“Reflecting on our neonatal experience is tough” - Alice’s story

I drove to Homerton Hospital on the morning of 2 April 2020, three weeks into lockdown. The day before I'd had a little bit of discharge, so I wanted to get checked out. I’d had a little bit of pain, but I assumed it was just because I was pregnant with twins!

The midwife firstly checked that she could hear both of the babies' heartbeats. After a little while, I was starting to feel a bit more pain in my lower back. It wasn't anything bad, but I remember pacing around the waiting area.

Then I saw the doctor who checked me over internally before telling me that I was in labour. I was only 23 weeks and four days.

The Head of Foetal Medicine came in and started to explain that they would do everything they could to keep the babies. I remember saying, “so, will I go home tomorrow?” because I just couldn't understand what was going on.

She said, “you’re not going anywhere” and told me to ring my husband, Jim. He arrived quickly and I was given the first set of steroids before we were taken into a labour room.

I went to the toilet in the en-suite and my waters broke, like in a film. Jim heard and said, “is that what I think it was?”

He shouted for the midwife, and then I came out of the bathroom and fell to my knees. I could feel the twins coming and before I knew it, the room just flooded with about thirty people, including a NICU team for each of the twins, and they got me on the bed.

Within half an hour I’d given birth to them both. Bodhi was born at 4:20 pm and Peggy around 4:30 pm that same day.

I was in complete shock. The medical team stabilised them as much as they could before they took them to NICU. One of the millions of miracles or stars that aligned along the way was that the hospital was a level three.

I always remember going in to see them for the first time and I didn't even have any underwear on, I was just wearing a gown. I remember sitting on this plastic chair – I just didn’t expect to see my babies for the first time in that way.

Jim wasn’t able to stay in the hospital with me overnight, so I was on the ward alone, with everyone else being induced or in labour around me.

Obviously, I couldn’t sleep, so at about three o'clock in the morning, I went in to see them. One of the nurses said, “if I get you a cup of tea, will you promise me that you will drink it then you'll go back to bed?” I said yes and was discharged first thing in the morning.

The next day, a consultant explained quite honestly that, at their gestation, they weren’t technically viable and gave us the odds of survival. They said, if the twins do survive, then the likelihood of severe disability is very high. Peggy weighed 550g and Bodhi weighed 600g.

We spent all day at the NICU and then went home that night. I broke down - I had been living on adrenaline until then.

Then that was it for the next five months – going to the NICU every day.

As we had twins, Jim and I could both visit them in the NICU. The twins were in separate rooms, but at least we could drive to and from the hospital together.

Peggy was sicker than Bodhi, she took longer to get off breathing support. It was about six weeks until they came off the ventilators – six weeks until we could hold Bodhi, and eight weeks until we could hold Peggy.

Up until their due date, which was 26 July, I could almost rationalise their NICU stay by thinking, it’s okay, they should still be in my tummy.

But after their due date, I found it harder and harder. When I was on the unit I was luckily able to have a weekly session with the unit psychologist on the phone which was amazing. I used to stress myself out because it was an hour away from the twins and I’d feel guilty for not being with them, but I really needed it for myself.

The hospital was amazing – we always felt so safe with them and trusted them implicitly. All of the consultants would explain what was going on and included us in our babies’ care.

In many ways their NICU stay was quite straightforward, there were no complications other than the fact that they were born so early. We just needed to be patient and wait for them to grow.

We ended up talking to other parents on the unit and joined a WhatsApp group so we could stay in touch. I made two really great friends who I'm still really close with.

On Father's Day, day 80 of their NICU journey, the twins were moved to the High Dependency Unit and were finally in a room together – the first time we were together as a family.

We knew that we’d have to go to our local hospital, Whipps Cross when the twins moved up to SCBU.

Bodhi was there for a couple of weeks and then Peggy until September as her lungs took ages to get better.

When Bodhi came off breathing support and was feeding well, as much as we didn’t want to separate them, we decided to take him home on 18 August. It was bittersweet, I felt like I couldn’t be fully happy as Peggy wasn’t there.

Our local hospital was also amazing - they'd let us bring Bodhi into the unit with us so we could spend time together as a family.

Peggy came home on 1 September with a feeding tube. Both twins were still under the neurologist’s supervision - Peggy had a grade three brain bleed and there were concerns about the impact of that.

Bodhi had brain bleeds as well, but not as severe as hers.

We were told that there was a high likelihood that they could have cerebral palsy, and I remember Peggy tended to turn her head to the left all the time. However by her six-month check, the consultant confidently said that there wasn’t going to be anything seriously wrong with her.

At their one-year (corrected) check, the paediatrician said that he was really happy with their progress, and they were discharged from both the physiotherapist and occupational therapist.

My work was incredibly supportive. They gave me around three weeks of compassionate leave and ended up introducing a new policy, where you can get up to 12 weeks of fully paid leave if you have a neonatal experience.

So in total, I was off work for nearly 17 months once I added on my annual leave. The twins were one (corrected) by the time I went back to work, so I thankfully managed to have some proper time with them which was taken from me when they were born early.

Peggy and Bodhi are two and a half years old now and they’re just perfect. We’ve now moved to Brighton and have managed to connect with other parents of twins, which has been really nice.

Reflecting on our neonatal experience is tough, but it just shows how strong my babies are.