Just over seven years ago we found out we were pregnant with an Angel Baby and an Acorn Baby. Angel baby had body stalk anomaly, meaning there was no possibility of survival outside the womb. The other baby appeared to be fine.

Because of the nature of Angel baby’s condition, the doctors did not know a lot. Most people had a single baby pregnancy and chose termination or miscarried early. Having a twin pregnancy with a healthy baby and a body stalk baby was incredibly rare. The safest course of action seemed to be to continue with the pregnancy as normal.

Explaining this to our 5 year old son, Lachie, was difficult. We didn’t want to keep saying ‘the healthy baby’ and ‘the sick baby’. So the latter we called our Angel Baby who was there to watch over our other baby, who we called Acorn Baby. We explained to him that while Angel baby would not come home with us, a big strong brother or sister would grow from the other baby and would come home – we hoped.

However, it was far from a normal pregnancy. We had unexplained bleeds and leaking amniotic fluid. I was in and out of Edinburgh Royal Infirmary for constant monitoring. However, because of the likelihood of a premature delivery, we were able to prepare for that possibility. The doctors explained how the survival rates increased for every week that we progressed. We toured the neonatal ward and met the staff, who explained exactly what would happen if we went into labour early.

It might sound crazy, but we feel very lucky. So many people go into labour early and don’t have all the information we had. They don’t know about survival rates, about the exceptional staff, and dedicated equipment that is there ready to help. While it was obviously a very stressful time, we were also able to prepare for a possible premature delivery.

Which is what happened. One afternoon I started to have early labour pains, albeit very weak and irregular. We were at 29 weeks and 2 days. We had very much hoped to make it to 30 weeks. We almost got there. Full term is 40 weeks.

A Caesarean was always planned because of Angel Baby’s condition. They offered me a wheelchair to get from my room to the theatre, but I felt I could walk fine. All of the nurses and midwives – who I knew so well from my many visits – stood along the corridor like a guard of honour as they all knew we were going to deliver our two babies. We arrived into a room full of people – a team for me from the labour ward, and teams who had been called over from neonatal: one team for Acorn Baby and a team for Angel Baby too.

Angel Baby was born alive, wrapped in a blanket and handed straight to me to hold. The condition meant they could not determine if Angel was a girl or boy and we decided not to find out. To this day we still don’t know. We just know that we held Angel for many hours – we’re not really sure how many, maybe 3 or 4 – until our baby died in our arms.

We found out later that the midwife we had known because of our many visits had stayed on after the end of her shift in order to be there to take Angel from us when we were ready. We had had support, advice, and questions answered about emotional and practical issues from a Diana nurse through the charity CHAS which helped us with this difficult time.

Acorn baby was a healthy baby girl – albeit weighing just 1.2 kgs or 2lbs 10oz. Whilst in my hospital bed, they wheeled me to the neonatal ward, so that we could get just one photo of our Angel baby and our Acorn baby.

We called our Acorn baby Amy. When our neighbour, Gemma, dropped Lachie off to meet his sister the next morning, he called her ‘the turtle’ – because she looked like that lying on her tummy. We visited every day – Sarah arriving in the morning with expressed breast milk to feed her in tiny syringes, and Mark visiting on his lunch break.

We got used to the alarms, the noises, the routine, the small but important milestones.

We did skin-to-skin cuddling whenever we could and read to her. And each afternoon we had to say goodbye and trust that the nurses would care for her as much as we did.

We got a very long email from a friend of a friend, Sarra, who had also had a premature baby. She provided so much advice, support and empathy even though we had never met her. We repaid that favour when someone we knew but hadn’t met had the same experience a few years ago and we were able to send a long email. It just helps to know others have been through it.

Amy was in hospital for 49 days. They expected her to be in much longer but she just kept defying expectations and growing stronger and stronger.

A few days before she was due to come home, we had a simple funeral for Angel Baby – just us and the minister. We played Sarah McLachlan’s ‘Angel’ and said goodbye. The neonatal nurse on duty that day was the same that was on duty when Angel and Amy were born. She promised she would pick Amy up and cuddle her at the time of the funeral. I’m sure that she did.

I am writing this today sitting on the couch next to my happy, healthy, strong, football-mad 7 year old daughter Amy, who is watching the World Cup with her Dad. Spain just scored and they are discussing what that means for the group. The experience we went through seems like a long long time ago. And it also seems like yesterday.

What I realise as I write this is the number of people, some of whose names I don’t remember, some whose names I never knew, who cared for us during this experience. And I also know that medical research contributed to the skills and knowledge of the teams of people who looked after us, and the equipment that kept our Acorn baby healthy. We can never thank all of them enough.