small. A blood test then confirmed that I had low PAPP-A, which is a protein in the placenta - it affects growth and is a sign of Edwards’ Syndrome, but they didn’t do any further specific checks for that at that time. I was quite low risk for having a child with Down Syndrome or any Trisomy so I wasn’t offered an amniocentesis.

I had frequent scans after week 20, which just showed that she was a bit small and that I had Polyhydramnios - too much amniotic fluid in the womb. This can cause early labour and I had to ensure that I wasn’t alone at any time - if my waters went suddenly, I’d have to call an ambulance because there was risk of placental abruption and as she was so small, she’d just come out. So I had all these instructions, to bend over with my bottom in the air if I went into early labour and I wasn’t allowed to do any kind of exercise. I was terrified.

I was signed off from work straight away and I had her at 36 weeks.

When she was born, she didn’t breathe for 5 minutes so they had to resuscitate her. She also had a very small mouth and so she couldn’t feed properly. Her first night was spent in NICU and she stopped breathing twice. They decided to do genetic testing because she had low set ears but, because they made it sound like a routine thing, we didn’t panic. It was nice to have those 5 days where we didn’t worry because it was all so calm.

On Day 5 the doctor came to talk to us. We had a nurse on each side of us. It was a locum doctor who we’d never seen before and she told us Phoebe was incompatible with life. We were told about Edwards’ Syndrome and what could be wrong with her. She said: “Her life could be painful and they don’t normally live very long. There’s nothing we can do, that’s why we’re not sending you to Southampton. There’s no further treatment. We’ll try and get you home, if that’s what you want?” It felt like all the hope was sucked out of the room. Pete was crying next to me and I was just in shock.

We’re not really religious but when the nurses asked if we wanted a Christening, it was something we wanted to do. The next day we had both children christened with a party in the NICU, which was really lovely and we had a picnic by the duck pond.

We got home on Day 12 but it was like they had sent us home for her to die, not to live. I asked if we could have an apnea alarm because, if she was going to die, I didn’t want her to go in her sleep on her own.

We did talk about what might happen and what to do before we went home.

The WellChild nurse, who’s brilliant, helped us to prepare the advanced care plan. We did put ‘Do Not Resuscitate’ on there because she was just so frail and there was no response from her; as she got older though, we removed it. She did actually stop breathing at one point when she had a cold and I did resuscitate her. It’s weird, you get people asking you why you resuscitated her when it says not to on her plan. It was really odd. I had put ‘Do Not Resuscitate’ but at the same time, I didn’t want her to die of a cold.

We didn’t bond to begin with, Phoebe was just a little shell, there was no spark or spirit there. But I made sure she was cuddled all the time and that she knew someone was with her because she was deaf and possibly blind. Now, I’ve got a little diva who doesn’t like to be put down. She loves touch because I made sure she had that. That’s her enjoyment in life, not the toys, it’s other people that she loves.

She’s quite chunky now, which I never thought she would be.

She’s a bundle of fun and very cheeky. She doesn’t sleep at night because her carers are her best friends. She tends to go to sleep and then she’ll start pretending to be sick or do a little cry to get their attention, then she’ll beam at them and start chatting away. She’s very loud when she wants to be. She doesn’t speak but she’s very good at communicating in other ways with her body language and she has certain noises for different things, so she definitely gets what she wants. She just loves people really.

Phoebe loves to play. When her brother Blake is at home, she’s following him around everywhere with her eyes. She has also got a soft toy dog that she can’t sleep without. She’s the happiest kid I know. She’ll be starting at a nursery in September, we just need to decide which group she’ll be with because of her medical needs.

She has got a really big curve in her spine that they can’t really do anything with at the moment. It’s the worst it can get to, at 95 degrees - it’s quite rare apparently to have such a big curve in the upper spine and it causes a razorback deformity. They were going to put a big cast on her or try a brace but couldn’t because of her breathing function so we’re just waiting until she’s big enough for an operation. It causes a lot of discomfort.

If she cries, I know she’s in pain but that’s very rare. Before lockdown, I’d take her swimming and we’d go on holiday to try and give her the best life she could have but now she’s been stuck indoors. I feel a lot of overwhelming pressure to keep her physio, playing and development going because we’re not going out. There are other restrictions; you don’t appreciate until you have someone like Phoebe that you can just put someone in a pushchair and go for a walk. With Phoebe, I’ve got to make sure she’s got her wedges, she’s had her physio stretches and she’s in the right position.

Before she went on the BIPAP, at night-time, she wasn’t a happy child but since having the BIPAP, she’s completely different; she’s progressed more because she’s now comfortable. I’ve had to fight to get her eyes tested properly, to have the electrodiagnostic testing - she’s got a pit in her left eye and, in her right eye, she’s got a squint which they find very unusual.

It has been such a roller coaster.

When we came home from the hospital, that was very stressful and we didn’t really sleep at all. I remember sleeping on the sofa sometimes, with her downstairs, waking up and just carrying on in the same clothes.

I feel a lot more confident going out now and Phoebe’s a lot more stable. Since lockdown, she hasn’t had a cold so she’s got stronger; she used to have cold after cold. I remember going to a supermarket, having to drop everything, suction, make sure she wasn’t choking, and people were just walking around doing their daily thing.

I talk regularly on Facebook with some other mums to make sure each other is ok and talk about how our children are progressing. We also did a fundraiser together for the children’s ward in the hospital, to buy a vein finder because our children had bad experiences when they couldn’t find a vein.

What would have made things better would be not to have been told that she is incompatible with life. That in itself was really hard to get over because it really made us feel like there was no hope whatsoever. We were prepared for her to die and now we’re prepared for her to live.

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