Lucky Beggar

My French, which was never much above borrowing-the-pen-of-the-gardener’s-aunt standard, has dwindled significantly during the 19 years that have passed since I last sat a French exam. I can, however, still remember how to blurt out the single, solitary phrase that I ever used in genuine French situ: a tearful foreign-exchange 11yr old on her first time away from home, stuck in the beautiful yet oh-so-isolated St-Aubin-Chateau-Neuf, realising that she probably wasn’t going to make it through dinner with her kind, yet very much non English-speaking host family, without grizzling miserably.

“Je suis très fatigué!”

And I am. I’m done in. I uncharacteristically fell asleep on a sofa yesterday evening, while Harry, puzzled by my non-combative status (‘Marmee! Marrrrrmee?’ is his latest pronunciation. I have been having Little Women thoughts all week) busily fed plastic coins down my cleavage while I dozed. I had odd dreams.

Yesterday, I held my annual coffee & cake morning for Bliss, the Premature Baby Charity. I wrote, last year, in a reasonable bitterness of spirit, a little about why I do this. Several people have asked me: why not just write a cheque? I could do that, I suppose, because I work in sales for a living and selling cake to family & friends in my spare time is definitely something I could happily Not Do, as it happens, but for some inexplicable reason I feel like I have to suffer a little.

John, who is my chief appointed tidy-upperer at Hairy Towers for this occasion, would very much like to suffer a good deal less, and would delightedly buy himself out with a cheque. Procrastination, thy name is Husband; he managed to convince himself that the vacumning, junk-clearance, toy-boxing, coat/shoe-tidying, floor mopping and trailer-park-trash-removal was able to wait and industriously set-to with a hoe to weed the patio, before disappearing A) to the recycling centre (with the old dishwasher that’s been sat outside for 6 months) and B) to drink coffee at his mate’s house. He was inordinately cheered when my mother, like the hero she is, risked life-long asthma and tidied the dog room for him. He would really, really prefer that I wrote a cheque.

But writing a cheque would deprive me of the opportunity to rant. I get very ranty indeed about the topic of neonatal critical care in the UK. 20,000 babies a year need Intensive Care in this country. Not just Special bit-prem-bit-scrawny-can’t-maintain-own-temperature-or-suck/swallow/breathe-properly-yet Care – although God knows that’s plenty, plenty horrible enough. Intensive Care. Please-Don’t-Die Care. I-Will-Hear-These-Sounds-And-See-These-Sights-All-My-Life Care.

Which is often extremely tough luck for the 20,000 babies, on a number of counts, because finding a local Level 3 NICU cot is like trying to find a taxi at 1am, New Year’s Day. It’s luck, you see. Not standardised provision. There’s plenty of cars in the world, yes, but… a taxi? Vacant? Near you? Manned by a licensed, alert driver? Good luck with that.

We were lucky with Harry. God, we were lucky. We had the last bed in our local, brand new-equipped NICU, 10 miles away. It took several hours to stabilise him enough to transfer him onto the ambulance ventilator and actually get him there, during which time we were stuck at the wrong hospital with no mobile phone signal and we were bowel-meltingly terrified (there really ought to be better synonyms for scared) he might have died, and his first few days were filled with atypical, unusual seizures, massive desaturations, hole in heart with grade 4 murmur, suspected brain damage, suspected necrotising enterocolitis, suspected infection, second-line antibiotics and a spinal tap, but… yeah. Lucky.

I can relate the whole sorry tale, and I tell you, I still feel really, really fucking fortunate. 

The parents of the baby in the cot next to Harry? Weren’t lucky.

We can’t save them all. I know that. But we can save more than we currently do in this bloody country: people are often surprised when I tell ‘em about the UK’s infant mortality stats. Trailing in, 24th in the European Union, level with Croatia, is… awful. I’m not knocking Croatia: the UK undeniably has advantages that they do not, and WHATTHEBUGGERYFUCK, UK?

Sigh. This is the buggery-fuck: there’s just not enough staff. There’s a chronic, chronic shortage of neonatal specialists, ergo the available cots are under hellish pressure, and patient care is, inevitably, sometime compromised, because the service has been stretched to its limits, almost since inception. An adult admitted to ITU can generally expect one-to-one nursing care. Despite the wearisome year-in, year-out, same-old recommendations for improvement, a neonate often cannot (although their medical needs are, arguably, greater than an adult’s) because there simply. Are. Not. Enough. Staff.

Harry’s NICU cot was next to the ward desk, and I could hear, over the cacophony of beeps and alarms, the sister on the phone, trying to fill shifts. Asking tired nurses to come in on their days off. And, although I deeply appreciated, even at the time, how these men and women needed their down-time to recharge and relax, I couldn’t help being acutely aware that it might be Harry’s night nurse shift she was trying to fill. I was the epitome of Conflicted.

I can’t think of a higher-pressure job in medicine than neonatal and paediatric intensive care. Your patients are, without exception, adorable. They have everything, everything to live for. When you lose a patient on these wards, it’s not an easy, quiet death. Not a gentle death; the closing of a fulfilled life, with children and grandchildren stood ready to mourn, to grieve, and, eventually, to accept and to smile at their memories. These medical staff must, daily, stand ready to face that most unnatural facet of human existence: the death of a child.

When they unhooked the baby next to Harry from the ventilator, and wheeled the incubator out of the ward, I saw the face of the nurse who was bagging the child – mainly because her face was an easier one to look at than the parents’ – and the tears were pouring down her cheeks like rain.

I want that nurse to be able to take her days off, and not feel guilty.

I want that nurse to be properly supported and trained in her important, specialist role.

I want that nurse, who put her arm tightly around me when I cried over my desperately-poorly son, not to burn out under the stress of her job and working hours, and leave the role to others with less empathy. (Of which others, I have to say, I found a few too many. These tiny neonates are beggars, and cannot, sadly, be choosers.)

I want every baby to be born healthy, but I’ll settle, pro tem, for every baby getting the best quality care this country can give – without having to be unnecessarily and dangerously transported hundreds of miles to find it.

I would love a donation, no matter how small, but I would also like to direct the flinty gaze (or stony. Stony is also good.) of UK readers at the Secretary of State for Health, Andrew Lansley, MP. A draft letter to the bloke can be found on this page. Your MP, who should be exhorted/pleaded with/blackmailed (please delete as applicable) to approach Andrew Lansley on the topic, can be found here.  

A most sincere thank-you to those of you that came along yesterday. I know some of you read – indeed, some of you blog! – and I really do appreciate your kindness to us. To Harry. To me. I liberated you of £227 and I am delighted with my shakedown!

I was humbled beyond belief last year when so many of you, whom I have mostly never met, donated online. I was completely mentally tripped-up by the notion that my odd little corner of the internet could have generated so very much unforeseen good will, generosity of spirit, and sheer human kindness. Many of you found me here because you do not – yet – have children, and yet you gave your money to Bliss – a charity that helped us, Harry, and his medical team -  because it was a cause dear to my heart, not yours. 

I cried. I cried for days.

I do not take your support for granted, and I know – don’t I just! – that times are hard, and the wolves are likely snapping as closely at your fiscal sledge as they are at ours. But if you are able to hurl off an undeserving peasant give (from each according to his ability, from each according to his need, type-of-thing) then I would be… well. I think the word is verklempt.

There is a minimum donation set by the Just Giving website of £2 (approximates to USD$3.33 / AUD $3.20 / €2.3 / 0.00232344 gold ounces) and if that’s what you’re comfortable sparing, then please, believe me honestly, truly grateful, and more than grateful.

http://www.justgiving.com/DarthToddler

I am jollying the donation process up a little: I have bought two very friendly young Bliss teddy bears – everyone needs a teddy, or knows someone who does -

to give away, and shall do so with the help of random.org, among everyone who donates and leaves me an email address to contact you with. I’ll post them anywhere in the world: I don’t care if you’re Santa’s little helper or an Antarctic scientist. 

And… if you’re still with me all the way down here… thanks for reading, peeps.

Ann xxx

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19 Responses

  1. You got it, baby. Stay tuned.

    I love the second picture of Harry, with his eyes open. He looks like himself already–a strange thing for someone who has never met either of you to say, I realize, but I recognized him immediately as himself.

    Thank you for baking, and for posting, and for coordinating. And for prevailing. You’re lovely.

  2. I am sat in tears. What a moving post. Maxi was four months when he went into ITU and we were fortunate when other parents wernt. I will donate I dont have a lot to give, bt every penny helps. My cousin was 1lb 2oz when born and Princess Di visited him in hospital. He is a strapping lad of 24 now.

  3. Oh, that story about the baby next to Harry. I can’t even imagine. I just can’t. Yet I know it’s something that happens all too often.

    The first picture of Harry is hard for me to look at, but wonderful because now here he is, boisterous and TALKING little boy that he is. I love the second photo because his face is so recognizable even as that tiny little infant.

  4. [...] I had no idea that these services were under such pressure. I just did not know that parents couldn’t rely on the care to just be there. That they may have to travel long, and dangerous, distances to get it. (Thanks to @hairyfarmer for the linkies. She has more information over at her place). [...]

  5. You are an amazing lady! The coffee and cake morning sounds like a fabulous idea for raising money for Bliss, what a brilliant and inspiring thing to do. Harry is gorgeous!
    I had 2 premmies,now 3 and 1, between the two of them we were in hospitals for 6 whole months, I am an exceptionally lucky lady. Thanks for sharing your story and all the facts, I knew they were vastly understaffed but to see it in numbers is terrifying.
    Good luck with reaching your target,
    Jo xx

  6. Well done, Wifey. You’re a superstar.

  7. Made the mistake of reading this during my tea-break at work, and was found weeping helplessly by a colleague (who I then harangued for a donation to Bliss. Fingers crossed, eh? Also, I’m all class).

    Of all specialties to understaff, that this should be understaffed, puts me in a raging crimson funk. Must go and type out, delete, type out, delete, edit, reconfigure, and finally sanitise a couple of MP and Health Secretary directed rants.

  8. Oh how I wish I could harass the secretary for you…

  9. I don’t suppose the secretary would pay much attention to a letter from an annoyed lady in Chicago. So I’ll donate instead.

  10. I’m sitting here in tears. But then I never could go onto the neonatal ICU wards without bursting into tears. The one time I helped my boss do a tracheostomy on one of the little prem babies, I sniffled behind my mask the whole way through.
    I am so pleased that Harry was lucky. I am so angry and upset that so many are not.

  11. Do you mind if I send some like-minded friends the link to this?

  12. Donation made… letter to write!
    I hope that you manage to reach your target… I hope that a difference can be made.

  13. [...] 2010 to commence, I shall ask, nay, plead, that you all go over to the Hairy Farmer Family blog and read this post, about the first few weeks of the life of her premature son. Take many hankies and possibly a stiff [...]

  14. I was totally stunned to read your country’s shameful rank within the European Union. A first world country, supposedly, that ranks with a country still struggling to recover from the effects of totalitarianism and war. WTBF UK? indeed!! Pick up your game!!

    Have donated. Would send a trailer load of kangaroo droppings to the relevant Minister if I thought it would help but if Politicians, UK varietus useless are anything like Politicians, Australian varietus crappus, it will be a somewhat pointless exercise. Although I do feel better after penning abusive rants even if I never hit send.

    Love to all at Hairy Towers.

  15. Hi there. I have just read your post via a friend’s link on facebook and found it so moving, I have just cried buckets! As the lucky parent of two full term, healthy babies, I had no idea that this service was so understaffed. My father was in ITU before he died and I remember the days and nights spent at the hospital but he was lucky to have his own dedicated nurse to tend to his needs (and ours). I have no idea what could possibly be the rationale for not having the same level of care for newborns. Thank you for raising the plight of these babies and keep up the good work. I am busy donating now. good luck, Kate x

  16. My sister’s best friend is a paeds intensive care sister and I have heard first hand of staffing difficulties which often arise because it takes years of training to be worth having on the ward so there aren’t the staff out there on the shelf to hire and burn out rates are unsurprisingly high. The dedication of the ones who stick around is second to none.

    The proposed NHS “reforms” in this area are only going to make matters worse. Andrew Lansley will be getting a green ink letter from me.

    ( As an aside whilst the stats are truly dreadful (and are even worse if you drill down by deprivation level) we do still do better than the US but faint comfort as parents listen to staff desperately trying to find a level 3 bed.)

  17. [...] primary reason for so doing, is, as I have written before, an expiation of what I obscurely feel to be my indebtedness. Payment for that very small sun [...]

  18. [...] 2010, I inexplicably appeared to take no photos, but I’m pretty sure that I made cakes, kind [...]

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