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.