How the system failed Daisy

I felt I was probably being unprofessional, but I couldn’t help myself. While the consultant, the medical students and the junior doctors were all discussing Daisy’s test results and charts with the nurse by the foot end, I stood by the cot and stroke her, one hand holding her tiny fingers around mine and the other hand caressing her head.

The nurses in the ward said they knew right away it was Daisy crying when they heard her. I now saw why, she let out a hoarse, ancient, moaning cry when we undressed her to examine her pale and fragile body. The sound was miles from the high-pitched, demanding scream of a healthy infant. She moaned and fretted and was clearly disturbed by the fuss we made with her. Maybe that’s why I was so touched when she let me soothe her, easing her head into my hand as I stroke her hair.

For the medical students Daisy was a rich source to learn infant neurological pathology. Her head lagged heavily at four moths of age where she should have been able to hold it up steadily and she had no gaze fixation. Instead, her roaming eye movements indicated she had vision impairment.

Her MRI scan was something of a sensation and indicated severe anomaly of the brain. Instead of flexing and extending all four limbs symmetrically when lying on her back, Daisy only used her arms, the legs peculiarly extended. Her pallor was striking, but what hit me most was her skin hanging loosely from her bones. I had never seen such a malnourished baby in a Western country, only on pictures from developing countries and in paediatric textbooks. And this was days after she was first admitted!

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Although clearly not a normally developing infant, no one around Daisy seemed to notice. Not a first child, the mother should have wondered why she never managed to breastfeed. But never mind the parents, they clearly had a number of issues. What I care about as a public health physician is the system. I don’t work with individual children (which is probably a good thing, given my impulse to adopt every child in need); I work with systems.

And the system designed to provide developmental surveillance and protection to Daisy failed her bitterly. The nurse who had seen and weighed her repeatedly had noted “normal developmental milestones”. Even if milestones are not a completely reliable way to assess motor development, this child was off the charts!

The fact that she after one month still hadn’t regained her birth weight should have sent a million signals to the nurse. Any medical student will give you the major causes of failure to thrive including both developmental disorders and psychosocial failure to thrive. Missed appointments or called-in weights are other signs to note.

The nurse finally referred the family to a GP. The mother seemed reluctant, she said Daisy ate well from the bottle, and although she seemed not to grow that much, mom wasn’t worried. Although parental worry is a strong predictor of something being wrong, absence of parental worry is not so sensitive a sign.

But the GP wasn’t worried enough to make any notes on it, having seen the baby only once and mom being quite relaxed. The social services were worried, but not primarily about Daisy, they were investigating domestic violence. Although there was an anonymous report on the infant not developing well the social services apparently lacked sufficient ground to make a home visit. So Daisy fell through the cracks of surely caring and knowledgeable professionals.

It took the watchful eye of a triage nurse at a hospitaI to spot Daisy in her mother’s arms, labouring to breathe, tiny, pale, and having what looked like seizures. Still, the family wasn’t worried, they weren’t even at the hospital for Daisy’s sake. But the staff insisted and Daisy was in the ICU in less than an hour. Now everyone worried – would she even survive?

And everyone wondered – how can a severely disabled child in a socially vulnerable family situation not be picked up by the welfare system they actually attended?  Why was there no communication between services? Why were no home visits made? Maybe someone was intimidated, maybe failing her infant didn’t fit with the nurse’s image of the mother. Maybe the nurse worried losing the family altogether. We don’t know.

But that’s what interests me. And if you think it can’t happen where you are, you’re probably wrong, because systems do fail. On the other hand, systems can also overdo things. To get it right, to provide universal services that reach all and pick up those in extra need are the mantra of us public health physicians. Our work is to make sure that Daisy and her likes don’t fall between the cracks, while first-time parents are not made anxious by weighing and measuring happy, healthy, thriving infants excessively.

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Daisy will not have an easy life: disability, social disadvantage, and a tough start will take its toll. As I pull my hand away I don’t know what to wish for her. But I promise her we’ll work on the system until we get it right! And maybe I wasn’t being so unprofessional after all, caressing, rather than assessing this baby. In a recent article published in The New England Journal of Medicine, a colleague described how sometimes our being humans before professionals can really mean something to those we care for.

I am sorry, Daisy, on the system’s behalf. I wish we could make it up for you. If nothing else, you should know that none of this is your fault.

*Daisy is of course not the real name of this infant. Photographs taken by Fanni Sarkadi Kristiansson

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