“I want people to have hope, especially parents who have lost one of their twins” - Keeley’s story

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For Baby Loss Awareness Week 2023, Keeley shares her experience of having twins, Arlo and Avi, born at 23+3 weeks.

I went into spontaneous labour at 23+3 weeks, with identical twins, Arlo and Avi, on 21 February 2023. It was completely out of the blue and unexpected after a ‘normal’ pregnancy.

They were born at Colchester Hospital, which has a level two neonatal unit but they needed level three care so needed to be transferred by ambulance up to Addenbrookes. When I went into labour, I didn't expect either of them to survive at 23 weeks. I didn’t think it was possible, so when they were both born, kicking and screaming, it was amazing really.

The day after we arrived at Addenbrookes, we lost Arlo. He died due to brain and lung haemorrhages caused by his prematurity and the fact he had to be transferred. Our surviving twin, Avi, spent 100 days at Addenbrookes before being transferred back to Colchester where he spent another 28 days in neonatal care.

Overall we spent about five months in NICU, and it was like being in another world - like a little NICU bubble where the outside world just sort of stopped spinning for us for a good few months.

Avi fought through so many complications. He caught sepsis nine days into our stay, and at the time we thought that it might be the end of our journey, but he managed to fight it.

He also caught an infection that the healthcare professionals had not heard of before and it was resistant to quite a lot of antibiotics, so the NHS had to buy a little-known and expensive antibiotic, which Avi had to have for three weeks. We’re ever grateful for the NHS, as again, Avi managed to fight off the infection.

Avi also faced most of the common conditions that come with prematurity: he had suspected NEC, which put him off his foods for just over a month, ROP, which he had laser surgery for and chronic lung disease, which meant he was on a ventilator for two months.

After those two months he went on to CPAP quickly, down to high flow and then onto low flow oxygen, before coming home on it. Now Avi is seven months old, three months corrected – he’s off oxygen for most of the day and just on it at night.

Apart from that, he is doing fantastically health-wise. Obviously it's still early days and developmentally there's lots of things that could still come up, but he’s doing well so far.

We have a community nurse visit us once a week and we've got open access to the local children's unit in case of any illnesses or infections.

During Avi’s time in NICU we stayed at Chestnut House, which is provided by the Sick Children's Trust. I don't know what we would have done without it, to be honest. It was one of those services that we didn't know existed, we didn't know was needed, until we were thrown into that situation. I couldn’t have left him there.

I remember when we first got to NICU, a lot of the nurses and doctors said to us, “You know, it's a rollercoaster. You can have ups and downs, good days, bad days. You'll go one step forward, two steps back”. And it really felt like the first two months, at least, we were just waiting for those good days. After the sepsis, it was suspected NEC and then the chronic lung disease, worrying that he wouldn’t come off the ventilator.

We were being hit with one thing after the other. As soon as one thing started to get better, something else started to deteriorate. Each day saw us in survival mode and feeling the highest level of anxiety.

Luckily Addenbrookes have an in-house counsellor who is offered to all families that stay on the unit and she was brilliant. She spoke to me every week and because we were staying there, we saw her a lot around as well. She would come to see Avi and check in and she was there just for a nice chat rather than a full on counselling session when we needed it.

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Losing Arlo made our time in NICU with Avi even harder because it was just really hard for us to be positive. It felt like we had experienced the worst case scenario and knew it could happen again. We were very aware of how quickly things can change: On the day Arlo died, he was okay in the morning, as okay as he could be for a brand new 23 weeker, and then by the afternoon he died.

We received a box from the charity 4Louis when he passed away, which was amazing, and we were given a cot card and a book from the Skye High Foundation. It took us three months to arrange Arlo's funeral, which the hospital helped us to arrange, but once we'd had it, it took a weight off of our shoulders. While we were sat by Avi's side, we were very much aware that Arlo hadn't been laid to rest and knew he was still waiting for us. We just couldn't bring ourselves to take the time away from Avi to do that.

The funeral was held at Cambridge Crematorium and we had our immediate family there, which was really nice.

On the unit, we decided that we weren’t going to Google anything because if you search hard enough you find stories of babies that had similar things and survived, babies that have similar things and survive with disabilities, and babies that don't survive. There was no point googling what might happen because if Avi’s own consultant couldn't tell us what was going to happen, then the internet wasn’t going to be able to.

Having the Bliss website with reliable information and facts was great because sometimes we were unable to process what the nurses were saying in the moment. All the Bliss leaflets we were given were invaluable when it came to being able to have something to read, take in and digest properly and just understand facts without trawling the internet.

The advice I would give to parents with a baby in neonatal care is that it's okay to walk away and take time out. It took me nearly three weeks to go to the shops in the hospital because I was so scared of leaving Avi. I felt guilty because I was staying downstairs, I should be next to him, but the nurses would say to me, “It's fine. Go and have the whole day out if you need it”.

When I did eventually take a break, I started to feel a lot better, and more focused - I wish I'd done that from the start. I guess it takes time to build trust in the nurses and they were like family by the end of it, so I was happy to leave him with them. The nurses are incredible. They're there to look after you and to look after your little one, so listen to them when they say go and take a break.

The other thing I would say to parents is to keep a journal - it gave me a good outlet of reflection in the evening and I have kept it for Avi when he is older!

I want other families to have hope, especially parents who have lost one of their twins. I read a lot of stories when we were on the unit, and there weren’t too many with twins where we'd lost one. If you lose one, it can still be okay for the other one.

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