As a paediatric intensivist, the majority of my patients, for most of their stay on PICU, will be intubated, ventilated and sedated. This provides little opportunity for me to do one of the things I have loved about being a paediatrician – interacting with children, discovering their personalities as they emerge from the grip of illness and often go on to make a full recovery.
Intensive care does give me an opportunity to care for children at their sickest, give them definitive, practical and often life-saving treatment during acute illness, and I love this. And every so often I still get to play peek-a-boo with a toddler and draw out a smile. Then there is the unexpected bonus of a job in intensive care, which is standing with parents and families in a time of anguish.
Day after day, mothers and fathers (and grandparents, siblings and foster parents) show up by their little one’s bedside.
When it works at its best, and as it should, the wonderful team of consultants, nurses, physios, psychologists, technologists (who support our retrievals) and dieticians I work with, try to wrap around families and bolster them through the nightmare of watching their children in extremis on an intensive care unit. We give them an opportunity to talk, cry and laugh and make sure they are fully informed and have access to the support they need.
Day after day, mothers and fathers (and grandparents, siblings and foster parents) show up by their little one’s bedside. They read out loud, sing, pray over them, keep vigil through the night, dozing off on the chairs, holding their child’s hand. These parents and carers witness things that most people barely understand can be possible for children to go through and they hold their positions rather than running away traumatised and terrified.
One family that sticks in my mind are the mummy and daddy of a little girl called Alice* . She was born with a congenital cardiac condition. Alice had her heart surgery on day six of her life. Following this was a slow but steady process of recovery where she got stronger and healthier. This often manifests with our patients having progressively less plastic in them – the chest drains come out, the invasive lines for multiple medications, the breathing tube. She came out of her cot and could be cuddled and washed by parents and we made plans to discharge her to the ward.
This is such a happy time for families. They’ve been holding their breaths, unsure whether the worst is about to happen, and it’s often only at the time they finally get to leave the unit that they can breathe again and dare to hope that it will all be ok after all.
A few days into her discharge, we were called via a crash call to the cardiac ward, only to find Alice desperately unwell. She had collapsed unexpectedly, and an agonising decision needed to be made by the cardiac surgeon, supported by intensive care and cardiology teams, about whether or not a further operation could save her. Alice’s parents stood by completely helpless and watched as all these events took place. It’s hard, as a parent myself, to fully imagine what that felt like.
I, along with other team members, tried to offer them hope, while walking that tightrope of medical uncertainty and all the unknowables.
Alice did go on to have further surgery, which was ultimately successful, but this time her course was stormier. She had a run of ECMO – mechanical life support- and then developed necrotising enterocolitis, severe inflammation of the gut, which required partial removal of her bowel. Again, she slowly got stronger as the days and weeks passed by. Every day and night, Alice’s mummy and daddy were there by her side. The plastic came out, we started to feed her again and once again began to make plans for her to go to the ward.
Our team continued to try and bolster Alice’s parents. When I looked after her (and them), I offered smiling eyes (remember we are in Covid times!), I tried to explain all we were doing, including decoding the medical terminology. I, along with other team members, tried to offer them hope, while walking that tightrope of medical uncertainty and all the unknowables. We laughed together and I listened to stories about their lives outside of PICU, which had become their world. I watched them connect with and give and receive hugs from other parents who were also living the same difficult reality.
Alice did get discharged to the ward once again. She had a little blip once there with a line infection which got better once the line was removed and she was treated with antibiotics. We had become quite protective of her on PICU and her family, as often happens with our long-term patients, so once we discovered the news of the infection, I was asked to go and review her and offer some support to the medical team if needed. I greeted Alice’s Dad with a smile and when he saw me, he burst into tears! I realised that seeing me took him back to all they had watched their little girl go through on PICU and the trauma that came with that.
There’s no doubt in my mind that often the families are just as much the warriors fighting on for their loved ones.
Alice was discharged shortly after this at three months of age. Her parents brought her to PICU to say goodbye. She was dressed in a beautiful little outfit which hid the multiple war wounds she had endured during her long stay. We all crowded round cooing and happy for them, and then she was placed in my arms by her Daddy. She looked up at me and gave me a beautiful gummy smile. I felt so proud to be the one that got a cuddle! A tear may have slipped out! They left to continue their lives and make happy family memories that will hopefully heal their sad ones, the future still uncertain.
I got a card from them a few weeks later, thanking me for my part in Alice’s care. On the front of the card, it had a lovely picture of her on it with that wonderful gummy smile and it said: ‘Alice - Heart Warrior’. She certainly was that, but there’s no doubt in my mind that often the families are just as much the warriors fighting on for their loved ones.
Toyin is an ST8 PICM trainee at University Hospital Southampton.
- *Names and other information that could identify someone have been changed.