Doo do do
Do do doo de do du do
That’s supposed to be me singing ‘Going Home’ the theme song from Local Hero.
On NICU going home is, for most parents a time of celebration. Something that they’ve been waiting for, sometimes for just a few days but sometimes for months and months.
We love going home day, it’s a large part of the reason why we do the job we do. We want to be able to send all the babies home and a day when this happens makes everything worthwhile.
It’s a time of hugs and well wishing and tears
Of cards and chocolate and cake.
Of making sure they’ve said thank you and goodbye to their special members of staff.
Of promises to bring the little one up to see us when they come back for their follow up appointments.
But every so often this is not the case.
The parents still desperately want to take their baby home, to start life as a family but they’re too scared.
They’ve become institutionalised (which happens faster than you might think) and even though their baby is now well enough to go home they can’t see how they could look after their child without all the equipment and support available on the unit.
I’ve had parents ask me who will do their baby’s daily blood tests?
Can they get sterile water for nappy changes on prescription?
Where do they get hospital gloves for people to wear when they want to touch the baby?
Can they not just stay a few more weeks?
They’ve become so used to their child being ill that they can’t imagine what it would be like for them to be well.
Instead of being excited by the news of being able to leave NICU they ask for second and third opinions as to whether their child really is fit for discharge.
They argue with the medical staff.
They panic over every tiny cough and snuffle their baby makes.
They don’t attend discharge appointments with the community team.
When they do eventually go home they frequently ring the unit, sometimes every day at first, sometimes months after they leave. They don’t trust their GP to treat their child’s cold or advise them about chicken pox.
If their baby had been born without any health problems they’d quite happily take them to the GP because they wouldn’t know any different. When any baby is discharged from NICU we send a detailed summary of all the care they’ve received while on the unit. GPs know to be cautious of these children, especially during the winter months and to have a low threshold for referring them to hospital.
Still the parents phone us asking to speak to a neonatal doctor and then get angry when we try to explain as sympathetically as we can that they either need to speak to the GP or go to A&E.
That their baby is no longer a NICU patient and our doctors have neonatal patients to treat.
That it isn’t that we don’t care it’s just that once they’ve been discharged we don’t have any further input into their care unless specifically requested by another medical professional.
They don’t understand.
They expect to always receive the intensity of specialist medical care that they did while they were on the unit. They’ve become used to being able to speak to a consultant within a few hours of asking.
We try to prevent them from becoming institutionalised in the first place but it can be so difficult. The longer they stay the more reliant they become upon the monitors and the staff. I’ve listened to parents tell me that they’ve bought a heart rate monitor on eBay because, even though the doctor says they’re well enough to go home you can never be too careful.
You can be too careful.
You can become so wrapped up in the baby’s previous problems and medical conditions that the parents forget that they have a baby. A little person who needs to be played with and needs to explore the outside world.
Not being attached to second hand medical equipment and only visited by people who have smothered themselves in alcohol gel.
Sadly, some babies leave NICU but their parents can’t. They remember what it was like to have a critically ill child and they’re so afraid of IG happening again.
So they keep the baby at home, refusing to go outside and risk exposing their child to germs. The only people allowed to touch the baby are close family members who’ve scrubbed their hands and disinfected them with alcohol gel.
They don’t go to baby groups or meet up with other Mums or go to the park.
Instead they spend their time looking up symptoms on the internet, phoning their GP and going to A&E. My Mum had a friend who’s little girl spent a few days in NICU because she was a week or two premature. These parents weighed their daughter every day on their bathroom scales and phoned the GP if they thought she’d lost any weight.
They went to A&E several times per week and couldn’t understand when the doctors started to get annoyed with them. They felt they were doing their best for their daughter.
That’s all any parent wants to do for their child.
But sometimes found their best stops the child from interacting and exploring the outside world.
I can’t imagine how much worry and anxiety they must experience every day, just from wanting to keep their child safe.