When your brain turns to mush

She was born at term, after a normal pregnancy and an uncomplicated delivery. All was well, until her mother developed a fever 3 days later. Her GP prescribed some antibiotics. Baby A wasn’t feeding that well, but her parents didn’t get too worried until a day later, when she started crying and simply wouldn’t stop. At that point, they brought her to A&E.
Unfortunately it turns out that they were already too late. Baby had a fever, so the A&E doctor did a full septic screen (this includes blood tests, a chest x-ray, urine sample and lumbar puncture). We do loads of these screens on miserable, febrile babies (I used to do about one every every week of nights when I was working in Children’s A&E), and they usually come back negative. However in this case, the spinal fluid – usually clear and with a consistency barely thicker than water – was like pus – Baby A had meningitis.
I first met her 2 nights later, when she had been transferred to the neonatal intensive care unit. She had had a brain CT scan earlier in the day, showing multiple infarcts (i.e. strokes). In the context of meningitis, this would be due to inflammation in the blood vessels of the brain leading to reduced blood flow and the brain tissue lacking oxygen in the territories supplied by the vessels in question. I noticed that she had an erratic breathing pattern – she would pause for up to 10 seconds, then suddenly gasp and breathe rapidly for another 10 seconds. I wondered if she was having a seizure. Then she started to jerk her head and one arm rhythmically. She had already been given phenobarbitone (an anti-seizure medication) a few times over the last 48 hours, so I loaded her with phenytoin (another anticonvulsant). I also wanted to intubate her and put her on a ventilator to support her breathing (there was a risk she wouldn’t start up again after a long pause, even though a blood gas test showed she was eliminating carbon dioxide and oxygenating sufficiently), but the nurses were resistant, saying she had been breathing in this way for the past 48 hours! So I ended up ringing the consultant again (the first time was prior to the phenytoin) just so I could tell them it was on her orders.
Baby A remained on the ventilator for about a day, then her breathing seemed to become more regular, and they took the tube out. The following night brought a new problem: her blood pressure, which had always been on the high side, rose until it was higher than that of an adult. An increased blood pressure, decreased heart rate and erratic breathing together form Cushing’s Triad, a late sign of raised intracranial pressure. It is not often seen in babies because they have an open fontanelle (soft spot), so they have a bit of ‘give’ when the brain swells up. Still, we treated her for cerebral oedema (by giving 3% saline), and it seemed to hold things for a while. Towards the morning I did a cranial ultrasound scan, which showed that the ventricles (the chambers in the brain which make the cerebrospinal fluid) were massively dilated – hydrocephalus. This is another common complication of meningitis in a baby. Assuming she survives, she would need neurosurgery to place a shunt to drain the fluid.
So all in all, a disastrous situation. I don’t mention the parents here, because as I was on night shifts, I never had the chance to meet them. I hoped that by presenting my cranial ultrasound scan findings and the events of the weekend at the Monday morning grand round, a sensible decision would be made regarding the direction of this baby’s care (i.e. intensive or palliative).
I was therefore disappointed to learn on Wednesday that things were still uncertain, and that she was back on the ventilator. Apparently they had agreed with the parents that if baby stopped breathing, they would put her on the ventilator until they could come in and hold her while she was taken off and allowed to die. So that all happened, but they then changed their minds about taking her off. I think it is quite unfair to leave the decision to withdraw care up to the parents. It is also unfair not to perform tests which will help to predict the neurological outcome, even if they will not currently alter the treatment. It is hard enough as someone who has been through medical school to understand the implications of each problem with each body system the patient has, never mind put it all together and try to guess how the person will function as a whole at the end of the current episode of illness (making the rather big assumption here that it will not kill them). I think part of our responsibility as doctors is to gather all the information we can – in this case, the brain MRI, full EEG and paediatric neurology consult that were not available to us over the weekend – and draw it into a recommended course of action, presenting the information in such a way as to guide the parents to the correct decision, and make them feel they have been empowered to make it. Some people might argue that this is a rather paternalistic view, but I think that the alternative is just irresponsible.

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