How my 23-weeker and I were saved by trusting our nurses and doctors
Three years ago today I gave birth to the tiny 1lb scrap of flesh that was to become my feisty, funny daughter Alexa. I can’t wait to mark the anniversary by visiting St Thomas’ neonatal unit to show them what they have given us. And this helps me reflect on what made my experience so different from the very public collapse in the relationship between the parents of Ashya King, who took their son with brain cancer abroad for treatment, and the clinicians caring for him.
Trust can be easily shattered by the raw emotions that drown parents who have a very sick child. I spent countless hours and weeks peering into an incubator, willing my tiny 23-weeker to live. I know how fear can grip you so tightly, you can’t breathe.
Watching your child fight for life is overwhelming. You are desperate for answers, facts, reasons – somebody or something you can hold responsible, as you will never feel more out of control. And while all your instincts are screaming at you to help your child, you have to endure the awareness that there is nothing you can do.
Luckily for me, I did have faith in the expertise and compassion of Alexa’s doctors and nurses through that five-month rollercoaster. I think it came down to the unit’s culture and transparency, and how it included us in decisions.
I felt it from the start; when the sister looking after my daughter in those first hours promised to hold and sing to her if she died and I couldn’t get there due to surgery, I knew she would. Actually, it wasn’t all instinct nor blind faith in clinicians – my trust was earned.
Crucially – and this is about culture – from the first time I walked in, the unit was clean and calm. The nurses were professional, skilled and caring. Individual nurses’ judgement was trusted, but there were also clear leaders. Nurses and doctors worked together and listened to each other. It felt like everyone was working towards the same goal – my daughter’s survival. Consultants and nurses were always up to date on her condition.
I never felt excluded from my child’s care. Nurses helped me to somehow be a mum in this strangest of circumstances, even if it was only changing her tiny nappy or mouth care. Decisions seemed transparent. Not only did I join the daily consultant round when her progress, or lack of it, was discussed, but my questions were invited and my opinion felt valued.
When she started struggling at eight days and surgery was mooted, we refused to take that risk until the doctors could prove it was needed. For three days, every time I walked into the neonatal intensive care unit (NICU), the consultant was examining her. Finally, he said: ‘I can’t give you absolute evidence, but all my instincts are telling me we have to get her to surgery to give her a chance.’ And because of the way he cared for her and monitored her, we could trust him. He was right – she had a perforated bowel – and that trust had saved her life.
It worked both ways. One day my usually bolshy daughter was strangely quiet. I knew something was wrong. Within a few hours, supported by a nurse who had got to know Alexa, cultures were started. By the end of the shift she was back in NICU but the infection was identified, and targeted, more quickly.
But even I had struggles. For weeks I was obsessed about the amount of total parenteral nutrition she was getting. I thought she should have 150ml rather than 120ml, or something – I can’t even remember now, but then I was a woman possessed. I lobbied, fumed and vented despair at any doctor or nurse unfortunate enough to cross my path. And this was only over something that might give her a few extra ounces rather than save her life.
She was nil by mouth after stoma reversal surgery. During his round the surgeon said milk could be reintroduced that afternoon. The nurse later refused. I argued while my daughter screamed, before I left for a sleepless night. I was also concerned that her wound showed signs of infection but no antibiotics had been prescribed.
I told the matron – I knew he would get it sorted. To my horror, though, he made it a ‘critical incident’ which was investigated and reported to the unit lead. He insisted: ‘We treat everything as a near miss.’ I went to the unit lead, apologising for complaining when his team had saved my daughter’s life (countless times). But it was brushed aside and he said that if he didn’t receive ‘incidents’, he knew staff weren’t reporting properly. And how else were they going to improve?
My trust restored, I could again leave my precious possession in their capable, caring hands. Incidentally, the feeding hadn’t been noted. The nurse’s hands were tied.
I believe my daughter had the best care, but not all parents felt the same – some had few good words for it. Even in the best units, there may be nothing a nurse or consultant can say to reassure a mum or dad that they are doing all they can.
But I am so grateful to St Thomas’ for not only giving me my healthy, loving daughter against the odds, but also saving my sanity. Alexa and I left our unit able to fully enjoy life as a family – including a Peppa Pig birthday cake tonight – but always happy to go back to see our neonatal family. It is a shame that other parents, like Ashya’s, have to endure such a terrible journey without the trusting relationship that can accompany it.
Alexa and Elaine Cole
About the author
Elaine Cole is deputy editor of Nursing Standard