On the first of December I lift the ban on all things Christmassy. I really enjoy Christmas and I’m especially excited this year as it’ll be the first one we’ll spend with Squidge.
But as much as I enjoy it I get Christmas fatigue if things start too early. So when Santa’s Grotto was set up in my town centre in the middle of November I tried to ignore it.
Then I noticed that this year all money raised will be donated to the local neonatal unit (not the one I work at) so that they can buy a portable ventilator. This is a piece of equipment not available in most neonatal units.
In some cases we reach the stage where the baby is so sick we don’t have anything else in our not inconsiderable arsenal to try. Once this point has been reached we have a discussion with the parents about withdrawing treatment from their baby. Sometimes the baby will die much more quickly then we expect and so withdrawing treatment isn’t an option.
However, if possible we try to prepare so that the parents have time to say goodbye.
So that they can hold their baby and cuddle them for as long as they want.
So that they can be with them at the.
We try to give them all the information they need and so we support them in any way we can. Some parents wish to have their baby baptised or blessed, others have family and friends who they want to meet the baby, others need to arrange care for their other children.
Many of the interventions we use are painful and almost brutal but we use them because they can save lives.
But for some babies any treatment that we do continue to give will not save their life, it will just prolong their suffering.
This preparation used to be called withdrawing care but we never stop caring for the baby. We keep them as comfortable and pain free as we are able, we continue to change their nappies and bedding if they become soiled and we talk to them and comfort them right up to the end.
Withdrawing treatment almost always involves switching off the ventilator that has taken over breathing for the baby and removing the breathing tube. Once the tube is removed the baby usually passes away within a few minutes although it can sometimes take longer.
This sounds painful and distressing for the baby but it isn’t. We continue with strong pain relief, increasing it if necessary. The baby is so sick and so tired that once the ventilator is turned off their heart beat slows and then stops. They don’t suffocate or gasp for air, they quietly slip away in their parents arms.
Because they are ready.
A portable ventilator would enable parents to take their baby home before treatment is withdrawn if they wish, rather than their child dying in the hospital. The baby would travel home by ambulance, continuing to be ventilated until the parents are ready.
Taking their baby home is something that too many parents with children on NICU aren’t able to do. They talk about nurseries they’ve lovingly prepared or their decorating plans if their baby arrived early. They show me photographs on their phones, so I can see the colours they’ve chosen, the pictures and wallpaper borders, the patterns on the curtains.
Sometimes their babies never use their room.
In an ideal world we would give all parents the opportunity to take their sick baby home before they die but we don’t have the equipment.
Even though neonatal units are part of NHS hospitals and the staff are paid by the NHS we rely on charity fundraising and donations for a lot of the equipment we use. A portable ventilator isn’t a piece of equipment needed for day to day care on the unit so management won’t provide us with funding for one.
But in the new year, one neonatal unit will have a portable ventilator so that they can help parents to take their babies home, to use their rooms before they die.
Thanks to Santa and his elves.