“We drew upon our babies’ strength to keep us going” – Abbie’s story

It was a huge surprise to me and my husband, when we found out we were expecting -identical (MDCA) twins in July 2021.

We quickly found out that whilst some twin pregnancies can run very smoothly, it can be incredibly common to encounter many risks. These include Twin to Twin Transfusion Syndrome, Selective Intrauterine Growth Restriction, and very often premature birth.

It became clear in November that my placenta, which was working hard to deliver nutrients to both babies, was beginning to show signs that it was insufficient. We were referred from our local hospital to one in London about eighty miles from home.

At Queen Charlotte’s and Chelsea Hospital, we had frequent scanning and checks. The aim was to get the babies to a weight and size which would give them a good chance in NICU.

At 27 weeks and five days, on 15 December 2021, I developed pre-eclampsia and my babies had to be born. It was a worrying morning because there were no neonatal cots available immediately and for a short time, I was worried I would be transferred to another hospital.

Fortunately, our baby girls were born at 4:10pm and 4:12pm. Twin One weighed 677g and Twin Two just 500g.

Both babies were taken from theatre by a good team of nurses and doctors, straight to NICU. They were both on CPAP breathing support and I recovered from the birth. Unfortunately, our Twin Two showed signs that something wasn’t quite right - her tummy was becoming very distended as the air was going into help her breathe.

At 3am, just eleven hours after her birth, she was transferred to Chelsea and Westminster hospital, where a team of gastro doctors and consultants could review and determine her next steps.

Over the course of the next week, I was eventually able to hold our Twin One, seventy-two hours after her birth. However, our second baby girl, remained in a separate hospital and my husband visited her daily. Once I was well enough to be discharged, our Twin One, joined her sister at Chelsea and Westminster Hospital and I was finally reunited with our Twin Two. I held her for the first time a week after her birth.

This was the beginning of a long, heart-breaking, traumatic and frightening few months. My husband had to take 20 weeks off work and we even had to stay in a hotel for the first three weeks in London, as I recovered from my caesarean section.

Twin Two had a bowel perforation just before Christmas and required two surgeries to create a stoma (one high and one low). The first surgery had to take place in NICU as she was too sick to even travel to theatre - she only weighed 500g.

Over the coming weeks, they overcame extended periods of mechanical ventilation, episodes of sepsis, conjugated jaundice, inguinal hernia repairs, ROP grades two and three, laser eye surgery and eventually a stoma reversal. Their strength and resilience was incredible and we drew upon their strength to keep us going.

The girls being born so small and so prematurely meant that their NICU stay was full of many struggles. As a mum of twins, it often felt that one baby could have a good hour, morning, or even day, yet the other would be really struggling, so our hearts never felt full joy.

As our babies had different medical needs (Twin 2 had a stoma and required longline TPN in High Dependency, whilst awaiting stoma reversal), they never shared a twin cot and only met twice in their whole NICU stays.

We found this really hard, and it felt like many other sets of twins came after us to NICU and left before us. This is a common feeling amongst parents but every baby’s path is so individual - you have to stay focused on your own.

NICU was incredibly tough. Hope came often from volunteers who visited the unit, or other parents slightly ahead of your own journey. These conversations would often lift the day when you felt like forever had passed and still there was no sight of home.

Friendships with other parents are so crucial in NICU. No other person knows NICU like those who have been surrounded by mechanical ventilation, lines, monitors, beeping and uncertainty.

Twin One was discharged after 107 days and Twin Two joined her sister at home after 146 days. This marked the end of our 160-mile daily round trips to the hospital. It also marked our daughters being reunited for forever.

We spent many hours fearing they would never know each other. Seeing them finally together, it was clear, they knew. Those weeks where we had only one baby home, saw us have to draw even more strength too.

Now we have had the girls home for three months together and we can’t believe we made it this far. We often said to each other, ‘we have to endure this, to get our forever with them,’ but it was never easy.

To be pregnant one minute and then have your babies in hospital for over one hundred nights was tough, as was the geographical distance between our babies, as there wasn’t parent accommodation attached to our NICU.

We have made lifelong friendships with parents we met and whilst the journey in NICU is arduous and long, we promise that when the end comes, it comes incredibly quickly. I never believed in NICU graduates but it is true!

We would like to thank every consultant, doctor, registrar, nurse and pharmacist, who cared for our babies, and for their continuing care. We are forever grateful and we hope that our journey brings hope to other parents of very small pre-term babies.