Xander's Story: Prematurity and NICU in the time of COVID-19

Xander was born at 31+2 due to reduced/next to no fetal movements. It turned out he had absent end diastolic flow and that only one artery was supplying him with oxygen, blood and nutrients, which was not enough. He was born via emergency C-section and entered this world on Thursday 20th August at 16:49 weighing 2lb 5oz. 

He was immediately taken to the resuscitation trolley and had five minutes of resuscitation, then they ran out the theatre doors with him with an oxygen mask pressed against his face and his tiny little body in a plastic bag. I never got to see him up close, kiss him or hold him. Next time I saw him he was in an incubator on CPAP and he was so small. As time went on, he moved from NICU to NHDU within the SCBU. That was where I got to hold him for the first time. All of this happening during COVID-19 meant that only one parent was allowed on the unit at any one time. He didn't see both of his parents together until we left the hospital with him when he was 5 weeks and 2 days old, weighing 4lb 6oz.

When Xander was 10 weeks old (1 week corrected), he had a seizure. It was terrifying. Paramedics arrived, quickly suctioned his airway and ran to the ambulance. We went off to the hospital with blue lights and sirens with a pre-alert to the hospital and there was a whole team waiting in resus for him. They placed him on a resuscitation trolley like in theatre when he was born. Visions came flooding back to me and I couldn't take anything in. There was my baby laying there again, being poked with needles, being suctioned and having line put in. He didn't make a sound, exactly like when he was born. I was in a panic. I was shaking. I couldn't go through an admission with him, not during COVID-19 with only one parent being allowed at any one time. I couldn't do it. But I had to. 

We were eventually moved from resus to a monitoring bay. He was then placed in an open isolet as he was only 6lb and only 1 week old (corrected).  Again, I sat there looking at him through plastic sides. No one asked if I was OK and his Dad couldn't join me. I thought I'd almost lost my son again and I had to deal with it by myself again. He spent three days in hospital. I felt so isolated, so lonely, so scared. 

I thought my mental health was ok, until my partner went back to work after being furloughed and again found myself alone and isolated, trying to keep a little one safe. I had a breakdown. I couldn't sleep, or eat or function properly. I was having constant flashbacks. Once this breakdown happened and professionals knew, my treatment was mixed - I have diagnosed mental health problems and my diagnosis was put down to those, not the traumatic experiences I had had. Along with this I was too anxious about taking my son to groups - to whatever groups were running due to COVID-19 restrictions - due to his prematurity. My partner then moved jobs and I felt like he was with me more and not just in the evenings and overnight for five days a week.

Xander is now 16 months old and still under the neonatal team and dietician. I fear everytime he goes for an appointment, to the doctors or when they send him to hospital (it has happened 3 times now) that I/ we are going to experience everything again. I have a constant fear of it. It is now at a point where wearing a face mask panics me due to wearing one constantly on the unit and my partner has to attend appointments with me even though there is only one parent allowed at any one time. This was the following a slight argument with someone in the hospital reiterating this rule and my response being "Have you any idea what it's like having to sit in NICU by yourself, listening and trying to take everything in to pass on to your partner who lives with you and has a right to know and be part of these things? Do you know what it's like to have a constant fear of something bad happening at an appointment?." After that they allowed my partner to stay and I did apologise to the HCA if I was blunt with her. 

Xander has had COVID-19 and I didn’t sleep the entire time, I was constantly monitoring him. I was terrified he would have a seizure due to a fever or stop breathing. I couldn't bear anything happening or another hospital admission. I've always said to his dad that if Xander needs to be admitted again, he will have to go with him as I can't do it anymore but I know deep down, if it did happen I'd be the one with him as I couldn't trust anyone else with my little boy’s life. 

I would like to say a huge thank you to all the staff on the SCBU and Tiny Lives for their charity work to supply social workers, counselling (which I have accessed), parent and sibling packs, miniboos (1 for child and 1 for parent), incubator covers, nests and various other things.

Thank you to Danielle Robinson for sharing her and Xander’s story.