A small child in intensive care

The first thing to say is that intensive care for small children is, on the whole, a story with a good ending. Most children who come to us go home.

That is worth knowing before anything else, because an intensive care unit does not look like a place with good endings. It looks alarming. This piece is about why it looks that way, and what is actually going on underneath.

Why a toddler ends up here

Children between one and five are admitted for a fairly short list of reasons. A chest infection or a bad asthma attack, where the child is working so hard to breathe that they need help before they get tired. A severe infection anywhere in the body. A seizure that did not stop on its own. An injury — a fall, a burn, a car accident, a near-drowning. Something swallowed or inhaled that should not have been. Occasionally a planned admission after major surgery, where the child comes to us already expected.

Almost none of this is anybody's fault, and the thought that it might be is one of the commonest and most corrosive things parents carry into that room. Small children are supposed to explore, climb, put things in their mouths and catch every virus that passes. That is their job, and it is how they build the immune system and the coordination they will need. Sometimes it goes wrong.

The room, and what is in it

• The monitorThe screen above the bed showing coloured lines and numbers. Green is usually the heart, blue the oxygen level, and the others are blood pressure and breathing rate. It is a display, not a treatment. Nobody is watching it constantly, because the nurse is watching the child.
• The ventilatorA breathing machine, connected either by a mask over the nose, or by a soft tube through the mouth into the windpipe. It does not take over from a child who can breathe; it does the work for one who cannot, or shares the work with one who is tiring. A child with a breathing tube cannot make any sound, which is distressing to see and is not a sign of how they feel.
• The dripsThin plastic tubes into a vein, giving fluid, medicines, sometimes nutrition. The pumps beside them count what is going in. A child may have several, and the number of drips is not a measure of how sick they are.
• The sedationMost children on a breathing machine are given medicine to keep them settled and comfortable, because a tube in the throat is not something a three-year-old will tolerate awake. They are not unconscious in the way an anaesthetic makes you unconscious; they drift, and they often hear.
• The peopleIn most units a critically ill child has a nurse assigned to them and nobody else, for the whole shift. That is the single biggest difference between intensive care and a normal ward, and it is worth more than any machine in the room.

What you can do, which is more than it feels like

Parents often say they feel useless in an intensive care unit, surrounded by people doing things they cannot do. That is the wrong way round, and the staff know it even when they are too busy to say so.

• You are the one who knows this childYou know how she sounds when she is uncomfortable, what her face does before she is sick, how she usually holds herself. Nobody else in that room has that information, and it is genuinely useful. If you think something has changed, say so. You will not be wasting anybody's time.
• Your voice is a treatmentTalk, read, sing, tell them what day it is. A sedated child is not absent. Familiar voices reduce distress in a way no drug does, and there is no wrong thing to say.
• Bring the things from homeThe particular toy, the blanket, the story that gets read every night. Ask before you put anything in the bed, but ask, because these things matter more here than they do at home.
• Ask, and ask againNobody expects you to understand this the first time, or the fourth. Ask what a machine is for, what a number means, what the plan is for today, what would have to happen before your child could go home. Writing questions down as they occur to you is not fussy; it is what experienced parents learn to do.
• Look after yourselfEat something. Sleep when you are told the night will be quiet. Take the offer of a break. A parent who collapses on day three is no use to a child who may need them on day ten, and the staff would far rather send you to the cafeteria than see it happen.

Some things that surprise people

• Progress is not a straight lineChildren get better in steps, with bad afternoons in between. A worse day is usually a day, not a direction.
• Small children recover faster than adultsOften startlingly so. A child who looked desperately unwell on Monday can be sitting up and demanding a screen by Thursday.
• They may be unlike themselves for a while afterwardsClingy, unsettled at night, back in nappies they had grown out of, angry. This is normal and it passes. Tell your doctor if it does not.
• You may be more affected than the childSmall children often remember very little of it. Parents remember all of it. If you are still carrying it months later, that is common and worth talking to somebody about.