“I didn’t feel like a mum” - Katie’s story

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Content warning: baby loss. Katie gave birth to two twins, Jude and Ava-Rose, at 23 weeks. Jude sadly passed away, and Ava-Rose spent five months in the NICU. Katie now helps other parents going through a similar experience, and she wants her story to be one of hope.

I was trying to have a baby for a number of years and couldn’t conceive. I was pushed into the IVF route but was warned that it would be really difficult.

In 2014 I luckily got pregnant! At the eight-week scan, I found out that we were having twins, and we were absolutely over the moon. At the 20-week scan we found out that we were having a girl and boy - everything was going so well.

Three weeks later, I was at home before going to work a night shift and then desperately needed the toilet - I didn’t realise that it was my waters breaking. I went to the early pregnancy unit, and they said that the fluid around twin one had started to leak. I was glad that at least I was somewhere safe and kept checking on me every four hours.

Then I had a stomach ache which turned out to be contractions - they got worse and worse, and my waters kept leaking.

I knew that it was unlikely that babies survive at 23 weeks. I was in labour all Friday and on Saturday and they kept scanning to check on the twins. Sadly one of my babies, Jude, had died inside of me, but they needed to keep him in there to give the other twin the best chance of survival.

Jude had passed an infection onto me, so after three days in labour, they had to induce me. I was so scared - the medical team told me that if my other twin didn’t try to take a breath, then they wouldn’t be able to help her. Back in 2014, babies born at 23 weeks weren’t seen as viable.

All the neonatal doctors were in the room when I gave birth to Jude – they took him away straight away and I then gave birth to lovely Ava-Rose, who weighed 485g. She didn’t cry, but when they gave her steroids (which they didn’t normally give to babies under 23 weeks), she took a breath and they whipped her straight down to NICU.

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I was taken into the Serenity Suite on the maternity ward but I went into shock – I was so sleepy and couldn’t process what happened. They brought Jude in a cold cot, and we had a day together before the Funeral Director had to come and take him. As he was born under 23 weeks, it was regarded as a late miscarriage, and I couldn’t even get a birth or death certificate for him. He only weighed 510g - It was so devastating.

I got taken down in a wheelchair to see Ava-Rose but I don’t even remember it – I wasn’t aware of anything. A couple of days passed and the doctors said that it wasn’t looking good for Ava-Rose – I couldn’t possibly lose both of them.

I had a horrible feeling in the pit of my stomach. Ava-Rose was so tiny that I couldn’t even see her when you walked past her. She was on a ventilator and I was too scared to touch her – I didn’t even really know what the incubator was at the time!

Despite having multiple doses of steroids, Ava-Rose’s lungs were weak and there was nothing else they could try to get her off the ventilator. I hadn’t even had a chance to hold or look at her properly with all the wires covering her face. I remember not feeling like a mum at all and kept telling myself, “I’m not a mum.” The doctors kept telling her that she probably wouldn’t make it so I tried to not get attached, but I couldn’t help it. I kept willing her and putting energy into helping her. You don’t feel like a parent cause you can’t do anything to help them – there was minimal handling because I daren’t move just in case she died.

Ava-Rose was in the NICU for five months, spending most of the time in Room One. After a few weeks, she started taking bits of her milk, and her stats were improving, the waves on the ventilator were getting a bit stronger. After two and a half months she moved out of NICU to SCBU and was put on CPAP, which blew her up like a balloon. My partner and I were there all the time – we were too scared to leave the unit or sleep. Even when she went onto the low flow oxygen, moved into the nursery, we couldn’t properly let our guard down.

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I felt a bit of resentment towards everyone just carrying on with life on the outside while we were living in a constant state of anxiety. The day we came home was amazing, we were full of emotion. It was scary being away from intensive support – we had got used to being able to ask the nurses questions. I felt so excited but kept thinking, what if I do something wrong?

Ava-Rose is seven years old now with no issues or long-term health conditions. I volunteer for Aching Arms, a baby loss charity, alongside working on the unit where I gave birth as a Healthcare Assistant. I can talk to parents and reassure them that I truly understand what they’re going through. My experience helps them trust me and really open up. When you’re in the NICU you never expect to be there and may feel guilt and anger, but your feelings are always justified and valid.

Ava-Rose is a miracle and this is definitely a story of hope for other premature babies!