Thursday, 17 November 2011

World Prematurity Awareness Day: Life on SCBU...And Beyond

If you've been reading my blog for a few years now, you'll know that Littlest was born at 28 weeks.

That's pretty early- its only babies born after 22 weeks who Doctors will actually try and help. Which is shocking, as there have been a few now who have been born at that gestation and have survived, and in my opinion it should be up to the parent, but that's another post for another time so I wont get into that.

Today, its Worldwide Prematurity Awareness Day, and I felt compelled to write about life with a Preemie and beyond.

Nothing prepares you for the moment you're told that there is no way you'll reach full term in a pregnancy. When a Doctor you've know for five minutes pops in, and does that signing, sympathetic talk, sat on the edge of your hospital bed, tells you that they will aim for 35 weeks. 

My water part broke on a Sunday night, and all that night I lay in bed, more scared than I have ever felt before. It was a bank holiday Monday the next day, so my sister in law drove me over to the hospital, and they confirmed that I was not going anywhere. 

All in all, with time going back and forth to see Littlest, I was forced to visit my dreaded hospital (I hate them. Really, the smell, the hurry, the hush, I really hate them. They're hardly the most jolly of places after all) for over 4 months.

An Incubator costs £25,000 new, and nearly as much to fix. It was a dark, hot place, full of electronic noise, hushed conversations, and occasionally the noise of a baby crying quietly. Its a strange place, everyone should be happy as there are lots of newborns everywhere, but apart from the "Same boat" smiles, its a subdued environment.

We rarely took our hyperactive toddler Mini with us to SCBU. The family room was tiny, with a small kitchenette , and a barely working TV DVD player shoved in a corner. There were a few broken toys, but not much else, and six chairs, the school kind so not designed for comfort, 3 each side of the room. Not the right place to introduce a baffled child to her brother.

In another, even smaller room, was what became known as the Boobie Room- strictly off limits to any Dads on the ward, it contained 3 electronic breast pumps. Although at first SCBU babies are fed through tubes, as they are too small to know how to suck, if you can feed them breast milk its the best thing for them. In cruel irony, most can't express as the body hasn't kicked in to lactate yet. Second step on the road to feeling like a gigantic failure. Again, these machines cost thousands, and at our SCBU there was generally only 1 working. Have you ever sat next to a woman, with your boob being violently sucked by a machine, as hers is treated to the same, and tried to think of a normal conversation to hold while this goes on? The weather was a good choice.
To my mind, prematurity should be taught in school. We're taught how a baby is conceived, how it grows, how it is born if full term. My only knowledge of prematurity was what I'd seen on TV. The stark reality is far removed from what is shown on TV.

When Littlest was born, at around the same time, Eastenders carried a prematurity story, as Roxy Mitchell had her daughter at 28 weeks too. Whilst Littlest stayed in SCBU for 4 months, and remains with varying degrees of health issues to this day, Roxy's child stayed in the imagined SCBU for a mere two weeks, and in a storyline so far from truth it made me laugh and cry in equal measures, left the hospital a healthy looking child with no problems whatsoever. There was no neurotic Mum wrapping her up warmer than any child needs to be, then worrying so much that they stay home instead. No oxygen at night, no drugs, no daily Nurse visits. I recall one young Mum asking one of the SCBU nurses why her child was still in hospital but Roxy off the tellies wasn't ill at all. To my mind, if a TV show wishes to carry a storyline, it should be told properly, else wise it gives false hope.

Christmas came and Littlest came home. It was a lovely day, leaving, and jokes were made that whilst we like you all we really hope we don't see you again soon. Even on leaving, there is always the fear that something could happen and you end up back on the ward.

Bringing home a preemie is joyous. But it's also full of fear, worry and anxiety of what may happen, what could go wrong.
It was cold when we brought Littlest home, and snowed us in for many weeks over that winter. I recall heating being on, sitting in a t-shirt as I was so warm, but still thinking that maybe I needed to check Littlest's temperature just once more. Perhaps we should stay home instead of all going out as a family. I began to lose my mind, with worry and upset and depression kicked in. I would go to bed, but I would lay there watching Littlest sleep, sure that if I fell asleep, then he would get ill. 

Prematurity is something which changes a whole family- Littlest still suffers illness, and has been in and out of ambulances during the last few months. It terrifies me as a Mum that I send him to playschool, but I have to let him go. I have to let him enjoy himself and behave like a normal child. Whereas Mini gets a cold and I reach for the calpol and a hug, with Littlest it drives me into panic mode.

Its now thought Littlest has an illness similar to Cystic Fibrosis, he has a patch which doesn't work properly and remove germs from the lungs in the normal way. There is no cure, its just how its managed.

To look at, most of the time Littlest is a cheeky, funny 3 year old, obsessed by cars. He is quite clever, and smiley, and not at all as miserable as he could have been in his circumstances. When he is ill, he can barely move his head off the floor. He gets hot and tired out easily. He cannot walk to school, or to town or he gets out of breath. He is on and off steroids. Its an on going part of his life, of his day to day. 

Prematurity is scary, sad, a nightmare. It is filled with funny moments of friendship where you try and find something to joke about in SCBU (we used to treat the babies in our ward as Big Brother housemates- one of the Dads was great at the voice over!). 

Its something we need to be aware of. 

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1 comment:

  1. Thank you so much for sharing your emotional story. I didn't see that story line, and I am very glad I didn't. They covered it on Emmerdale as well and it was equally annoying and inaccurate.

    CLD is little known and misunderstood thank you for raising awareness.


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