"I was fraught with anxiety" - Bryony's story

When Bryony's son, Elias, needed neonatal care, the experience was made even more difficult, as COVID-19 restrictions meant that Bryony and her partner could not visit at the same time.

When Elias was born, I was utterly over the moon. Our family was now complete. He was a bit small, weighing just 5lbs something at 37+5 weeks, but we were told that there were no other concerns.

After a few hours, my husband got sent away and I had to face the reality of spending three nights on the postnatal ward by myself. As we started to settle in, the nurse did the rounds. She looked at Elias and told me that he was breathing a bit fast and took him into the consultation room next door. I got brought in five minutes later. What I didn’t expect was to walk in to see my son fully wired up, all clad with oxygen strapped to his face. “Your son is very sick” the neonatal nurse said. Everything came crashing down.

Elias got transferred to the neonatal intensive care unit downstairs. When I found him, he was incubated, and the various wires rendered him completely unrecognisable. His breathing was strangely mechanical, and I quickly learnt that was because he was on a ventilator. The staff told me he had some sort of infection that would be confirmed with blood cultures the next day. They had started antibiotics, but no one was very optimistic. They kept telling us that “there was always hope” and other awful cliché phrases when they wanted to dance around the truth.

A few hours later and he was deteriorating rapidly. There was a constant buzz of doctors and nurses surrounding him, behind this awful metal blind. None of them would talk to me, but would just look at me every now and then. Eventually I was told they were moving him to a specialist intensive care unit at Royal London. Things were bad.

The maternity unit didn’t want to let me go, but I didn’t want to stay in a ward full of women with their healthy babies. The matron didn’t seem to understand why I wouldn’t want to stay there when my son was in NICU in another hospital. After negotiating with the duty midwife, I managed to discharge myself. By now, I had walked up and down copious amounts of stairs and post-birth recovery felt like a myth.

The first night at Royal London was the worst. Elias arrived via neonatal ambulance at around 1am and James and I were so tired that we fell asleep on the sofa in the parents' room. The doctor took pity on us and found us a room for the night, but politely told us that due to COVID-19, only one of us would be able to visit a day. When we awoke, things had gotten very grave, resulting in several blood transfusions and maximum life support. From then on, James and I took it in turns to see him. One day at Royal London, followed by the next day at home looking after our two year old daughter. When I was at home, I was fraught with anxiety, and when it was my day to visit him, I felt completely numb. We lived from phone call to consultant round, hanging off every and any word they would say to us.

In an act of desperation, I turned to prayer, and something worked because the tone of the staff changed. The antibiotics had started to kick in and his infection marker went down. The consultant explained it was now a question of “when” he came home and not “if”, and if he had any long-term complications. I don’t think I’d ever been so happy in my life. His blood cultures came back as positive for GBS – a strep B infection. Something I’d always thought of only as a sore throat but it can be lethal in babies. He also had a very severe case of septic shock which the doctor would later tell us was one of the worst she’d seen. Each day I would walk in, a piece of equipment had been rolled away. By day five, the infant ventilator had been unplugged and by the end of the week we were left with nothing but a few wires and tubes.

Eventually Elias was transferred back to the Special care unit at Whipps Cross where I was greeted by the nurse who saved his life. I’ve never been so grateful to anyone before, and I wish I had taken down her name so that I could sent her a huge bunch of flowers, though that wouldn’t feel sufficient. The staff were amazing in making sure he learnt how to feed again, and it wasn’t an easy road. But after spending a few full days feeling like a factory cow and some teething problems concerning keeping the weight on, we made it. To my detriment, I was told again and again that they didn’t think he would get through the first two nights, but he did.

I am so grateful Elias survived this ordeal. I’m also so glad that when things were at their lowest with little hope that his team never gave up on him. The nurses who looked after him loved all the babies and treated Elias as nothing less than a miracle. He was treated with such care and dignity that walking away from him at the end of the day was that little bit easier, though not easy at all. I have since read many other stories, and Elias was one of the lucky ones. I want to put this story out there to say that there’s always hope. Even when things are so bad that there doesn’t seem like a way out, there is.

It’s been a very trying couple of months filled with tears, confusion and thousands of nappies, and we have had to shield and self-isolate from everyone we care about. However, I could not be any more grateful that Elias is now healthy.