Thursday 5 April 2012

No Room at the Inn - the Heartbreak of Neonatal Transfers

A lot of my friends have been affected deeply with their babies being transferred out to other hospitals, often a long way from home. I have asked Leanna from Diary of a Premmy Mum to share her experiences. Thank you Leanna, and your post is very enlightening as much as it is heartbreaking.
When Kylie asked me to write a post about Neonatal transfers, the very first thought that occurred to me was 'Am I actually allowed to rant on somebody elses blog? ' - Because if there's one thing that gets me all hot under the collar you see, it's the state of the Neonatal cot space provision in the U.K today.

Just like Joseph, Smidge weighed a teeny 1lb 7oz at birth and required very specialist care. Now don't get me wrong, I wouldn't change the care she received in those early weeks for all the tea and china, I just wish we didn't have to travel 150 miles, stay in four different hospitals and endure five hospital transfers, that's all.

I will never forget those hours in the ambulance across the ice and snow, just a midwife and me and a very squished up Smidge, who had lost all her waters. One day hubby travelled in the car behind, having thrown a duvet and some clothes on the back seat whilst our oldest son Mr. G was temporarily sent to stay with granny by the sea. We had no idea that we were going to be stuck in this unlikely location for over two months.

Typically Luckilly, One-day hubby didn't forget his lap top, which meant he could work from a distance. And, despite many failed attempts to piggy back the hospital wi-fi system, mobile internet was our salvation and he carried right on developing software in the NICU waiting room, just meters away from a battling baby Smidge- That's the finances taken care of then.

Astonishingly, the company he worked for supported this bizarre set up...but I'm not sure all employers would be quite so understanding.

Seventeen days in to our journey,( after the record breaking snow fall finally subsided,) Mr. G joined us, accompanied by our rather exuberant German shepherd, 'Ruby-dog' and One- day Hubby further extended his role. He became a super dad. Yes, he was a software-developing, nicu visiting, home educating, dog walking, some-day wife proper-upper, paying out expenses on two different properties, a financial predicament we are still recovering from to this day.

But as we settled in to our temporary house, Smidge decided it was time to remind everyone that she was in fact a preemie and like most preemies she was somewhat unimpressed with the make- shift womb. A speedy deterioration followed the diagnosis of NEC and she was promptly wheeled into the back of an ambulance for an emergency transfer to a surgical unit.

It was a very low point for One-day hubby and I. Neither of us wanted to leave her side, but poor old Mr. G was beyond bored and despite our attempts to occupy him with numerous new nintendo games,no amount of gadgetry was going to make up for his missing friends and family who were hours and hours away from us.

The surgical hospital was busy. The atmosphere resembled that of Paddington Station. No time for tea and sympathy, Two in, one out...there were lives to save and parents just had to get on with it. The bold primary colour theme was a far cry from the cool shades of blue and lavender at the level three unit, which in contrast seemed like a tranquility of oasis.

Smidge must have heard the surgeons plotting, as she swiftly made a recovery with the help of ye old favourites, the much loved red bag (drip feed) and the bootiful antibiotics.

We'd been trying to get her to tolerate milk for two months by this point, but each time we tried her with the freshly squeezed boobie juice, she would abruptly reject it in favour of the former. I guess she just loved that drip feed more than anything else.

On the plus side at least the surgical hospital would be able to get her feeding properly established, then if anything goes wrong... she'll be in the best place, right?

Wrong. Her bed space was already lined up for another sick baby, and a still unwell and food intolerant Smidge was sent right back to where she came from, the 'assesment' incomplete.

Back at the level three unit, the doctors ummed and ahhed and poked and prodded and a week later they came to me with the 'good news' that Smidge could be transferred to a unit closer to home.

'But feeding has not yet been fully established' came a small voice from me, the parent.

'We know but, we have to make room for our local Mums or, in a sense we will end up putting them in the same position you have been put in. As far as we are concerned she is well enough to travel today'

And as we said goodbye to the unit who bought Smidge so far, I left with mixed feelings. Grattitude, rejection, fear and anxiety. How I wished I was was not taking an intensive care patient 150 miles in the back of an ambulance because once again, there was no room in the inn.

She lasted about a week at the level 2 unit, before green bile and recurrent apnoea prompted yet another surgical transfer. With the duvet's piled high in the back of the car, Once again we set off on what was this time an 80 mile trip to the latest world of monitors, charts and bleeps, the only source of continuity being a singular pre packed suitcase.

It was hospital number four and I was stressed. Actually that's an understatement, I was steaming! wanted to be in my own house, I wanted to sleep in my own bed. I missed taking my son on the ordinarily tedious school run, I missed shopping at my local supermarket and washing up at my own kitchen sink.

I'd also lost faith in the doctors and nurses. I'd given up on trying to have any control over the process.Here we were three months down the line, still with a very sick baby and it all just seemed a bit yadder, yadder, yadder.....

Thank goodness for my i-pod which assisted me in excluding any social stimulus that existed outside of me touching or holding my baby. Everyone else could jolly well consider themselves sent to Coventry, I'd had enough.

As with many things in the Neonatal world, I experienced service provision as being paradoxical in nature. On the one hand it was utterly amazing that the national health service would save the life of a baby born so small, but equally I see that my child suffered needlessly at the mercy of the hospital transfer system, so the gratitude I feel will be laced with anger and with a drive to see things change.

We know these very small babies require specialist care, we know the problems they will likely encounter, but until they are allocated the resources they deserve, vulnerable babies lives will continue to be put at risk through the hospital transfer system.

So,If you're like me and you think early gestation babies deserve the best care they can get, speak to your M.P today about securing resources for Neonates.

Because no baby should be made to suffer because they were born too small.

Rant over.

1 comment:

  1. Samantha Wallace5 April 2012 at 08:49

    Oh my God,I am holding back my tears on the bus. Gemma was also 1lb 7 and got NEC but we were so lucky that the surgical team were at the children's hospital,a 15 minute drive away and they came and assessed her in nicu. She then had a day trip there and back for the surgeries and procedures she needed. Eventually she stayed there for 5 months after 3 months in nicu which was a long time but at least we were close to home. I can't imagine how that felt especially with another child.

    When we visited the nicu 2 days before gemma was born they said they had an incubator for us but couldn't guarantee it would still be there when we needed it! We could have been in newcastle,Glasgow or Aberdeen when home is Edinburgh. Having friends and family on hand to cook,shop etc is invaluable and couldn't be possible if we were away from home.

    What a great post x