A few years volunteering as a medical student at the hospital youth club and respite care centre sparked my interest for a career in paediatrics. These experiences gave an insight into the lives of children and families outside the hospital, and I was constantly in awe of their positivity, energy and love for life despite the challenges they faced.
Seventeen years on, and I have no regrets. It is an immense privilege to care for children that families entrust into our care. I chose neonatology for the fast-paced intensive care setting, but also the more holistic aspects and opportunity to build relationships with families. It is also an exciting time for the specialty; we are pushing scientific boundaries and looking after children who would have previously not survived. As a relatively young specialty and largely evidence-free, strong basic science and clinical research are necessary to inform improvements in clinical care and outcomes.
Baby Jack* was five weeks old when he was transferred to our neonatal unit. Eigteen months before, his sister Mary had died when she was a few days old on our unit, and his mother Lisa chose to deliver elsewhere as she suffered from post-traumatic stress disorder. Unlike Mary who was also born extremely premature, Jack was doing well and was transferred to us to be closer to home.
I can’t remember what I said, the exact words I used, or whether I said much at all. I just made sure I was there to support them.
Then came the night shift I will never forget. I was the senior registrar on, and at midnight I was urgently called to see Jack on the special care baby unit. He had stopped breathing. His abdomen had become very distended. He was developing – what became evident – fulminant necrotising enterocolitis (NEC). I started bagging him and swiftly moved him to intensive care where he was intubated. I called the surgeons and asked the nurses to call the parents to come in. Jack was deteriorating rapidly and by 2am it was difficult to tell if his abdomen was blue, grey or black, or all of the above.
Worryingly, there was still no sign of his parents, David and Lisa. I phoned their mobile a few more times but it went straight to voicemail. I phoned the neonatal consultant Dr H to inform her that we had called the police to help. Dr H seemed very quiet on the phone. She went on to explain she was the consultant on-call when Jack’s sister, Mary, died a year and a half before. She imagined the parents would find it extremely difficult to see her again in similar circumstances. We therefore agreed that I would speak to the parents on my own when (and if) they arrived.
At 4am, Jack’s heart rate and oxygen saturations began to drop further. Thankfully, around that time the police called back - they had found David and Lisa at home. The parents had deliberately not answered phone calls as they were so upset and frightened. I managed to persuade them to come in and reassured them that a hospital chaplain would be here to support them. Just as you would expect of any parents losing their second child, David and Lisa were distraught and inconsolable. I can’t remember what I said, the exact words I used, or whether I said much at all. I just made sure I was there to support them. David and Lisa were able to hold Jack for a while before he died peacefully in their arms.
It is imperative that as paediatricians, we support, participate and lead research. We owe it to our patients and families – and Jack - to learn from their stories and keep searching for the answers.
"Did the parents come?" Dr H asked when she arrived at the unit. I nodded. I could see tears of relief; she had been so worried that Jack would die alone without his parents. Until this moment, I managed to fight back the tears. They were tears of sadness but also anger. Anger that we don’t fully understand NEC and prematurity. It was around this time that a research job at the Imperial College Neonatal Data Analysis Unit was advertised. Data from every baby admitted to NHS neonatal units were being brought together from around the country to help support research. It was a chance to tell Jack’s story and that of many other premature babies with NEC. Without hesitation, I applied for the job that week.
It is imperative that as paediatricians, we support, participate and lead research. We owe it to our patients and families – and Jack - to learn from their stories and keep searching for the answers. Jack’s story stuck with me not only because it started off my research journey, but also because it was the first death and ‘breaking bad news’ conversation I led on my own as a junior doctor. Supporting families through that difficult journey to come to a place of acceptance and peace is one of the most powerful ways we can make a difference.
Now as a consultant myself, I realise death does not become emotionally easier to deal just because one is more experienced or senior. Being a good doctor means having empathy, kindness and compassion, which also means you are likely to share in a family’s grief and sadness. It is important to acknowledge these emotions, be kind to yourself, and take the time to debrief and look after your team.
Cheryl Battersby is a Clinical Senior lecturer, NIHR Clinician Scientist at Imperial College London and Honorary Consultant Neonatologist, RCPCH College tutor at Chelsea and Westminster Hospital London. She is Principal Investigator for the neoWONDER research programme and is also the recipient of the 2021 Simon Newell Early Independent Researcher Award.
- *Names and other information that could identify someone have been changed.