Commemorative Quilt

I've talked before about the importance of charities that support neonatal or indeed any hospital unit that can offer vital funds that will enhance the unit beyond the NHS budget and be able to prioritise family support, community care, extra staff training to ensure that knowledge is kept cutting edge and small details that seem insignificant, but to families and in-patients make the difference between a scary stay and bit of a fuzzy glow.

Babies should start their growing up at home with their parent(s) and families. However, for 80,000 babies this isn't the case and they will start their lives in a neonatal unit. Wriggles spent two months there, which although is heart breaking, considering how much longer some children spent, is barely skimming the surface. Too many people think that premature birth or sick children is something that happens to other people. Premature birth counts for 7.8% of the number of live births in the UK and up to 40% of those cases have an undetermined cause. In my city, 6,500 babies are born every year, and 600 from those and from other hospitals around the region and the North of England will pass through the neonatal unit, through intensive care, high dependency and special care. Tiny Lives our charity support the unit, including directly funding breastfeeding support posts raising expressing and breastfeeding to 95% and for two specialist physiotherapists who do vital positioning work which is especially necessary for babies in for extended periods of time. They also focus on family support and allow for items outside of the NHS budget to be purchased. 


To celebrate the marvellous work the unit does and the lives of the babies who have passed through since the unit opened in 1993, a quilt is being made by an events group supporting Tiny Lives. There are 93 squares being personalised by parents and a border of buttons are being sponsored by anyone who wants to support the project and from friends, families and businesses.

 So if you would like to get involved or donate, hop over and have a peek. Including Gift Aid, the total raised currently stands at £1009.18 which can be added to the total monies raised so far from the group which is £11,673.89. Hundreds of other people also raise thousands for Tiny Lives across the North East; having had a experience of special care makes an enormous impact on lives from the babies, parents, friends and family.

No parent ever plans to be on Special Care but when you have no choice, having a first class unit, dedicated team and a supporting charity to ease the financial burden, it makes a hard time much easier.

Text QUIL99 £1 (or any amount you like) to 70070 or visit the Just Giving page and we will sew a button on for you 

 

Neonatal Charities

As well as large and vital charities like Bliss among others, many neonatal units up and down the country have their own smaller charity attached that supports both the unit itself paying for medical equipment ontop of the NHS budget to ensure the units remain cutting edge, contributing to research projects, looking after parent and family welfare, paying for extra staff and providing support for the families be they in for a day or 6 months.

My local neonatal unit is at the Royal Victoria Infirmary, Newcastle-upon-Tyne. Ward 35 houses the intensive care, high dependency and special care rooms that make up the unit. It cares for over 600 babies a year born anywhere in the Northern region and at any one time can take 34 babies. It is one of the bigger units in the UK and last year, won the Big Heart (by Mother & Baby magazine and Bliss) award for Neonatal Unit of the Year; not a prize taken lightly when you think of all the fantastic units that save lives every single day. It is by sheer luck that it is my local unit. After university, I applied for jobs liberally and it just so happened my first offer was in my university town of Newcastle so there I stayed in a city suburb, before my daughter came along very prematurely in a matter of a few months. Because of the size of the unit and the specialist Intensive Care it provides, it meant we did not have to be transferred, potentially many, many miles away like many families.

Chocolate Tea Party

Recently I wrote about the tough separation that can occur when your child is ill, for the do something yummy campaign. This feeling of distance sadly shaped a lot of my early motherhood and still looms large in my mind now. It has made me both very grateful and also passionate about the support that families need; that I needed back then.

Being separated from your child is hell; I can't think of a way to dress is up. However, the one thing that can make it easier is kindness. Kindness and a bed as near as possible. And this is where the Sick Children's Trust is a light in the dark. One of the best things that they do is operate "Homes from Home." Around England, they have seven houses attached to major hospitals that help over 3,500 families every year. 

No nurse, doctor or professional is normally any substitute for a parent. A parent’s presence is often worth any amount of analgesia, play distraction, interpreters or therapy. Children’s deterioration is normally spotted first by a parent and their recovery vastly enhanced by their presence.”
John Reid, Director of Nursing and Clinical Operations, Sheffield Children’s NHS Trust

 

When Wriggles was in Intensive Care, I was lucky enough to be allocated a room in Crawford House, a 23-bedroomed house on the grounds of the hospital. As well as a variety of bedrooms, it had a lounge, kitchen, bathrooms and laundry room for families staying a while. All in all, I spent eleven days there: it felt a lifeline. However, knowing that I had a bed behind a private door, less than 5 minutes walk from my daughter and a telephone with a direct line to her bedside was a comfort. in fact, it was sanity saving. I knew from Special Care how sapping it is it return home night after night alone, how hard and expensive it is to go in and out and how home comforts mean nothing without your family. Crawford House kept me sane. It kept me on site so that if anything changed, which it would and very suddenly, I could be there immediately. It enabled me to have no limits to my time on the ward; if I wanted to stay into the early hours I could as it was safe to walk down the corridor, across the car park and into bed. No public transport. No drunks. No taxi fares.

In the kitchen we all had a cupboard so we could cook as well as live off hospital sandwiches and all the utensils and crockery were provided. Bath linen was provided and bedding in the rooms, and hairdryers and shavers could be lent out. In short, it was like a holiday cottage, bar the somber mood in the air. None of us were on holiday, we were all parents of very sick children. Some like me were alone, some in pairs, some had their whole family with them. the range of rooms meant that other children could also stay and there was a special playroom to accommodate this. There is no charge to stay, but it costs £27 per room per night to provide this service. I would not have been able to afford this for my stay, there is no question. I was able to give a donation but it was a far cry from the near £300 I would have otherwise owed.

The houses have an 89% occupancy throughout the year, although in the time I stayed it was oversubscribed with a waiting list. The first night my daughter was in Intensive Care there were no beds but both I was reluctant to return home and the nurses were reluctant to let me, as she was so changeable. They snuck me into a spare cubicle on the paediatric ward we had been on previously under the strict premise that if there were any emergency admissions, I was bound for the all-night Costa Coffee. Thankfully the following day I received a call that a bedroom had become free. During my stay, some families were there throughout, others changed every few days. Some families came for operations, some for emergencies. I would estimate at least half of the families were those of a premature baby in the neonatal unit-were I have been just mere months ago. In fact, their latest project is for a large parent's house attached to a large neonatal unit in Cambridge. 'The Rosie Hospital' will help hundreds of families across the East of England and beyond, as sadly many babies are transferred sometimes hundreds of miles to access the medical care they need, often leaving parents uprooted and faced with a several hour long trip every day or an extensive hotel bill.

Why should you help? Because there are no guarantees: no one ever thinks that will be me. But if you have the misfortune to be 'that one', then you jolly well need support. Not want, need. 

So what can you do to help? Many things! You can donate directly, use their shop or take part in The Big Chocolate Tea Party! Chocolate? Tea Party? Yes, thought you'd like it!

Make chocolate things, sell chocolate things, drink tea and have fun! What better way of raising money for a good cause? As the say goes, every penny counts. Just £25 would buy a brick for a new building project or a mere two cupcakes more would buy a night's stay! So what are you waiting for?? Whip out that apron, wash your best teapot and crack on with it!

Separation

Imagine your child can't be home with you.

Imagine, just imagine. Imagine leaving your child, having to say goodbye and walk out the door. It's hard isn't it? I'm not talking walk out the door to go to work, to have a haircut, to have five minutes peace, but to walk off for the night and not return until the morning leaving a vulnerable child. I don't have to imagine, I know all too well.

Wriggles, my baby daughter is 16 and a half months old, 488 days. Since the day of her birth, I have spent 72 nights apart from her. That is almost 15% of her lifetime, not being there in the dark hours to attend to her every need. 15% forfeiting motherly duties and feeling helpless and guilt that my child may well be scared, being looked after by strangers. Of those dreadful 72 nights, 61 were spent in Neonatal Intensive Care and then Special Care as a neonate, needing to get to the optimum stage of getting home. The last 11 were while she was 6 months old in Paediatric Intensive Care. Between the remaining 85% of night times, we have spent numerous nights in hospital wards. I don't care to specify numbers or days, all I know is that it is quite a lot. Thankfully, those nights I spent sharing her bedside or cubicle in a pull-down bed, a fold out chair or a camp bed. They were tough, yes, but I was just so grateful to be with her I couldn't give a hoot. Because leaving your child at bedtime and not coming back is, well I can't find words for it.

Bizarre.

Heart-breaking.

Wrenching.

Guilt inducing.

Surreal.

Shameful.

They maybe are a few, but they don't even come close to summing up the well of loneliness and emptiness that you carry with you. Never have you feared silence so much, never have you keenly felt the emptiness of your arms.

There is no etiquette either for how to act. When Wriggles was in Special care and not in any immediate danger, there were the conflicting assumptions: 1) that life had to go on and 2) I should be by her side. It is not physically possible to spend every waking minute beside an incubator, for some parents it is not possible to spend every single day. Yet the times you are not there, you are in a daze, a sort of no-mans land. Time is not as you know it. During the SCBU stint, I had one night where I went to the ballet, taken by a friend who thought I needed distraction (she was right, it turned out to be a crucial night for straightening my thoughts. My premature daughter never left my mind throughout the whole performance, and it was this that really hit home just how much everything meant. As the saying goes, you can run but you can't hide) and for four weeks when I went a little potty, returned to work 20 hours a week in the office. That definitely was a mistake. I could barely concentrate at work, I resented being there however much I needed the money knowing that imminent single-parenthood was around the corner and a long stretch of time off work caring for a child on oxygen, and I ran myself ragged trying to simultaneously be at hospital and office and continuously running (literally, I must have looked mad) between the two, which luckily where a fifteen minute walk apart. I also had to collate all baby items that I had not yet bought in that time and rapidly sort out finances and living space. I would stay at the hospital late into the night and would sleep with a increasingly crumpled photograph of my daughter on my pillow. It was no replacement.

Intensive Care was different; her health was an utterly different state of affairs and the experience was far harder. Again, I knew she was in the best hands and separation was a medical necessity but sleeping away from your critical child is not something that is easy. In fact, sleeping may be an overstatement. Can you imagine going to bed without hope? Waking with a hollow dread-alone? A bed had never seemed bigger and night seemed cruel.

We still share a bedroom now, thankfully back in our cosy flat. At first, after the times apart it was a comfort to share a space and know I was not even metres away from her, but could reach out and brush her cot with my fingers. Now she is getting older, I just have not had time or spare hands to move my bed in my own room and give us both some grown up space. I will do very soon, it is time to move on and put some of the past to rest. The bad times are over, and we pulled through, Wriggles triumphant. Now I sleep every night with my snuffler and I love it, whether through the baby-monitor or my own ears.Until she is old enough for sleepovers or I have gone mad with baby-chatter, I will be uneasy unless we are under the same roof each night. It makes me feel safe to know she is nearby. There has been enough separation. 

This is part of the Yummy Mummy campaign for CLIC Sargent, raising awareness for children with cancer. Visit www.yummymummy.org.uk for information and fundraising ideas and search Twitter for #dosomethingyummy. No one ever expects it will be then, but what makes the difference if it is, is knowing that there is help and support available.

Go to Nickie at I Am Typecast to view others and see what she has to say.