Little bliss issue 29 (Spring 2013)

Littlebliss

Issue 29 Spring 2013

The only magazine for families of special care babies www.bliss.org.uk/littlebliss

Say what?

The thoughtless things that people say

Going the extra mile How running a marathon compares to life on a neonatal unit

AND MORE: CAKE A DIFFERENCE l DADS TALK l LOOK AT THEM NOW l ST MARY'S HOSPITAL, MANCHESTER l EXPERT ADVICE ON BACK TO SLEEP l NEWS FROM BLISS l KIDS STUFF – EASTER ACTIVITIES

HELP & EXPERT ADVICE FROM SPECIALIST BRA FITTING TO E N S U R E YO U R B R A G I V E S A L L T H E S U P P O R T Y O U N E E D, T O F I T T I N G YO U R C A R S E AT

2 Y E A R G UA R A N T E E W E ’ R E A L L A B O U T P E AC E O F M I N D. M OT H E R C A R E 2 Y E A R G UA R A N T E E ON ALL PUSHCHAIRS, STROLLERS A N D C A R S E AT S

P R I C E M AT C H W E W O N ’ T B E B E AT E N O N P R I C E I F YO U F I N D T H E S A M E P R O D U C T AT A CHEAPER PRICE ELSEWHERE, W E ’ L L M AT C H I T

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Going the extra mile

Registered charity no. 1002973 Scottish registered charity SC040878 Cover image courtesy of Jess Milton

M

arathon season is upon us – the time when thousands of people across the country don their running trainers and charity vests and drag themselves around a 26.2 mile course to raise money for a worthy cause.

In keeping with this theme, we’ve gone the extra mile to bring you some heart-warming and inspirational real life stories.

On pages 22-25, Claire Nevill speaks to three parents of special care babies who are each running a marathon for Bliss. Drawing comparisons between their experiences on the unit and their training regimes, they serve as an inspiration to anyone thinking about taking up running for the first time.

In Say what? (p10-13) we speak to parents who’ve had to put up with thoughtless comments about their babies from other people. On p18, we also get a grandparent’s perspective on what it was like when his granddaughter was born at just 23 weeks.

Speaking of going the extra mile, we visit St Mary’s in Manchester - in our very last Welcome to… (p16-17) – and see how the neonatal staff there are going above and beyond to support families on their unit.

At the risk of abusing my position and shamelessly plugging myself, I’d like to add a final note that I too will be going the extra mile for Bliss in April as I attempt to run three marathons in three weeks (Paris-BrightonLondon). If you’d like to sponsor me you can find my JustGiving page at www.justgiving.com/MarkGorman2013 Mark Gorman, Editor Editor: Mark Gorman Design: Jess Milton Little bliss 9 Holyrood Street London SE1 2EL t 020 7378 1122 e little@bliss.org.uk www.bliss.org.uk

In this issue...

Regulars 4 News from Bliss

Cake A Difference and Big Heart Awards

16 Welcome to…

Saint Mary’s, Manchester

21 Ask an expert Back to sleep

30 Volunteers Celebrating our amazing volunteers

32 Kids stuff Colouring competition, Easter activity and maze

Features 10 Say what?

The thoughtless things people to say parents of special care babies

22 Going the extra mile How running a marathon compares to life on a neonatal unit

28 Ode to hope Poetry from a mum and a surviving premmie

Real life 18 A grandparent’s view Having a baby in special care doesn’t just affect parents

26 Look at them now Emma Cox

Bliss does not endorse any companies mentioned in this magazine and takes no responsibility for any action taken as a result of anyone reading this information. © Bliss 2013. No part of this publication may be reproduced without prior permission from Bliss.

About Bliss Bliss ensures that more babies in the UK survive and have the best quality of life by: • supporting parents and families • campaigning for improvements in neonatal care • promoting developments in care.

Little bliss l Spring 2013 3

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In this issue News

The Big Heart Awards The annual Mother & Baby Big Heart Awards took place on Friday 18 January at the Park Lane Hilton in London.

The ceremony celebrated people who have made a real difference to the lives of anyone who has experienced difficulties surrounding pregnancy and birth – and three of the awards were given to people or groups who’d worked closely with Bliss.

The Bliss Volunteer of the Year award went to supporter Cassana Rason whose three children were all born premature and who became a Bliss Champion in 2011 to provide support to families in

her community. Last year she wrote and recorded Tiny Hands, a single being launched this year to raise funds for Bliss.

The Neonatal Team of the Year, sponsored by Abbvie, was awarded to Edinburgh Royal Infirmary. They were nominated by Sandi Wilkie, whose daughter was in their care after being born at 27 weeks. The staff helped Sandi endlessly throughout that difficult time. Their award was collected by Dr Ian Laing.

Family Group of the Year was awarded to the Forth Valley Bliss Family Group from Stirling, Scotland. Gayle Paris and Sarah Matheson from the group accepted

the award after being nominated because of the tireless work they do helping local families who have had a baby admitted to neonatal care.

Other awards included: Mum in a Million sponsored by Angelcare, Family of the year sponsored by Mothercare, Brilliant Big Sister sponsored by Diono, Against All Odds Baby sponsored by iCandy, Fantastic Father sponsored by Tomy, Healthcare Professional of the Year sponsored by Cuticura and Inspirational Friendship sponsored

by Vitabiotics. Thank you to Mother and Baby and all of our category sponsors for raising over £27,000 for the Bliss Nurse programme.

Pictured accepting the award is Bliss’ Family Support Manager, Carmel Bartley

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4 Little bliss l Spring 2013

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In this issue

Debate in the House of Commons On Wednesday 6 February, Chris Heaton-Harris MP raised issues around neonatal care in a short debate in the House of Commons.

Chris has been a strong supporter of Bliss and helped ensure neonatal care remains at the top of the political agenda since his first meeting with mum and local campaigner Catherine Allcott in 2010.

In the debate he highlighted: • The cuts to the neonatal nursing workforce in England and the national shortage of nurses to care for premature and sick babies outlined in Bliss’ 2011 SOS report • Progress made locally and nationally since the campaign launched in November 2011 • Remaining challenges which

need to be addressed to ensure babies get the level of care they need and deserve.

Health Minister Dr Dan Poulter, gave assurances that these issues are on his agenda. Poulter commented that he supports the excellent work that Bliss does to raise the importance of high-quality neonatal care. He also said: “I will make sure that I work closely with Bliss. We made a commitment very clearly as a Government to highquality, safe neonatal services. We want to ensure that babies who need neonatal care are given the very best care and have the very best outcomes in terms of their future life and, indeed, the care that they receive on neonatal wards.”

However he went on to admit that more work was necessary: “We now have a Toolkit for neonatal care, and we are looking to ensure

that it is properly implemented across the NHS. Some parts of the country are doing very well in ensuring that the majority of their staff working as nurses in neonatal units have specialist training, but that is not the case everywhere.”

Bliss welcomes these commitments and will be working with Government and the NHS Commissioning Board to ensure these are followed through.

Chris Heaton-Harris MP, who raised issues around neonatal care in a House of Commons debate

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In this issue News

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Cake A Difference Between 14 February and 10 March, hundreds of brilliant bakers helped us to Cake A Difference across the UK. From Aberdeen to Cornwall, in schools and offices, police stations and churches, ovens everywhere were filled with delectable delights as over 170 events took place between Valentine’s Day and Mothers’ Day. We even had a cake sale thousands of miles away in Abu Dhabi!

We’d like to say a special thank you to Baking a Smile for donating cakes to cake sales all over Britain, as well as all the other cupcake companies who threw their weight

behind the campaign and donated their hard earned proceeds to Bliss. Another big thank you goes out to our fantastic celebrity supporters Katy Ashworth, Natalie Anderson and Anna-Marie Wayne.

We are on track to meet our target of £20,000 so we’d also like to say a huge thank you to all our brilliant bakers!

Our very own iPhone app, ‘Bun in the Oven’, was available to download for free the second year in a row and thousands of people baked virtual cakes for Bliss. The highest score submitted in the next few months will win an amazing cake from Lily Vanilli cupcakes. It’s not too late to take part, so if you’d

like to test out your virtual baking skills simply go to the iTunes app store and search for ‘Bun in the Oven’ now. A big thank you to our friends at Langland for their help with this project.

Don’t forget that it’s not too late to Cake A Difference for Bliss in 2013.

We’re still looking for supporters to hold bake sales throughout the year to help raise funds for our vital work. We love to see our fundraisers in action, so please send us any photos from your Cake A Differene bake sales - you never know, it might end up in Little bliss.

For more information, please get in touch by emailing cake@bliss. org.uk or calling 020 7378 1122.

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Olympic and Paralympic heroes support Bliss Double Olympic Gold winner Laura Trott has agreed to be an ambassador for Bliss after being born a month early herself with a collapsed lung. Threetime gold medal winning Paralympics champion Sophie Christiansen has also agreed to become an official supporter of Bliss after she was born two months early with cerebral palsy.

At the time of Laura’s birth 20 years ago, doctors at Princess Alexandra Hospital fought tirelessly to keep her alive. Incredibly, Laura went on to secure two Olympic gold medals for Great Britain in

Track Cycling during last year’s Olympics. Laura decided now is the time to help raise awareness for Bliss, a charity for babies born too soon, too small and too sick in the UK. She says: “Bliss is a charity that is close to my heart and I fully support the belief that babies should have the best possible chance of survival and of reaching their full potential, I know only too well how important this is.”

Sophie became the first Briton to win three Paralympic gold medals at London 2012. She says: “Being born premature myself I know how important a charity like Bliss is. I think it’s also important to raise awareness that babies who were

Laura Trott (top left) and Sophie Christiansen (below) born early and who may have some long term health issues, can still go on to achieve so much.”

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“Join the Bliss Buggy Push and help special care babies across the UK” Chris and Pui, Cbeebies presenters

London Buggy Push at Regents Park Sat 25 May 2013 at 11am

Register now!

Do something amazing this summer, join or organise a Bliss Buggy Push to help create a brighter future for families.

It’s easy with our organisers pack – request one today! www.bliss.org.uk/buggypush2013 www.facebook.com/buggypush e events@bliss.org.uk t 020 7378 1122 Registered charity no. 1002973 Scottish registered charity SC040878

Bliss here to help you In thisis issue Helpline

Call Bliss for advice and support.

Our freephone helpline is open Monday to Friday (9am-9pm).

Freephone

0500 618140 Messageboard

Visit the Bliss messageboard and speak to other parents of special care babies.

Community

Join our online community by liking our Facebook page or following us on Twitter.

Family groups

A place where families with special care babies and children can meet and share experiences in a friendly environment.

Free advice booklets

For comprehensive advice on a range of issues concerning special care babies call the helpline or visit our website.

www.bliss.org.uk

Visit us online. We have messageboards, parents’ stories, advice and information, downloads and much more.

Feature

Say what?

(Welcome to the outside world) It’s almost inevitable that someone, at some point, will make a thoughtless or insensitive comment to you about your baby. In this article Jenny Hulme looks at why they do it and how you might choose to react.

W

hen new mums take their baby home for the first time everyone wants to get a peek at the new addition to the family. That first special outing with the pram usually provokes glorious oohs and aahs from passers-by, who politely ask how old your son or daughter is before going to comment on how beautiful he or she appears.

But when your baby is born

10 Little bliss l Spring 2013

needing special care that experience can be very different.

Family members can be unsure of how to react to the news: do they send their congratulations, or is it not appropriate to celebrate knowing that your baby faces days, weeks or sometimes months in hospital. After leaving the unit and taking your baby into the outside world, passers-by may not know how to react to the site of a baby on oxygen or one

who, by comparison to others they’ve seen, is very small.

In both of these scenarios it can cause some people to panic and make thoughtless and insensitive comments. These comments, although rarely intentional hurtful, can nontheless leave parents feeling more isolated than ever.

When Mandy Argent first took her baby daughter Alice out to the shops she was enjoying feeling like a ‘normal mum doing

normal things’. Alice - who was born when she was 28 weeks - was still on oxygen but doing well and “she looked beautiful,” says Mandy. “I was so proud that we had got out in the sunshine.

Then a woman with a toddler stopped to peep in the pram and when she saw Alice and the tubes all she said was ‘oh dear’ before grabbing her daughter’s hand and pulling her away. I was gutted, and so offended and angry for Alice. I felt really tearful for the rest of the morning, steeled for what people might say or do next, ashamed of myself for pulling the pram hood up so people couldn’t see her.

Sid Hurry’s third son, Leo, arrived when she was 29 weeks pregnant and on holiday with her husband, Jon, and their two sons Jake and Dominic. Leo was in hospital for the first three months of his life - first in Portugal, where he had to have brain surgery, and then in the UK. “I remember when he eventually came home and went out I had everything from ‘oh - he looks so normal’ to ‘you must be pleased to be home and glad it’s all over’. I can see now that most people just didn’t know what to expect, or what to say,” says Sid. “I remember feeling so hurt when people said ‘he looks normal’, like what did they expect? We didn’t know then how many health problems he’d have and were worried sick, so it seemed so insensitive.

But then when people said ‘oh good, he’s fine then’ - we were home from hospital, we were on

the school run, he was six and a half pounds so I guess it looked like everything must be fine - it was like they were dismissing everything we had been through.

The fact was I was carrying around crates of medication - he was on 19 doses a day – not knowing what was going to happen to Leo next didn’t seem to occur to them. I felt so isolated, like no one understood what having a premature baby was like, and what I was going through.”

“I remember feeling so hurt when people said ‘he looks normal’, like what did they expect?”

There are certain moments in life when it seems we are all primed to say and do certain things. The arrival of a new baby is one of those moments.

Whether we’re a relative or friend or complete stranger in the aisle at the supermarket it is our job to tell the parents they have done a great job, comment on how beautiful the baby is, joke about years of sleepless nights.

If your baby arrived weeks or months early, or was born at term needing special care due to an illness, all that goes out of the window. Nothing is as rehearsed, and people rarely know what is expected or helpful. Which is why they can seem to say the most unexpected, unhelpful things that can, understandably, leave you reeling.

There is a whole bunch of

Julia, whose son Ben was born at 26 weeks, says she still vividly remembers an insensitive comment made to her over 20 years ago

research on communication which shows that a lot of our conversations - especially when we’re under stress or taken by surprise - are made up with saying the inappropriate. We combine that with the effort of repairing those things and helping people feel more comfortable. That’s all well and good if the inappropriate words we say are about a person’s age or job or dress sense - or something that can be untangled pretty swiftly and laughed about later. In certain situations, though, when someone has died, or is sick, or - in this case been to hell and back watching their baby struggle to survive it’d difficult to make that kind of chit chat recovery. Chances are, one person backs off wondering why they said what they did hating themselves for being so clumsy - while the other goes home feeling wretched about the comment that was made.

Little bliss l Spring 2013 11

Sid, who gave birth to Leo at 29 weeks when on holiday, had to endure insensitive and dismissive comments from people She says she can now see that “most people just didn’t know what to expect or what to say”

“My first outing with Ben was when he was about five months old,” says Julia Sibley who lives in the Forest of Dean. “He was only 5lb then - he’d just come out of hospital having been born at 26 weeks. I had him in a papoose and I was in a café in town when a lady started talking to me, thinking he was a newborn.

When I told her he’d been born prematurely she was obviously taken aback. After a horrible pause she said ‘you are so lucky, not having had to suffer that pregnancy indigestion you get at 9 months’.

“I had been under such enormous stress I think I blurted out something like ‘I think I’d rather have had indigestion that watch my son nearly lose his life.’ And we both backed out in opposite directions.

“Ben’s just turned 20 and is graduating from college and while I remember that moment so clearly, I can also see that the woman would be mortified if she’d known how hurt I was.”

“The thing to remember when people say the wrong thing is that they are reacting, not giving a thoughtful response,” says Dr Sandra Wheatley, psychologist

12 Little bliss l Spring 2013

and author of Nine Women Nine Lives, a book about the experience of pregnancy and birth.

“People peer into prams expecting to see a jolly, chubby faced baby and to ask how old, to comment how beautiful. They have a script in their head. We all do. When they’re taken aback by what they see and what they hear they will feel shock and empathy and sympathy and probably desperately want to show that, but they usually don’t.

They don’t have time to think that rehearsed script is disrupted - so are most likely to say something that pops into their head which they are probably aware, a second later, has only made the situation worse.

“When people put their foot in it, or say something that distresses others, they should say sorry and stay and sort it out,” says Wheatley. “But we can all be guilty of missing that opportunity and, feeling awkward, retreating fast.”

With everything else going on in your life, having to give people slack for saying the wrong thing and causing you distress may seem like an ask

too much. But understanding why they’ve reacted as they do can - Wheatley hopes - open the door for reshaping this kind of exchange.“If you have had a baby early you need support more than most, and the danger is you miss out on that because conversations - conversations that could be really beneficial and enjoyable - don’t happen.” says Wheatley. “If you can put on your Teflon suit and survive their mistake, knowing that it was a mistake and not meant to hurt - it will allow you to get to the second base rather than letting their first mistake spoil your whole day. Be prepared for their surprise. Tell them it’s been pretty awful but you are so glad to be out with your baby. Tell them how thrilled you are they’re putting on weight, and the difference you are seeing every day. Chances are they’ll tell you how amazing you are, and how amazing your baby is and the conversation will be really useful and make you feel good rather than bad.

It might open the door to new friendships with neighbours or other new mums. With people who really want to understand.”

You cannot be serious!

Up until 2011, Little bliss used to run a cartoon strip called You cannot be serious!

It aimed to help parents raise a smile at those infuriating times when thoughtless comments were made towards them.

Here are three of our favourite episodes from the series.

Bliss cartoon 2_ARTWORK.pdf

1

04/12/2009

15:17

Bliss cartoon 3_ARTWORK.pdf

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10/03/2010

16:56

C

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CM

MY

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CMY

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YOU CANNOT BE SERIOUS!

C

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CM

Your son is so little for his age, I can‛t believe he‛s a whole year old.

Well he was born 14 weeks early so it‛s quite normal for a baby born prematurely.

Ow, that must have been so hard for you.

It was hard for me, my little girl was born a week overdue.

I wish I‛d been lucky enough to have her early!

I wish I‛d been lucky enough to avoid such an ignorant person!

MY

CY

CMY

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Bliss cartoon_ARTWORK.pdf

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YOU CANNOT BE SERIOUS!

C

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... And she started walking just last week, at 13 months!

She hasn‛t stopped since!

27/08/2009

14:07

My Tom started crawling recently… He‛s 20 months old, but was born very premature…

20 months and still not walking?

30 years old and still no manners?

Three top tips from mums who’ve been there 1. Be prepared for people’s reactions to your new baby.

Remember they have no understanding of prematurity, and won’t know whether to sympathise or celebrate.

Have a line you can pull out of your pocket to give them a cue. “We’re so pleased to be home and celebrating...”...”She looks poorly but she’s doing well...” “We’re still worried sick, but glad to be home from hospital.”

Be as honest as you can so you get a more useful response in return.

2. For your first few outings take a family member or friend for support. Prime them on point one above or they might be ready to battle on your behalf if strangers fire inappropriate comments at you and your baby.

3. Get in touch with Bliss to see if you can make contact with mums in a similar situation who live near you. Meeting them for a regular coffee or a walk and enjoying each other’s support can transform these early weeks and lead to lasting friendships, for you and your baby.

Little bliss l Spring 2013 13

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31/8/11

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My neonatal journey

Dads talk

#1 – A rough start Jason Robson, whose son was born at 24 weeks, starts a new series of articles sharing his experiences of having a child who was born prematurely.

A single phone call marked the start of a series of events that would turn our world upside down.

“Lisa’s been taken to hospital. Don’t worry, she’s fine but you need to get there straight away.”

It was just after 9am on Friday 10 July 2009.

Lisa’s pregnancy hadn’t exactly gone perfectly so far (we were at 24 weeks) so another hospital visit wasn’t entirely out of the blue. But still, it was a long drive over to the hospital in Hastings. It’s amazing how the male mind works at times. How is Lisa?

How is the baby? Who is looking after our daughter Hannah? Do I have any money for the car-park? Is now a good time to get some more petrol? Am I too emotional to drive anyway!?

I got to the hospital to see that Lisa was with her mum. It was clear that all was not well and that the baby was on his way. The news wasn’t just difficult to take in, it was impossible. I knew absolutely nothing about premature births. Lisa wasn’t due to give birth until the end of October. That wasn’t just a few weeks early, in my mind it was *months* early. I couldn’t help but feel that this was not going to end well.

The night before Toby was born saw a flurry of activity around the maternity unit at Hastings.

Things were being prepared, and arrangements were being made. The doctors had previously told us his chances were less than 50 per cent of surviving the first few hours, so we knew Toby was going to have to be a fighter to get through this.

Toby was born just after 6.30am on Sunday 12 July after a two hour labour. They had trouble stabilising his blood pressure and breathing, and initial signs were mixed at best. However, we still got to spend a precious few hours with our new son. Hospital staff were having trouble finding a bed for him locally, and in the end a place was found at the Medway Maritime hospital in Chatham.

And so the most traumatic weekend of my life ended, with Lisa remaining in hospital at Hastings, our new-born son forty miles away in Chatham, and our daughter at home being looked after by relatives. It’s only much later that we were able to process the maelstrom of emotions that we were feeling at the time. This wasn’t supposed to happen! Why us? What if our son were to be disabled? What if he were to die? I could see that this had the potential of bringing us closer together as a family or of tearing us apart.

Toby had started on a long journey and would have to face many battles before we would all be together at home as a family. We knew we had stepped into a world we knew little about and that this wasn’t going to be over in a matter of days or even weeks.

There would be both highs and lows to come as we faced Toby’s neonatal journey one day at a time.

Jason writes a blog on issues affecting premature babies and their families at www.jasonrobson.com

Little bliss l Spring 2013 15

Welcome to...Saint Mary’s Hospital, Central Manchester University Hospitals In this issue Showcasing family-centred care in neonatal units across the country The neonatal unit at Saint Mary’s Hospital – part of the Central Manchester University Hospitals NHS Foundation Trust – is a Level 3 medical and surgical unit with 57 cots in total. The unit moved to this building in 2010 and the staff here make the most of the space available. Alongside the excellent clinical care they provide, they also lead the way in the non-clinical and family-centred care they provide to babies and parents.

Tour guide: Louise WeaverLowe Hello, and welcome.

I’m Louise and I’ll be showing you around today. I’m one of three matrons on this unit and I’m extremely proud of the efforts our staff make to ensure that families, as well as babies, receive the best care we can provide.

Then and now When we first moved to this building, the walls were very bare. Our Parents’ Forum suggested decorating these walls with ‘then-and-now’ photos of babies who had been cared for on this unit, alongside some information about their gestation and length of stay, as a way of offering hope to parents whose baby is currently in neonatal care. We’ve had tremendous feedback about these photos – parents have said they’d like more information about these babies and we’re currently putting together a book that explains what happened after these babies left the unit.

We hope to make this a regular ‘yearbook’ over the coming years.

16 Little bliss l Spring 2013

A warm welcome When parents enter the unit they are greeted by this bright and expansive wall that runs all the way down the hall. There is a welcome sign with the five most used languages in Manchester. We have a photo of all the consultants and specialist nurses so families can familiarise themselves with some of the staff they’ll come into contact with – we have over 200 staff on this unit, so unfortunately we can’t have a photo of everyone. There is also a photo that explains the colour coding of nurses’ uniforms on the unit.

The Bereavement Team The unit has a well established bereavement team who support parents through the palliative care process and after their bereavement. The team also support staff with education and training. The unit has a dedicated room “The Snowdrop Suite” were parents can spend time with their baby.

Developmental care The Developmental Care Team consists of dieticians, speech and language therapists and physiotherapists. Like many of the teams here, they not only provide support to families but will work closely with other staff on the unit to ensure they’re knowledgeable about – amongst other things - infant cues, positioning, pain assessment and feeding.

Breastfeeding and expressing support We have a dedicated Feeding Coordinator and Feeding Team. They provide parents and staff with a lot of feeding and expressing support.

Each member of the team has a dedicated hour in their day to go onto the neonatal unit and speak to staff and parents directly. They help build parents’ confidence and experience and encourage staff to speak to parents from day one about how breastmilk can be as important to their baby as a ventilator or antibiotics – and it’s something that only mums can provide for their baby. We understand that not all mums can or want to express milk or breastfeed so we’re here to support them with these decisions and let them know what their options are.

Support for families Sue and Debbie are Family Support Nurses on the unit. They help families as they come onto the unit, assisting them in finding financial support and rooms to stay in, as well as working closely with families and other colleagues on the unit with discharge planning. They’ve made such a difference – before Sue and Debbie were in post, parents wouldn’t know who to ask when they had a question. Some parents would think the nursing staff were there to look after their baby and not them – but as the Family Support Nurses are there for the parents, it encourages them to speak to them and ask questions.

Parents’ Forum Many of the improvements we make to the unit come from suggestions made by our Parents’ Forum. There are about 20 parents in this group who meet every three months on the unit, and lots more who contribute via email.

Any parent who has had a baby on this unit is welcome to join and they have helped us to write our parent booklet, they feed back on ways that we can improve the care we provide to families and they do an amazing amount of fundraising for the unit.

Outreach Team The outreach team was established in 1945 and they cover central, north and south Manchester.

They make contact with parents whilst they’re on the unit to foster a relation with them and find out if there are any issues relating to their baby going home on oxygen, tube feeding or any other long term conditions. Every parent receives resuscitation training as well as information on safe sleeping. They’ll visit the family the first day after discharge and make a minimum of three visits. They have a good relationship with the local paediatric team which helps ensure a smooth transition when they hand the outpatient visits over to them.

Little bliss l Spring 2013 17

In this Real lifeissue

Grandad’s view In this first-hand account Frank Bonney explains what it was like for him, as a grandparent of a child born at 23 weeks, to see both his daughter and granddaughter in hospital after a premature birth.

I

was clearing out a shed when my son-in-law, Duncan, rang me to say that my daughter, Katie, was on the way to Worcester Hospital, as her waters had broken. I received this news with amazement as it was only about 20 weeks into the pregnancy. Things were compounded by the fact that Katie was pregnant with twins and they had lost a little boy only nine months before.

To say I put the phone down in turmoil is an understatement.

I knew there was no point in going to the hospital as I would

18 Little bliss l Spring Winter 2013 2009

only be in the way. I wanted to help but what can you do in such circumstances? The only thing to do was wait and be ready if called upon.

Katie remained in hospital and a coupl of weeks later a little girl, whom they called Izzy, was born at 22 weeks and 4 days, weighing a tiny 1lb 1oz. She died in her parents’ arms a little while later. To lose another child; I could not bear to think of the trauma they were going through, but there was a ray of hope through all this gloom. The other little baby, whose sac was still intact,

showed no sign of appearing.

Eight days later Miss Molly Branchett made her appearance into the world, 23 weeks and 5 days through the pregnancy and weighing 1lb 4oz - or as I always describe it - about two-thirds of a bag of sugar. I felt such relief that at least now the situation was resolving itself and the fate of my first little granddaughter was in excellent medical hands.

I can well remember visiting Katie and Molly for the first time. She was in a ward with three other tiny babies. Here were these little scraps of

humanity, with tubes everywhere, surrounded with all the modern technology of incubators and screens giving off strange alarms and covered with endless lines of data. I think my little grandson described the scene best: he just called it “Molly’s tank and TV”.

I could not believe how small she was and how her skin was almost transparent. I just could not believe that anything so fragile could survive. I wanted to wave a magic wand so Molly would grow up to be big and strong. I have a special relationship with my daughter, as from the age of six I have had custody and brought her up on my own.

There were other things going on in my life at this time that were churning about in my head and totally exasperating me.

One of my hobbies is railway photography and I had arranged to visit Llanddudno for a few days to spend some time on the Welsh

“I wanted to wave a magic wand so Molly would grow up to be big and strong.” narrow gauge railways. Katie insisted that I go and I reluctantly took myself off.

I had had a long distance relationship with a lady who lived in the North West and though we had known each other for over ten years I had decided that we were going nowhere and wanted to end it. Also for about two weeks I had been in contact by email with a lady

from Birmingham called Mo who I was seriously considering asking out. My dilemma was further complicated not only by Katie’s situation but by the fact that she and my grandson had grown quite close to my original companion.

My few days in Wales passed quite quickly and I was able to sort out some of the things that were buzzing in my head.

I decided that I must pursue my new relationship and sent an email to Mo suggesting a date the following Saturday. We met at a lovely old half-timbered pub in Birmingham and from the outset we both knew this would be an ongoing relationship and I resolved to tell Katie as soon as possible. This I did the following Sunday. Katie and I had a meal together and while she was surprised, she wished us both well.

Most of my visits to Molly after that were with Mo and I was pleased to see how well she and Katie were getting along and the interest Mo took in Molly’s progress. There was definite progress, with Molly fighting her way through many setbacks till eventually the day came 101 days after her arrival when she was well enough to go home. I remember that day well. I work full time reading meters for a utility company and was at a caravan park when I got the good news, I was so excited that I drove away with the sub station key belonging to the owner of the site still in my pocket. Some while later I had an irate phone call from my

Frank with Molly, a surviving twin born at 23+5 weeks boss asking what I thought I was doing. I returned to the park the next day, apologised and told her the full story. Whenever I visit now she always asks after Molly and even sponsored me when I ran the London Marathon for the first time.

The years since Molly’s birth have been so emotional but I will close with something that will always live with me. It was Molly’s first Christmas, Mo and I went to Katie’s in the afternoon to deliver the Christmas presents.

We sat in the living room having a Christmas drink, my grandson Ben was playing with his new Lego and Molly lying in a little crib was making her presence felt. I looked at my daughter and her husband and found it very hard to suppress a tear. Things were so good but it could have been oh so different. Yes, she really is “Our little miracle Molly”.

Little bliss l Spring 2013 19

Tesco Loves Baby is a proud supporter of the Bliss Family Helpline Tesco is working with Bliss as their chosen charity, helping support families with premature and sick babies every step of the way.

Tesco Loves Baby Partnership Tesco wants to help all new parents, which is why it’s supporting the Bliss Helpline to make sure you receive the support and guidance you need, every step of the way.

Bliss Chief Executive Andy Cole comments: “We are thrilled that Tesco Loves Baby is funding our helpline, which supports parents of premature and sick babies when they need it most. This generous donation will mean that we can continue our vital work helping families through what is a traumatic and stressful time in their lives.”

Helping parents every step of the way Becoming a parent is a life changing experience and Tesco understands it can also be quite overwhelming. They recognise that mums and dads often need information, expert advice and quality products they can trust at prices they can afford, which is why Tesco has launched a fantastic range of new products for babies and toddlers. You may have noticed our logo on the Tesco Loves Baby Newborn Nappies and Tesco Loves Baby Newborn wipes packaging.

The Tesco Loves Baby Club website provides around the clock support to parents, like you, with features on parenthood, advice from experts, delicious recipes, competitions and great money saving offers. The Club provides helpful parenting advice that’s tailored to your little one’s age and stage.

Whether you are a mum-to-be or growing your family, the Tesco Loves Baby Club offers a wealth of information to help make parenting easier.

Lorna Dickinson, Category Buying Manager for Baby, comments: “Tesco wants to help all new parents, which is why we’re supporting the Bliss Family Helpline. Bliss is a charity very close to our hearts, as we are dedicated to supporting all mums and dads. We are proud that we’re able to help care for parents with premature and sick babies at the time they need it most.”

Special feature Ask an expert Sandie Skinner currently works as a Consultant Nurse in the neonatal unit in Winchester and as a Neonatal Lecturer at the University of Southampton.

She has worked in this specialty for 20 years.

“Dear Sandie, I’ve just brought my baby home after eight weeks in neonatal care and I’m still quite nervous when it comes to putting him to sleep at night. I’ve been tempted to put him in bed with me and my husband so we

Sandie says: It is totally understandable that you are nervous, especially at night time. It is not recommended that you have your baby in bed with you as he may get too hot or be squashed by you rolling onto him in your sleep. It is much safer for him to sleep alone and this includes not sleeping on a sofa with you too. It is also possible that he may get too warm in your bed with you. Overheating has been linked to cot death too and so keeping your baby at the right temperature is important. It is not generally necessary to take his temperature but keep your house at a comfortable temperature (about 18 C) and do not overwrap your baby.

We recommend that for the first six months you have your baby in a cot in your room.

Then, you will be able to hear him and be reassured that all is well. Many parents are surprised at how noisy their baby is when sleeping but find it reassuring once they adjust to the snuffly sounds. Placing your baby on his back to sleep will have been recommended by the hospital and this has been found to reduce the incidence of cot death. By placing your baby on his back with his feet to the foot of the cot and the covers below his shoulders this allows him to lose heat through his head if too warm. Of course, smoking in the house is not

can keep a constant eye on him but I’ve been told this isn’t a good idea. Can you give me some tips on the safest ways for him to go to sleep, and pass on any tips you might have that will allow me to keep an eye on him during the night?”

Jodie, Nottinghamshire

recommended and especially not in the room where he sleeps.

There are several information leaflets which hopefully you were given prior to discharge that emphasize safe sleeping practices. The Foundation for the Study of Infant Deaths and Department of Health produce a leaflet with advice regarding safe sleeping called ‘Reduce the risk of cot death’, see www.fsid.org.uk for further information.

From Bliss…

Parents taking their special care baby home for the first time might be interested to know that the NCT selected Bednest bedside crib allows parents to see, touch and care for their baby from their own bed. The unique see-through panels of the NCT Bednest allow you to see your baby at your level from your own bed, providing reassurance to you and comfort to your baby as soon as they begin to stir unlike a moses basket which has four closed sides.

The NCT Bednest keeps your baby close to you to aid bonding, breastfeeding and less disturbed sleep whilst in their own safe sleep space. It secures to virtually any bed on its height adjustable stand, even with bed- frames allowing you to remain in bed whilst breastfeeding, comforting, and responding to your baby.

Bednests can be bought for £299 or rented for six months for £99.

For more information visit www.bednest.com

0500 618140 (Mon-Fri, 9am-9pm) www.bliss.org.uk hello@bliss.org.uk

Little bliss l Spring 2013 21

Feature

Going the extra mile…

These parents wil be putting themselves through their paces this spring at the London and Brighton marathons respectively

L

ast March, Nick Cairncross’ son, Edward, was born at 24 weeks weighing just under 800g. He didn’t take his first breath until his was seven minutes old, was only given a fifty-fifty chance of survival and was in neonatal care for a total of four months.

Over those four months 22 Little bliss l Spring 2013

Claire Nevill speaks to three parents who, after seeing their babies fight for life on a neonatal unit, decided to test their own resolve by running a marathon and raising money for special care babies. however, so inspired was Nick by his baby’s battle against the odds that he vowed that should ‘Eddie’ make it home, he would take on a challenge where the odds were stacked against him and run a marathon.

“We were expecting twins,” Nick explains, “but the doctors had told us over

Christmas that one of our babies wouldn’t survive. When Lucy went into labour more than three months early, we rushed through all the lights, and Eddie was born very soon after we arrived at the hospital. His brother Douglas was born much later and he didn’t make it.”

Edward fought through

numerous infections and after a few weeks was breathing on his own, smiling and enjoying cuddles with his parents. Then, all of a sudden, he contracted seratia sepsus – a very serious infection, which had taken the lives of two babies in the previous year. Edward was back on a ventilator in intensive care.

It was at this extremely difficult time that Nick struck a deal with Edward. “I said to him, ‘If you make this one, I’ll put myself through some torture too and run a marathon!’”

Displaying his fighting spirit once-more, Edward bounced back and by the Friday – the day of his brother’s funeral he was stabilised and came off the ventilator. “It was a very sad day but tinged with hope for the future now that Eddie was out of the woods,” says Nick, who signed up for the Brighton Marathon 2013 to fulfil his promise to Edward.

The money raised by Nick and all the other Bliss marathon runners this year will help support the Bliss Nurse programme. Bliss Nurses provide a nonclinical role focused solely on supporting the families of babies admitted to neonatal care. The first Bliss Nurse started in June 2011 and Bliss aims to have at least 28 Bliss Nurses in post by 2020.

Nick knows just how crucial the time and support of these

specialist nurses are. Four days after his due date on 6 July, Edward was discharged and welcomed home by his overjoyed parents. “We were closely monitoring him,” says Nick, but one day he just stopped breathing in our arms. I had to resuscitate him right there and then on the sofa. If a nurse hadn’t taken the time to train me in resuscitation while we were on the unit Eddie wouldn’t be here today.”

“I said to him, ‘If you make this one, I’ll put myself through some torture too and run a marathon!’”

Today, Edward is a very smiley, happy and thoughtful baby and Nick is fully focused on raising as much money as he can for Bliss.

“Initially, I was concerned that I wouldn’t hit the fundraising target of £600,” says Nick. But the generosity and support of his friends, family and colleagues totally surpassed his expectations - he has raised £6,000 so far and he’s hoping to go on to hit the £10,000 mark.

You can sponsor Nick by visiting www.justgiving.com/ nick-cairncross

Nick’s son Edward was born at 24 weeks weighing 800 grams.

A year later, Nick is close to raising almost £10,000 for other premature and sick babies

Julie Ebrey

J

ulie Ebrey, aged 47, only took up running last year, when her friend Lisa persuaded her to join a local running club. “In those first few months I once ran 7 miles and felt like I had climbed Everest. But by March 2012 I

Little bliss l Spring 2013 23

Julie, whose son is a surviving twin born at 24 weeks, is aiming to raise a whopping £24,000 - a thousand pounds for each week she carried Mark and his brother

ran my first half marathon. I was so proud of myself.”

Julie had caught the running bug and, always keen to challenge herself, set her sights on running a marathon to raise money for Bliss.

Julie first got involved with the charity in 2004, when she helped to re-write Bliss’ breastfeeding support booklet while her baby Marc was in neonatal care. Julie had gone into premature labour with twins at 24 weeks; she describes her labour as “swift and short”.

“Our first son was born he was so tiny and yet so perfect. He spent his last breaths in our arms. A short while later Marc, named after his father, was born. This time we heard the smallest faintest cry.”

Marc experienced many ups and downs during the 96 days he was in special care. He had heart problems, lung damage and a huge bleed in his brain. Julie explains: “There were so many times when we thought we’d lost him and we had to contemplate end of life care.”

As the days turned into 24 Little bliss l Spring 2013

weeks, Marc slowly got stronger and started to breathe on his own. Now aged 8, he is a happy, healthy boy and still overcoming all the challenges thrown his way.

Julie has been involved with Bliss for many years as a parent rep, campaigner and support group leader. Her company Hardenberg&Co, which distributes baby products in the UK, has given a percentage of its profits to the charity for the past five years. Julie says: “I know only too well the amount of support parents need when they have a premature baby. Over the years I have understood the vital role of organisations like Bliss.”

It’s clear that Julie isn’t someone who does things by halves. As well as taking on the London Marathon itself, she’s decided to raise £24,000 for Bliss: £1,000 for each week that she carried her twins. Julie is hoping to raise the money through corporate sponsorship, donations and through organising events locally.

She says: “At 47 years of age I was worried that

I wouldn’t be able to do a marathon, but age isn’t a barrier. A lady in my running club - who is now 70 - holds records for running the most marathons and she started in her 40s!”

You can read Julie’s blog, where she shares her experience of training for a marathon at: http://julieebrey. blogspot.co.uk/ You can also sponsor Julie by visiting: www. virginmoneygiving.com/ JulieEbrey

Jon Ley

J

on Ley is certainly no stranger to a marathon.

Having conquered the London Marathon in 2005 and the New York marathon in 2007, he is now taking on London for the second time to raise £2,500 for Bliss. “The fundraising has always been as daunting as the training for me,” says Jon, “and it wasn’t until my son Jack was in neonatal intensive care that I thought about raising that much for charity.”

First-time dad Jon describes the moment when his partner

Sarah went into labour at full term in August 2011: “It was all unexpected and happened so quickly. As soon as Jack arrived he was blue and doctors had to resuscitate him, then he was whisked away from us.”

After two agonising hours, a doctor diagnosed Jack with a diaphragmatic hernia. This meant he had a hole in his diaphragm and his stomach and intestines had started to grow into his chest cavity, putting pressure on his lung.

Jack was transferred to St Michael’s Hospital in Bristol to be prepared for life-saving surgery. Two and a half weeks later, Jon was delighted to be holding his baby for the first time following his successful operation.

“As the drugs wore off and the tubes slowly came

delayed side effects from his operation and had to have an emergency operation to remove part of his bowel.

Jack recovered well from this but just before his first birthday in July 2012 he had to have specialist surgery when doctors discovered fused sutures at the top of his skull which can prevent brain growth.

Jon says: “Each and every time we were in hospital Jack amazed us with the strength and speed with which he recovered. He’s now doing really well and is only a little bit behind developmentally.”

When Jack was in intensive care Jon read many of Bliss’ leaflets from cover-to-cover to pass the time. He says: “I read about someone who had run the marathon for Bliss and I felt I also wanted to

“It wasn’t until my son Jack was in neonatal intensive care that I thought about raising that much (money) for charity” out, we could finally enjoy cuddles with Jack. It was strange seeing how big he was compared to the other prematurely born babies on the unit,” says Jon. “After seven weeks in intensive care he was stable enough to come home and it was up to us to take control.”

Two months later Jack was admitted back into intensive care after he suffered

raise money for such a good cause.”

Jon started his fundraising at the beginning of the year and he’s already well on track to hit his target. “When you first create your Just Giving page and see the target amount on there, you think it’s quite a tall order. But once you get going it’s really not that bad.” Jon has spread

2013 marks the first year that Jon, a seasoned marathon runner, will be raising money for charity after his son, Jack, was born at term with complications that required special care

the word on social media and has had donations flooding in.

Jon has been putting in the training runs throughout the year, having done numerous local half marathons. “It doesn’t take much to get me out the door for my long training runs at the moment, as I owe it to everyone who’s sponsored me,” says Jon You can sponsor Jon by visiting: www.justgiving. com/jonathan-ley

Little bliss l Spring 2013 25

Look at them now...

Emma Cox

Emma (far right) today with her mum, dad and brother showing few signs of her difficult start

In 1996, Emma Cox was born ten weeks early, weighing 2lb 9oz, just over a bag of sugar. Her mum, Rachael, did not want to think about what the future held. Sixteen years on from that ordeal, Emma and Rachael talk to Gemma Pritchard about the amazing progress they both have made.

J

ust over half-way through her pregnancy, Rachael was rushed into hospital and told her blood pressure was dangerously high and her baby would have to be delivered early.

Rachael remembers very little from that point onwards: “My vision was affected because of the high blood pressure – when the nurses realised I understood the numbers on the blood pressure monitor they turned it away from my sight.”

Emma was born by emergency c-section at 29+5 weeks. “It was touch and go for both of us; the medical staff told my husband,

26 Little bliss l Spring 2013

John, to take it hour by hour, day by day. They weren’t sure who would be going home.”

John daren’t think about what the future held as he watched his wife and baby fight for life.

It took a whole seven days after giving birth until Rachael began to show signs of recovery from her high blood pressure – it would be three years until it was fully brought back under control.

Emma meanwhile was in intensive care, battling against a number of complications. Emma says: “During my stay in Intensive Care I needed ventilation to help me breathe. I had numerous bradycardias each day, which is

when I stopped breathing and needed extra support. I was also born with fluid on my brain and had to have it monitored to ensure that it drained away. I had to be tube fed through a nasalgastric tube.”

After those first few traumatic days, Emma started to show daily improvements; the fluid on her brain drained away, and she went from strength to strength.

“She showed us her spirit,” says Rachael.

All this specialist care cost over £1,000 per day per baby in 1996. Rachael remains extremely grateful to the staff at the neonatal unit in Kettering who

took such good care of Emma.

They have since completed a number of fundraising challenges including a sponsored swim a few years ago which raised £750 for the unit. “The staff were just incredible, special people; nothing was too much trouble for them. They had the patience and time to teach you how to care for such a small baby.”

Eventually returning home with Emma – still weighing only 4lb and dressed in doll’s clothes -

“We were open with Emma about what she had been through; it just shows what amazing spirit she had.”

Rachael and John were still in shock from their experience. But they embraced their new life with Emma and set out to do all they could from day one to aid her development. “We worked exceptionally hard to ensure we stimulated her and read to her daily to support her cognitive development; it was a wholefamily effort from the beginning.

We took on board all the advice offered by staff in the unit. We wanted to know that although she had had a difficult start we had done all we could to help her.”

Having prepared themselves for further difficulties, they were both amazed at how healthy Emma was - her only problem of note during her early years

was when she caught a cold and developed bronchiolitis and pneumonia at 14 months and had to be hospitalised for two weeks.

But, as Rachael says, this could happen to any toddler, and Emma fought the infection off.

“As she grew up she was always a little bit smaller than her friends, but otherwise you couldn’t pick her out as a prem baby. She was absolutely fine, which was just incredible. We never dreamt that Emma would do as well as she has done when you think of the start she had,” says Rachael.

Shortly after Emma was born Rachael and John went on to have a second child, Jack, now 15. During that pregnancy the hospital closely monitored Rachael for any signs of a reccurrence of pre-eclampsia, and kept her on a low dose of aspirin to help prevent it.

Rachael remained in close contact with some of the other families who had been on the unit with her and Emma, and says that Emma and the other children – who are still good friends –always knew they were special. “We were open with her about what she had been through; it just shows what amazing spirit she had.”

Emma went on to excel at school as well as enjoy a packed extra-curricular schedule, including rhythmic gymnastics, trampolining and working towards her young leader qualification as a Girl Guide.

Now aged 16, Emma has recently started sixth form. “She amazed us all last summer with her fantastic GCSE results (4 A*s, 4

Despite her prematurity Emma has flourished, going on to achieve excellent GCSE results

A and 3 B grades)”, says Rachael.

Emma is studying for A Levels in maths, chemistry, biology and business, and hopes to go on to train as a Primary School teacher, with a maths or science specialism.

Emma and Rachael have gone back to the unit in Kettering at landmarks such as Emma’s sixteenth birthday and her results day to see the staff, who say they are ‘part of their community’.

“We are all so grateful to them; we make sure we take plenty of chocolate and flowers whenever we go,” says Emma. “It’s strange to imagine I was once so tiny in one of those cots.” She adds: “I hope that my story will help people to keep fighting and not give up hope. Everyone thought there would be more side effects to my being born so prematurely but it just proves anything is possible.”

Little bliss l Spring 2013 27

In this issue Feature

Ode to hope People deal with significant events in their life in different ways. Nikki Beale, whose daughter was born at 25 weeks, and Anthony Hibbs, who himself was born early at 27 weeks, used poetry as a means of expressing their thoughts and emotions on having, or being, a baby in special care. Here, they share their poetry with Little bliss readers.

N

ikki Beale’s daughter, Pippa, was born unexpectedly on 2 October 2012 at 25 weeks 5days. Pippa weighed 1lb 10oz at birth and like all premature babies was a little fighter, but her neonatal journey was not without its ups and downs: Nikki thought Pippa was on the road to recovery in December and planned on her being home for Christmas. However, she took a turn for the worst and caught an infection she couldn’t fight. She was re-ventilated and rushed back into intensive care. The doctors could not find the source of the infection and were unsure of how to treat it. At one point Nikki thought she might lose her daughter and that her little body could not fight anymore.

Nikki wrote this poem for her daughter after 11 weeks in NICU. Nikki said: “I would love it if you could publish this poem in Little bliss as it relays my thoughts

18 Little 28 Littlebliss blissll Winter Spring 2009 2013

over the last 11 weeks and it may help other mums and dads in the same situation. Neo-natal is such a roller-coaster. You have to learn to take the ups with the downs.

Babies go downhill so fast, but they also recover as quickly.

We don’t know what, if anything, will develop in the future because of her prematurity, but we will deal with that when we need to and until then we will just enjoy our little miracle!”

Pippa came home after 100 days in Neonatal, on her due date on 10 Jan 2013. She is now three months old and is a very happy, healthy baby.

Seventy two days I have been sat here Incubator your stay Going home is coming near Sitting, Praying, Hoping, Motherhood confusingly interrupted No time for moping Even though nappy changes and cuddles are restricted Doctors and Nurses run around What a rollacoaster of a ride Never a quiet moment, with all the monitoring equipment sounds Sometimes I just want to curl up and hide From somewhere deep inside A strength I never knew I had I suddenly find Emotions and worry never subside Walking out of hospital leaving you behind Normal life carries on, work, birthdays, festive celebrations Our world stands still Patiently waiting harbours frustration NICU is a long old journey, like walking uphill One day soon you will be out Next week maybe Our time in hospital we will always shout Our precious miracle baby and until then we will just enjoy our little miracle!

Nikki Beale

A

nthony was born on 6 June 1991 at 27 weeks weighing just 2lbs 4 oz. He has likened his birth to a ‘snowday’: his mum didn’t expect it, she wasn’t entirely prepared, but - as a result of it - she did get the rest of the day off work.

After a routine check-up at her local hospital, Carol Hibbs was rushed over 30 miles away to a hospital that could deliver and care for her baby.

Despite a number of complications for Carol, Anthony made great progress and a few weeks later – with Anthony

weighing in at 4lb 4oz – they were both allowed home.

Anthony said: “As I sit here today with my mum there are two things that come to mind: Firstly, that after all the grief I gave her as a newborn, I probably should have been a better teenager, and, secondly that regardless of what happened: the stress, the trauma and the difficulties that we faced, challenged and eventually conquered, neither I, nor my mum would change a thing.”

06/06/1991 Anthony Hibbs On the sixth of June, nineteen ninety one A child was born ‘The only son’ Three whole months before his due He caused the mum such strife, But she’d say he does still too - but now it’s to his wife.

Two of pounds and ounces four This little lad did weigh Smaller than a sugar bag And his father’s hand - where he would lay.

But that relationship grew stilted; between the father And the son As the mother loved her dying boy Her boy ‘the only one’.

And with age their bond grew stronger Although they fought, they cursed, they cried But twenty years a former Mother and son both nearly died.

So they sit here and remember The struggle that they had ‘Our Anthony was three months premature,’ she’d say And fuck it, they were glad.

Anthony was born three months early in 1991. Despite the differences in technology and care 22 years ago, Anthony made great progress and left the unit after a few weeks. He has since gone on to graduate from university and has few lasting signs of his prematurity

If you would like to share your poetry, art, music or story with Little bliss email little@bliss.org.uk Little bliss l Spring 2013 29

Celebrating the amazing work of Bliss’ volunteering community

In this issue

60 seconds with...

This month: Sarah Twite

Sarah, from Hackney, East London, gave birth to her daughter Florence at 27+5 weeks in July 2011. Florence was one of twins, but sadly her little brother Dylan died the day before they were born. Sarah now helps to facilitate a Bliss Family Group.

In what way do you volunteer for Bliss?

I help to facilitate the Bliss Journey Group at Homerton Hospital, for parents whose babies are currently being cared for in the unit.

How did you get involved with volunteering for Bliss?

I sent an enquiry via the website, having started volunteering for a breastfeeding charity and wanted to do something relevant to our experience of having a premature baby.

What do you enjoy about your role as a volunteer?

I love meeting the parents and where possible offering a sympathetic ear and reassurance that life outside is alright.

Has being a volunteer helped you develop any new or existing skills?

It most definitely has developed my

ability to listen and to appreciate all the different circumstances families are in.

Would you recommend volunteering to other parents of special care babies?

Certainly, if you have a gut feeling that you’d like to do something with your experience, I would go for it. I was a little apprehensive

about how I’d feel going back to the unit, if all the emotion of our previous experience would come flooding back and I would feel as though I was reliving it. It wasn’t like that at all. If anything it’s made me move on and hopefully be a support to the parents who are going through what will likely be one of the most difficult times of their lives.

“I just want to say that this is my first full month as a Bliss volunteer and I am absolutely loving it!”

Sid Hurry, Bliss Champion.

16 Little 2008 30 Littlebliss blissll Autumn Spring 2013

Nicky Shah – Helpline volunteer and Luton Bliss Champion

W

hen Nicky Shah’s youngest child Fiza arrived early at 30 weeks early weighing 800 grams, who could of guessed where the journey on the Luton and Dunstable Neonatal unit would take her.

Whilst on the unit with my daughter, I talked with other mums and helped translate what nurses and doctors were saying. I speak four other languages which include Urdu, Gujarati, Hindi and Punjabi. I realised there was a big need for support as most of the parents I met there could not speak English but I was able to help which gave me a real satisfaction despite my own journey.

After going home with my baby I contacted Bliss and spoke to Jennifer who was amazing and helped me become a helpline volunteer.

From my own experience

I knew the importance of being able to have the right support at the right time so volunteering was perfect.

Whilst volunteering for Bliss I grew as a person, the role made me much more caring and compassionate to the needs of others but I wanted to do more. Recently, I’ve decided to become a Bliss Champion in my local area of Luton where my skills of speaking different languages can help others whilst offering emotional support to others at a time when they need it the most in the local neonatal. I really enjoy volunteering for Bliss and I’m so excited about becoming a Champion.

Fiza was born at 30 weeks weighing 800 grams. This experience led her mum, Nicky, to volunteer for Bliss

Feature in the next issue If you’re a volunteer for Bliss and you’d like to feature in the next issue please contact Angie Greenaway-Samuel on angiegs@bliss.org.uk

Volunteer for Bliss We have a wide variety of opportunities. For more information, please contact Bliss on

020 7378 1122 or go to www.bliss.org.uk/volunteer Little bliss l Spring 2013 31

Kids

Try these fun games whether visiting on the unit or at home.

Colouring in competition

Win two tickets to the cinema to see a film of your choice!

Simply colour in the picture above and send to: Bliss colouring competition, 9 Holyrood St, London SE1 2EL The most colourful entry will win the prize.

Competition closes on 1 June 2013.

Jokes

What do you get if you pour hot water down a rabbit hole?

Hot cross bunnies!

What do you call a rabbit that tells good jokes?

32 Little bliss • Spring 2013

Full name_ ____________________________ Age_______ Address_____________________ _ ______________________________________ _ __________________ Postcode___________ email__________________________________

A funny bunny!

Why shouldn’t you tell an Easter egg a joke?

It might crack up!

How do you make milk shake ?

Telephone______________________________

Give it a good scare!

What do monsters eat in restaurants?

The waiters!

Bird masks

These look fantastic and are great fun to play with afterwards.

Directions

Cut out a mask shape from your card. Include a pointy beak and an extra bit at the top for the feathers.

For the feathers use three different colours of paper.

Cut out the first piece to cover the top third of the feather base. Make little cuts into the paper all the way along. Glue this to the base.

Cut the second piece out to cover about 2/3 of the base and cut as before and glue into place. The last piece should cover the bottom 2/3 of the base.

Mark where the eyes should go and cut them out.

You will need 1 sheet of card Coloured paper Glue Scissors Ribbon or elastic

If you are making a female bird cut out eyelashes in the same way as you did the feathers and glue above the eye. For a male bird glue on large eyebrows instead.

Glue on round circles for the cheeks and a diamond shape for the beak.

Punch holes in the sides and either tie on ribbons or elastic to fasten the mask in place.

Find the Easter eggs The Easter bunny has hidden eggs in a burrow. Find your way to the eggs.

Start

Little bliss • Spring 2013 33

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Jane, mum to Ethan, born at 30 weeks

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