“Despite everything, I am in a better place now.” – Suki’s story #Neonatal Feelings

I found out I was expecting MCDA twins in late January 2020. They were due to be born in September 2020, and I was told that they would most likely be born a little earlier. As the pregnancy went on, they discovered that I had a shortened cervix that was opening so, to prevent the girls from being born too early, they had to put a stitch in to keep it closed.

Even with the stitch, the scans revealed that my cervix was still opening, so they had to monitor it closely. One morning while showering, I started passing clots the size of golf balls, or so it seemed it me. I went straight to the local hospital. At that point, I was 23 weeks pregnant and it was the middle of the Covid-19 lockdown.

After being examined at the local district hospital, the doctors noticed a 'bulge' and decided to transfer me to a hospital that could handle premature babies and had two available cots. They started the necessary drips, and a doctor came to talk to me about comfort care.

Due to the Covid restrictions, I was all alone and didn’t fully understand everything being said to me. It felt like I was in another world.

Eventually, they found a hospital with a Stage 3 unit and two available cots, about an hour away. I was transported there by ambulance. After more tests, my partner was allowed to come and see me around 11 pm, and I was informed that I was going into labour.

Throughout that night, I met doctors, nurses, consultants, trainee doctors...nothing seemed to register with me, and I couldn’t understand at that point what it meant to have the girls so early. I gave birth naturally after 1:00 am the following day, but I didn’t see my girls as they were taken away from me immediately. It’s a blur, but I think I saw them the following afternoon.

When I was wheeled into the NICU, it was eerily quiet. I saw incubators and tiny babies attached to tubes and monitors. When I was brought to my girls, I couldn't remember my initial thoughts or feelings. They were so small, with wires attached to them, and the monitors kept making noises.

As the day went on, I was asked to try and express milk, which was difficult since it was so early at 23 weeks. I did my best to pump as much as I could. I missed my eldest daughter, who couldn’t visit due to the restrictions.

Visiting the girls became my new routine. We learned how to comfort hold them, change their nappies in the incubator, read them stories, and play prayers and music. We also learned how to feed them via the tube. Holding them was amazing but frightening when their stats dropped, as being out of the incubator was stressful for them.

Once I was discharged, my life revolved around spending all my time in the NICU, pumping, and calling the hospital every few hours each night. Over time, I learned to recognize the signs of their distress, understood the stats, learned about insulin levels, medical terminology, and the blood transfusions they needed.

Four weeks later, twin two got very sick and needed to be transferred to St. Thomas’s in London because of suspected NEC. Again, I didn’t fully understand the seriousness. Their dad, who has a medical background, broke down in tears while asking our friend to look after our eldest so we could go to London with twin two. Seeing him cry was upsetting, but I didn’t grasp how serious things were and thought he was just letting out his emotions.

Twin two was so poorly, white as a sheet, and unresponsive even when blood was taken. I didn’t realize her body was shutting down. After hours of preparation, she was transferred to London, stabilized, and scheduled for surgery to assess the damage to her bowel.

When they asked us for consent to operate, I was told that if her entire bowel was dead, they would stitch her up and bring her back to say goodbye as there would be nothing they could do for her. Hearing this felt like being hit by a bus; I naively believed everything would be fine.

Long story short, the surgery was successful. In the meantime, we had to split our time between London and Kent, where her twin sister was. It was hard having three children in three different places, but we managed. Eventually, her twin sister was transferred to London so they could be together. I spent every waking moment by their incubators, doing their daily cares, holding them, reading stories, and watching them get extubated and re-intubated when they couldn’t cope.

I felt guilty going to the hospital accommodation late at night as I felt I should be by their incubators. The situation was heart-wrenching. I still had to pump, knowing I wasn’t producing enough milk for one baby, let alone two. I felt like a failure on every level, hating my body for letting me down.

By summer, everyone told me to take a break and enjoy the sun, but I didn’t see the summer of 2020. I was at the hospital from dawn till late at night. My partner and nurses noticed I wasn’t coping well, but I thought I was fine until an appointment with the hospital psychologist revealed that I was like a robot, not eating or talking properly.

Four years later, I now understand what the doctor meant by comfort care. Those conversations and experiences still haunt me. In 2022, I was pregnant again with twins, and instead of happiness, I felt dread, convinced I would lose them. I bought tiny baby clothes with the intention of burying them. Thankfully, I made it to 36 weeks, and they only spent a few weeks in the hospital before being discharged.

The entire experience has deeply affected my mental health, leaving me with PTSD, social anxiety, and a sense of isolation. Despite everything, I am in a better place now. The experience has taught me not to give up. These babies are little warriors, beating all odds, and their strength is something to admire. They are true blessings.

We are extremely lucky to have five healthy children and will always be grateful to the NICU staff for their kindness and compassion. They felt like gods, taking care of these tiny beings and instilling belief in their parents. The love and care they show to families and babies is unparalleled.