Tag Archives: RSV

When Premmies Get Poorly

It’s never fun when your little one is poorly. Sissyboo was never a sick child. She got a bunch of the childhood usuals – chickenpox, tonsillitis – but not that badly. OK, she usually managed to get seriously ill out of hours – why do kids always do this? – forcing us to rely on overstretched A and E services or an out-of-hours GP it takes ages to see before he or she sends you to A and E, but mostly she and we got off lightly.

I’m repressing the time she got croup and nearly stopped breathing. That was terrifying. But even then one emergency steroid shot and she was running round A and E in a vest and nappy and singing nursery rhymes to random strangers. Mostly, Sissyboo’s illness involved lack of sleep, emergency work/childcare arrangements, cuddles on the sofa and books and films. It was never convenient, but ultimately bearable and the sofa time with her even felt like a bit of a luxury sometimes.

Of course, that didn’t stop me worrying about her. But my sense of what constitutes worry now has been totally recalibrated. Who knew there was a whole other level of panic to experience? Not me. Not until prematurity and disability entered our lives.

I’d never diminish the worries of parents who don’t have medically vulnerable children. Up until two years ago I was one of those parents and I got anxious and stressed by all manner of things. The same things wouldn’t worry me in the same way now, but my worries then were no less valid than those I harbour now. But everything’s different when your child has been through so much. When every setback has so much potential significance.

You see, when premmies get poorly you don’t just have to treat the illness. You have to deal with all that came before it. A cold isn’t a cold if you’ve been on a ventilator for a while. Old scars wake up, newly agitated. As I write this at 2 in the morning, I am cuddling a wheezing Boo who has a probably mild virus but one that has agitated the damaged lining of his lungs just enough to sound like he has had an 60 a day smoking habit for 50 years. A mild virus means steroids and two inhalers and a medicine schedule so full and complex I’ve had to draw up a chart.

And it’s not just the real scars that come back to life when premmies get poorly. It’s those pesky metaphorical ones too. The hurt you feel as you helplessly watch your baby fight to survive, thrive and get home. The pain that accompanies the fear that these things might not happen. The memories of hospitals, treatments, their side effects and unhappy conversations. The anxiety that hard won progress will be lost. I had planned to write a blog post about Boo’s latest developmental spurt this week. Instead, I am sat on a cold floor trying to get him to sleep and wondering if we will get away without a hospital trip this illness and counting down the minutes until I can give him the next ten puffs from an inhaler. I hope I can still write that post next week, but I don’t know how far this will have set him back.

In short, when premmies get poorly you are reminded of how vulnerable your children and you are. You are reminded of how far you’ve come and how far you have to go.

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RSV and the Silly Season

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It’s the silly season: Halloween, bonfire night and Christmas are all upon us. And with that comes about 1000 requests a day (more or less) from Sissyboo’s school for gifts, cakes, volunteering, costumes and … oh I can’t finish the sentence because I feel queasy now.

It’s also cold and flu season. More to the point for former premmies and medically compromised kids like Boo, it’s RSV season. Until March next year. That’s right people. Until March.

RSV… I’ve said before that after having Boo I entered by own private hell of acronyms. In the NICU (acronym #1) I had to learn about the dangers of NEC and CLD, the problems that can attend NG feeding and the TPN that can help to alleviate them. Then we experienced the horrors of IVHs and the CP and IS they led to.

When we finally got Boo home, though, the one acronym I’d been told particularly to fear was RSV (CP and IS were just beyond the horizon in those halcyon days). I cannot tell you why I hadn’t heard of RSV before. I’d  probably had it, after all, as had my partner, daughter and most people I know. That includes you. You’ve most likely had it. But have you heard of it?

No? Well you should have. I should have. Because these three little letters can cause a whole lot of trouble for premmies and anyone with suppressed immunity or underlying health problems such as asthma. In most people like you or me when we get RSV we just feel a bit rough for a week, take a painkiller of choice, drink tea and carry on as normal.

For kids like Boo it can cause a raft of other illnesses and frequently leads to hospitalisation, breathing difficulties (sometimes very severe) and, in some cases, necessitates ventilation. It can produce a heap of complications such as pneumonia or long term lung problems such as the bronchial hyper-reactivity Boo now has.

In the US, many preemies, especially those born extremely early (or micropreemies) are put on RSV lockdown or isolation. Trips out of the house are only allowed to certain locations and have to be planned with great care. There are many preemie parent bloggers who have great advice on dealing with an ordeal I only have had a glimpse of during the months Boo was on steroids. I nearly went mad. There is no equivalent recommendation in the UK to the lockdown encouraged in the US beyond being cautious during RSV season. How very British…

But that’s why we all need to know about RSV. Because we need to help those whose bodies can’t fight it by behaving responsibly when we might have it and not even know it.

RSV stands for Respiratory Syncytial Virus. If you are otherwise healthy and you get it you will likely think you have a bad cold or mild flu. You will have a runny or stuffy nose, a headache, a sore throat and a cough, maybe with a fever. You likely won’t need GP treatment and if you do go to the GP they probably won’t test for RSV (the test is done via a nasal swab) as it should clear up of its own accord and being a virus it doesn’t respond to antibiotics.

But, and this is an important but, RSV is highly contagious through cough splutters and sneezes. It lingers on hands, clothes and door handles or pretty much anything you touch with unwashed digits. And that means you could unwittingly pass on something that makes you feel a bit out of sorts to someone for whom it could be utterly devastating.

When we left the NICU last year, I left with the fabulously useful pack provided by the wonderful charity Bliss, which helps babies born sick or too soon. One of the leaflets in the pack was about common winter illnesses. It contained helpful advice on RSV diagnosis and prevention and you can download it here.

I found out subsequently that in the US you can get an RSV immunisation and I asked Boo’s most unhelpful consultant if there was any equivalent here. He told me no and it was likely an ineffective vaccine anyway, although to be on the safe side, Boo should have a flu shot. By the way, the flu shot does not prevent RSV at all. Have I used the word unhelpful in this paragraph yet? Let’s try useless this time. He was/is useless.

In any case, I quickly realised that prevention was clearly going to be the best form of cure as far as this little viral blighter was concerned and it was not necessarily going to be easy given that Boo’s big sister was at a large nursery.

Yet the answer to the question of how could we help prevent Boo catching RSV was so simple that even my then 4-year-old could understand it. I won’t put it in capital letters in case it looks as though I am shouting (although I would stand in the high street with a tannoy if that would help): Wash. Your. Hands.

We made every visitor who came to the house wash their hands. We had antibacterial hand gel (not as effective as hand washing but more acceptable to some, it seems) by the front door and used it liberally ourselves in between hand washings after touching our faces and before touching Boo. We stayed away from him when we had colds and I washed door handles etc. when I remembered to do so (I wasn’t obsessive about this, no matter how this post makes me sound, but I was diligent).

Some people (usually medical folks coming to the house I must say) bristled a bit when I suggested they might wash their hands (especially the health visitor, who came in with a stinking cold, sneezed into said hands and went to touch Boo’s arm) but most were fine about it.

And then Boo got infantile spasms. He went onto a brutal but effective course of high-dose steroids to stop the devastating seizures and needed daily monitoring for blood pressure and blood sugar rises resulting from the medication. The NHS guidelines were that these checks should be done at home by a community or epilepsy nurse as Boo’s immune system was so suppressed by the steroids that taking him into a germ factory, I mean hospital, was not a good idea.

But our hospital has no epilepsy nurses and the consultant who usually manages these protocols was on holiday and the person in charge demanded we make daily trips there … With a baby having multiple seizures a day…. And each day for 5 days (I am not kidding) we ended up in the Children’s Assessment Unit sat next to a child with bronchiolitis (a common side-effect of RSV) or RSV itself.

So guess what? Boo got RSV and bronchiolitis. And he was hospitalised for a terrible wheeze and we were put in isolation. Unless a nurse could be found to help me and they were so busy they rarely could, I couldn’t go to the loo or get a drink as I wasn’t allowed to take him out of our cell, I mean room. He avoided re-ventilation but only narrowly. It was horrible. And so unnecessary. The spasms were enough to contend with. Believe me.

And we still live with the after-effects of RSV. Boo has bronchial hyper-reactivity, which means that the infection scarred his lungs badly and even the most minor sniffle can make him sound like he has had a 60 a day cigarette habit for 50 years. It disturbs his sleep and his feeding. He should grow out of it in time. And we were lucky it wasn’t worse.

But it still makes me angry that he got it from a hospital whose cross-infection procedures are, in the words of one of the specialists who treated Boo on the ward, ‘laughable’. Boo left that NICU with a host of problems related to his early arrival and meningitis, but respiratory problems were not among them. Not until we were forced back to the bloomin hospital.

It also makes me angry that people can be so complacent about hand washing. It’s so easy. Why is it so irritating to people?

The other day, I dropped Boo off at nursery and used the hand santizer on the entrance door (as I always do and everyone is asked to do) when a Dad behind me and clearly in a rush (aren’t we all?) said ‘Oh you’re a rule follower are you? Can I get by please?’ Because you know, that 15 seconds I spent washing my hands in the hopes any bugs I might have might not get passed on to his little bundle of preciousness was clearly a sign of sheep-like acquiescence and I was wasting his time, goddammit.

I didn’t say anything, but I did ask nursery to send out a reminder to parents to wash their hands on entering the door. I know it’s a losing battle, and I don’t wish to sound preachy. But here’s the deal: I didn’t know about RSV before having Mr Boo. Now I do. And I have seen my son and others really badly affected by it. So I feel I need to tell others what I now know so that they can help make a difference.

Hand washing is childishly simple. It’s not time consuming and it’s just about one of the most proactive and socially responsible things you can do.

This may be the silly season, but please don’t be daft. If you have a cold (it might be RSV, you will likely never know) please wash your hands regularly. Boo and I will be very grateful.

For more information on RSV, please consult the Bliss website.