Sarina

We’re in a side room of the maternity department, meeting for the first time who is soon to become our baby daughter’s lead consultant. Mum has done a covid PCR test, and we’re confirming our decision to take their advice of a caesarian section the next day, and to remain at this hospital that could only provide palliative care for newborns. We’d only arrived for the latest scheduled scan that afternoon, when we got told our baby’s heartbeat was present but that she hadn’t grown and was in urgent need of a different environment to have any chance of survival. We’d had confirmation that our baby had full Trisomy 18 almost four months earlier. We’d already been advised weeks before of the possibility that this first pregnancy could enter a crisis phase. But back at the day I was to become a Dad for the first time, which had been supposed to be on the other side of Christmas and new year, yet here we were in early December. All I really took away from our meeting was that if Sarina required six months in hospital she would get that care - at the same time there was the possibility in the backs of all our minds that nobody might be able to help either.

The fears were thankfully set aside when our first child was delivered, then wheeled down to the NICU with her buzzing Dad right beside her. Even though it was late in the day, feeling a sense of a new beginning it felt much more like it was early morning. As I slowly came back down to earth over the following hours I watched my daughter in her incubator whilst Mum recovered in the privacy of the bereavement suite we’d been given as a precaution. The chronic phase of our experience was underway and I longed for it to last forever. I dreaded the idea of us being moved to a private room with Sarina because that would signal we were into the next end of life phase. Although Sarina’s normal pattern over the next seven weeks included occasional relapses, interspersed with periods of remission, it was confusing to have to keep  reminding ourselves that we might not have long. Initially though as new parents we were struck by another round of shock not dissimilar to the feeling after confirmation of the diagnosis -  suddenly we were caring for our child, whilst experiencing a form of grief that at the time we had no understanding of. Mum had felt it for the healthy baby she’d been looking forward to. Now that we’d both finally met our child, how could we possibly anticipate losing her? Meanwhile, factors outside of our bubble were causing anxiety, none more so than trying to avoid contracting covid from outside the hospital, which would’ve meant us being kept away from our daughter. Having to travel home each night and then back again the following morning was also a challenge, since the hospital had no accommodation once mum had been discharged. We probably appeared calm and controlled as we greeted our baby and the staff who’d cared for her overnight, but we constantly struggled with inner turmoil and the confusion of seeing Sarina make progress within a timeframe we knew was limited - but how much so, nobody could say.

Support from the hospital along with taking care of ourselves included finding us a balance between the reality which felt positive most of the time and certainly felt quite normal, with being careful not to carry too much false hope. (Together4ShortLives: https://www.youtube.com/watch?v=FysnNLEnQ-s) On day 49 we’d arrived just a few minutes later than usual to find the consultant had started their rounds of the ward with Sarina. Later on we got reassurance there hadn’t been any fresh concerns raised because we had noticed something subtly different about Sarina’s behaviour as the afternoon went on, including a couple of minor episodes of vomiting. However, within 24 hours it had been confirmed Sarina had necrotising enterocolitis 

(https://www.evelinalondon.nhs.uk/resources/patient-information/necrotising-enterocolitis.pdf)

NEC is a disease that Great Ormond Street says ‘seems to be becoming more common, but it is likely that this is because more premature babies are surviving’. For our baby it meant she was going to die soon - Sarina wasn’t going to be one of the exceptional cases of babies with full Trisomy 18 who live for months or years. Our families weren’t going to be able to meet the latest member after all (during this stage of the pandemic no relatives could visit besides parents.) We’d kept them up to date on a daily basis with videos, pictures and messages. Now I wanted to fulfill the task of telling them all that Sarina was dying. Had the hospital not proposed moving us to a private room so family members could join us as soon as that could be organised, I could’ve maybe been more present (as mum was) in what turned out only to be a very short period of time. I remained physically in the space that Sarina had lived her entire short life, but once we were told she was dying I found I wasn’t entirely present either, which I’ll always feel a little bit of regret about.

Until Sarina’s death was confirmed all of my focus had disappeared, but now I could gather myself up again to carry her body out of the ward and into a private room, with my attention already turning to her funeral, and quite how the build up to this would be. It’s a religious requirement for Muslim bodies to be buried as soon as possible after death - so we only had three days to find a cemetery that would be reasonably easy to regularly visit.

We kept Sarina’s body at home with us for a night and also spent a full day together in the hospital room with her. This time, in a calm environment at least, helped us take in what had happened so very quickly. On the morning of her funeral we washed and dressed our little girl in a blanket. The funeral director drove us to the cemetery - Sarina’s resting body on my lap in the back of the car. The ceremony was led by the hospital’s chaplain who had delivered prayers for Sarina on the ward. Almost two and half years have since passed. For the rest of our lives we will crave what we cannot have - to have Sarina back with us. I can hardly recognise who we were as people back then, but the bond we have with our only child has only grown stronger with every new day.