Little Bliss Spring/Summer 2015

Little Bliss The little magazine for Bliss’ biggest supporters Spring/Summer 2015

New research How improved nutrition could mean a better quality of life for premature babies

Born full term but sick Baby Freddie’s journey through neonatal care

And more: News Real life stories Look at them now Reader competition Abseil challenge Bake for Bliss

Bliss is here to help you

Bliss exists to ensure that all babies born too soon, too small or too sick in the UK have the best possible chance of survival and of reaching their full potential.

Helpline

Call Bliss for advice and support.

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

0500 618140 Messageboard

Speak to other families on the Bliss/Netmums messageboard bliss.org.uk/messageboard

Community

Join our online community. @BlissCharity facebook.com/blisscharity

Family groups

Share experiences and find support at our family groups.

Free advice booklets

Order free publications from the helpline or download them from the Bliss website.

bliss.org.uk Visit us online to find parents’ stories, advice and information, downloads and much more.

On the cover

15 Bliss research

In every issue...

4 News All the latest news and updates from Bliss

10 Look at them now Ben’s journey from neonatal care to now

26 Volunteering The difference one hour a week can make

28 Thank you Celebrating our amazing supporters

Celebrating progress I am deligthed to share the results of the pioneering SCAMP study in this issue of Little Bliss. On p16-17, you can read about this Bliss-funded study which shows that improving early nutrition for extremely premature babies can help their brains grow better in the first few weeks of life. It is already benefiting babies like our adorable cover star, Georgina, and shows what can be achieved through neonatal research.

In this issue we also say a big thank you to our bakers, runners, and campaigners who are making such a huge difference to the work that Bliss does and to the lives of premature and sick babies across the UK. Caroline Davey, Chief Executive

Features 12 Real life Born full term but needing specialist care, read Freddie’s story

Comments about Little Bliss? little@bliss.org.uk

22 Trek to the South Pole The incredible journey of the Head Teacher who trekked to the South Pole for his premature godchildren

25 Autumn half marathons How you can get your running shoes on to raise money for Bliss this autumn

The Little Bliss team Editor: Gemma Ellis Design: Joana Águas Little Bliss 2nd Floor Chapter House 18-20 Crucifix Lane London SE1 3JW t 020 7378 5747 e little@bliss.org.uk bliss.org.uk/littlebliss Registered charity no. 1002973 Scottish registered charity SC040878

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© Bliss 2015. No part of this publication may be reproduced without prior permission from Bliss.

Bliss news A big thanks to all who baked for Bliss With over 100 bake sales held across the UK, this year’s Bake for Bliss was the biggest yet.

We’d like to say a massive thank you to everyone who baked and sold cakes, pastries and savouries from 12 - 15 February, and helped to raise over £23,000 for premature and sick babies.

Bake for Bliss is a great opportunity to get creative in the kitchen and raise some dough for Bliss. It’s Bliss’ easiest fundraiser with the chance to get family, colleagues and friends involved and cook up tasty treats in support of special care babies. This year was

extra special for Bliss as we worked with the much-loved book character Miffy, in celebration of her 60th birthday.

We also welcomed Luke Cameron, holder of the Nicest job in Britain to our bake sale at head office in London.

Luke is spending the year working with a different charity every week, including Bliss. Luke got stuck in selling cakes and helped to raise over £600.

We’d like to say a big congratulations to our competition winners, Vicki Baker and Grace Morgan, who baked our favourite Miffy-themed cake, which took over seven hours to make. We also awarded a prize to Sarah Cole, for raising £200 from the auction of her Miffy cake, lovingly baked by her sister-in-law, Jacqui Cole.

Both winners received a Miffy lamp worth over £100.

Our biggest overall Bake for Bliss fundraisers were Louise Toal and Charlotte Witteridge, who raised an amazing £750. As a reward for their tremendous effort they won a Nokia Lumia 820 phone, kindly donated

by O2.

If you didn’t get a chance to take part in Bake for Bliss there’s still time, you can still hold a cake sale at home, in the office or at school at any time in the year for Bliss.

Grab your oven mitts and join the hundreds of budding bakers doing their bit for special care babies this year.

To take part in Bake for Bliss email events@bliss.org.uk or call 020 7378 1122 and ask for your free fundraising pack.

To read about Luke’s time at Bliss visit bliss.org.uk/ new/hq-bake-sale

Little Bliss News Raising awareness of tiny babies on World Prematurity Day

On 17 November, supporters up and down the country joined Bliss for World Prematurity Day – a global awareness day for the 15 million babies born too soon.

Neonatal units marked the day by decorating their units with balloons, posters, and kniting, and holding coffee mornings.

Families also took to the streets with candles and lanterns as part of Bliss’ Little Lights Walk. Thanks to the efforts of some amazing volunteers, several buildings were lit up purple - this included the Leeds First Direct Arena. Internationally, Niagara Falls and the Empire State building also shone purple for premature babies.

We reached 600,000 people with our Thunderclap and over 1,200 families sent in photos of their little ones to make up a special collage. View it online at bliss.org.uk/world-prematurity-day-2015

We would like to thank all the supporters who took part and put all their efforts into spreading the word. We hope you’ll join us again this year on 17 November 2015.

Bliss to end free counselling From 1 April 2015, Bliss will no longer be offering a free counselling service.

We have made the difficult decision that due to continuing pressure on our resources we are no longer able to pay for free counselling.

We understand that counselling has been valuable for many of the parents who have received it and we will continue to provide details of Bliss-trained counselling through our website, however this will no longer be provided free. Please visit bliss.org.uk for more details. Additionally our Bliss helpline offers support to families five days a week from 9am - 9pm.

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Call us on 0500 618 140, or email us at hello@bliss.org.uk for information and support.

You can also visit the NHS website iapt.nhs.uk/services/ to find support in your area. Hospitals in your area may also offer a counselling service.

News

Little Bliss

Delaying your child’s school entry could be made easier Bliss is pleased to announce that since the launch of our Starting School campaign we have made good progress on behalf of parents attempting to delay their child’s school entry in England.

In December 2014 the new School Admissions Code and accompanying Advice on the Admission of Summer Born Children was released. For the first time, prematurity was recognised as a reason that a child might benefit from delaying starting reception year until they are five – especially if they were born in the summer months and had fallen into a different school year as a result of their early birth. Both documents now highlight in detail how a child’s development can be impacted by their premature birth at school age.

Following this, in March 2015 Bliss’ Campaigns and Policy Manager, Helen Kirrane, gave evidence at the Education Select Committee.

While there, she told MPs and the Minister for School Reform, Nick Gibb, that premature children are a unique group, and emphasised the effects on children who are due to start school a whole year before they would have done if they had been born full term.

Helen explained how parents are regularly being told their child will have to miss a year of vital schooling later in their school career if they are delayed. The committee has recommended that the Government considers using a child’s due date to determine when they should start school.

Support our campaign to ensure premature babies have a fair outcome. Email us your experience of trying to delay school entry for your child to campaign@bliss.org.uk

Freecycle: join Bliss for the family cycle ride of the year while experiencing the fun of cycling on trafficfree roads in central London. The route will feature many of the capital’s world-famous landmarks, including Buckingham Palace and the Houses of Parliament. There are different routes to choose from, so it’s the perfect chance for your little ones to take part in their first sponsored cycle for Bliss.

For the first time Bliss is asking you to join us for Prudential RideLondon Freecycle, on Saturday 1 August.

Freecycle is a great opportunity to get the whole family together to raise money for Bliss,

For further information on how you can ride for Bliss email events@bliss.org or call 020 7378 5745

Spring/Summer 2015

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Little Bliss It’s not a game

Reducing costs to families Last year Bliss revealed that on average families of special care babies spend £282 extra per week while their baby is in hospital.

This unexpected cost includes daily travel, When the campaign launched Phil approached parking, food and childcare. Bliss has MPs whose local neonatal unit was the Buscot campaigned hard to reduce these costs to Ward at the Royal Berkshire Hospital in Reading. families, arguing that parents will He spoke to them about the worry about many things when experience of having a premature This campaign really struck their baby is in hospital, and baby and the unexpected cost to a chord with me - parents whether they can afford to be his family. Phil drummed up a lot of need to be thinking about there should not be one of them. support for the campaign, including their baby’s welfare, not Joining the campaign to reduce from his local paper and whether they can afford these costs is Phil Meredith. radio station. anything for lunch.

“I am the dad to two premmies and it took years to pay off the debts I racked up when my daughter was born at 26 weeks and was in a hospital two hours from home. Then when my son was born at 25 weeks in 2013 it all hit home again. The Bliss helpline was a big help, it probably kept me sane, and now I feel I can help raise awareness and bring the Bliss cause to more people,” says Phil.

“When we finally received confirmation that parents would be issued with a card for the hospital’s restaurant, giving them a staff level discount on food worth 40-50 per cent, it was a great feeling. Parents need to be thinking about their baby’s welfare, not whether they can afford anything for lunch.”

Campaign launches in Parliament

Government commits to a review of parental leave in 2018 so it reflects a baby’s hospital stay

Bliss reach 330,000 people with campaign

February 2014

May 2014

July 2014

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Scottish Parliamentary motion asking the Government to implement Bliss’ campaign gains support of 21 MSPs

August 2014

It’s not a game

Little Bliss

Get involved

Our It’s not a game report revealed parents spent £32 every week their baby was in neonatal care on hospital car parking alone.

While parking reductions for parents of babies in neonatal care are available in more than half of all hospitals, the schemes are often hard to access, still very costly and with tough conditions attached. This isn’t fair and we’ve been campaigning for change.

In August 2014, the Government issued a set of Parking principles to NHS hospitals telling them that parking should be free, reduced or capped for visitors who:

• •

Are visiting someone very sick.

Are visiting someone who will be in hospital for a lengthy stay.

Parents with a baby in neonatal care are not just visitors – they are vital care givers to their baby. It’s essential they are with their baby as much as possible. We’ve been writing to hospitals asking them what they are doing to meet these new guidelines, and we’ve already had some great results. But we need to reach more.

If you can get involved in this campaign email your name, local hospital and postcode to

campaign@bliss.org.uk

Never miss a campaign update by signing up to our E newsletter at bliss.org.uk/action-for-bliss

Parliamentary debate on reducing hospital parking highlights Bliss campaign

Bliss speaks to Health Minister Dan Poulter and Shadow Public Health Minister Luciana Berger

Bliss nurse secures reduced parking and free meals for parents at local hospital

Luciana Berger, Shadow Minister for Health, visits hospital to speak to parents about extra costs

September 2014

October 2014

December 2014

January 2015

Spring/Summer 2015

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Little Bliss Look at them now Little Bliss follows the amazing, inspiring and sometimes miraculous journeys of special care babies. In this issue we meet Ben Wills-Eve, now 24, who was born at 23 weeks and six days.

Birth

Ben was born at Arrowe Park Hospital, the Wirral, which was taking part in a clinical trial of surfactant – the drug now given to premature babies to help their lungs develop.

Ben was one of the first babies to receive this drug to help with his breathing.

Ben was born at 23 weeks and six days in 1990 when his mother was admitted to hospital with a burst appendix. He was delivered by emergency caesarean section and weighed 907g.

1 wk

After 13 weeks Ben came home, four weeks before his due date.

“From the moment Ben came home my wife and I knew how worthwhile our struggle had been to keep him.”

7 wks

“We spent ten weeks visiting Ben every day to watch him fight his way back to health”

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17 wks

Look at them now

Little Bliss

It may not have been easy to sit alone helplessly while doctors and nurses fought to keep my wife and son alive as he was born, but when I saw him four hours later it was impossible to imagine living without him. It really has been a case of well done everyone for giving us such unexpected happiness!

Anton Wills-Eve, Ben’s dad

Ben met all his milestones enjoying his first Christmas at home and first holiday in the Lake District.

Ben was deaf for the first nine months of his life, when he was suddendly able to hear. Since then he has had no long-term hearing problems due to his early start in life.

2 yrs

21 yrs

Today

9 mnths

“When Ben married Samantha three months ago everything was really in place for a happy and successful life which nobody told us was even remotely possible 24 years ago.”

Ben has grown up to be very academic, with an Honours BSc in Physiology and an MA in Archaeology.

Send us your story to feature in the next Look at them now, email little@bliss.org.uk

Spring/Summer 2015

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Little Bliss Real life

Born full term but sick When Charlotte Jones found out she was pregnant, she expected a hassle free birth, and a healthy, happy baby. But a memorable first cuddle with her son Freddie was snatched away.

When Freddie was born at full term, he wasn’t breathing. So instead of being placed in Charlotte’s arms he was rushed away so that the medical staff could keep him alive.

“The first few hours of Freddie’s life are a bit of a blur, as we weren’t allowed to see him until he was stable. All I wanted to do was hold the little baby I’d be longing to meet, but instead we were breaking the devastating news to our families that he was very sick.”

Seeing a baby in special care for the first time is a moment that Charlotte will never forget: “Being separated from my baby when he was so sick and only a few hours old broke my heart. When I arrived by his side I couldn’t believe how much equipment was around him, there were tubes and monitors everywhere and he looked so small.”

Freddie was kept alive on a ventilator for the first three days and received ‘cooling’ treatment to reduce the amount of possible brain damage he would have as a result of the lack of oxygen at birth.

In order to receive the care he needed, Freddie had to be transferred to a different hospital.

“I was meant to be keeping my baby safe and warm, but he was being taken to a place I didn’t know in a big plastic box, and I hadn’t even had a chance to have a cuddle.

In the days following his birth we started to process what had happened and realised that it wasn’t a bad dream, it was real life.

People commented on how ‘well’ I was dealing with it and how ‘strong’ I was being, but I think I just went into overdrive.

“All I wanted to do was take my baby home.

The nights were the worst because I was so used to having him with me and suddenly he wasn’t there. I remember feeling numb, but I wouldn’t change the experience – it is a part of who we all are now.”

Over half of all babies leaving specialist care are born full term but sick.* *Figure for babies born in England and Wales.

Source: Imperial College London NDAU report, 2013

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Real life

Little Bliss

When I arrived by his side I couldn’t believe how much equipment was around him.

Freddie was able to go home after ten days, but before they left he had an MRI scan showing a moderate degree of brain damage that was likely to affect his movement.

“Initially we thought he would never sit up unaided, but he is two years old now and is starting to stand on his own. He has been diagnosed with Cerebral Palsy and Nystagmus (involuntary eye movement) but he continues to go above and beyond what was ever expected of him.”

“Every day Freddie is a reminder of how truly blessed we are, but not everyone is as lucky as us, and even with the best medical care

some babies aren’t strong enough to make it through their battle. Bliss is there to help these families through that awful time.”

Charlotte had planned to take part in the 2015 London Marathon to support Bliss, but she had to defer to 2016 as she is expecting her second child.

“I am excited but nervous about the new baby. Every day I am so thankful that we got to keep our one little baby, so the thought of having two makes me feel truly lucky. I really do think Freddie will make a wonderful big brother and am looking forward to my babies playing and growing up together.”

Bliss is here to help. To speak to someone on our helpline call 0500 618140.

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Bliss Buggy Push

Get your Buggy Push on for Bliss Bliss Buggy Push, sponsored by Britax, is a great way to raise vital funds for special care babies while getting out and about with your baby. Host your own Buggy Push this year and order your free organisers pack from our website.

Sponsored by

bliss.org.uk/buggypush

Research

Little Bliss

How you could support neonatal research Bliss supports neonatal research across the UK. We believe having strong evidence to support treatments is vital to ensuring the best possible standard of care for premature and sick babies.

Little lives are extremely fragile, and it takes constant learning to develop better ways of treating babies in neonatal care. By working with families to support research, Bliss is able to ensure parents are at the centre of major research activities and that their experiences are listened to and learnt from.

Taking part in research could help improve the quality of life for premature and sick babies for the future. Read about the results of our ground-breaking SCAMP study overleaf.

Bliss supports research in a number of different ways.

• • • •

We provide letters of support for researchers’ funding applications.

We sit on project advisory groups to represent the voices of babies and families.

We recruit and support parents to be involved in research projects directly.

We can sometimes provide funding for studies, like the SCAMP project featured overleaf.

How can families can be involved in research?

Your experience is unique and important and there are lots of different ways you can get involved in research and help improve neonatal care.

Help design a research project.

Support a research application.

Sit on a project steering group.

Take part in a research project.

If you want more details about how you can be involved in research email innovations@bliss.org.uk or visit bliss.org.uk/research

Little Bliss Research

Improving treatments for special care babies We are thrilled to say that results from a new Bliss-funded study may improve the survival chances and life quality of future generations of premature babies.

The pioneering SCAMP (Standardised Concentrated with Added Macronutrients Parenteral) study found that improving early nutrition for extremely premature babies helps their brains grow better after birth.

Poor head growth - which is directly linked to brain growth - is common among premature babies, however the SCAMP study has shown that it’s possible to prevent this. Study lead, Dr Colin Morgan, Consultant Neonatologist at Liverpool Women’s Hospital, increased the glucose, protein and fats given to one group of babies born at less than 29 weeks’ gestation. The babies were given nutrition, through a special drip, and measured against those receiving the standard feed.

He said: “Our thinking was that we should try to equate what the placenta would be giving the babies had they not been born early. Our SCAMP regimen ensures that they are getting nutrition as soon as they are born, which will be increased so that they are getting full nutrition by day five.”

The study found that the change in head circumference in babies receiving the increased nutrition was greater than in those who were not. The average difference was 5mm and equates to a six per cent 16

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difference in brain size at 28 days of age - this difference was still present when the baby was sent home. Other studies have shown that there is a relationship between head circumference and IQ and it is believed that this increased brain growth could prevent learning difficulties and Cerebral Palsy.

Dr Morgan said: “Optimum nutrition may also mean that babies are better at fighting infection and can help their organs, particularly the brain, develop normally.”

Research

Little Bliss

Q and A Dr Colin Morgan is a Consultant Neonatologist at Liverpool Women’s Hospital and is the lead on the SCAMP study.

Here he answers some key questions about the research.

Why is the SCAMP study so significant?

We had limited information about early nutrition before now, but this study has given us clear results and lots of other important information about how to manage nutrition in the critical period after birth. It feels very good to have completed a research study that has already begun to change clinical practice.

What could this mean for premature babies?

We have shown that better nutrition improves head growth– this could mean that babies brains develop more like they would have done if the baby had stayed inside the womb. The hope is that this improvement means that they could have better IQs and it could prevent learning difficulties. In a few months we will have more information about longer term outcomes as we look at the development of the babies who were on the trial.

When will increased nutrition be available to all premature babies?

The SCAMP regimen has become the standard at Liverpool Women’s Hospital and similar regimens are being adopted across the North West. Hospitals across the country are using the results of this study to look at their own practice.

I am leading a project to ensure every hospital providing care for premature babies has the necessary information to implement similar regimens. We hope to achieve this in the next two years so change is happening rapidly.

For more detail about the SCAMP study read our new Bliss Briefing at bliss.org.uk/research Spring/Summer 2015

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Bliss abseil challenge

The Bliss abseil will be an incredible experience - it’s something really different. We are thrilled to be taking on this big challenge on behalf of tiny babies. Steve Judd, Vodafone At almost 550ft tall, Broadgate Tower is one of the tallest buildings in London.

Do you dare take on the first ever Bliss abseil and descend its 33 floors?

Enter as a corporate team, share it with your friends and family, or go it alone – but hurry, places are limited.

When

Time

Where

Saturday 19 September 2015 Corporate teams

9am – 5am (hourly time slots will be given)

Broadgate Tower, London

Sunday 20 September 2015 Other teams and individuals

Register at bliss.org.uk/abseil For more information call 020 7378 1122

Competition What do you think of Little Bliss?

Let us know and be in with the chance of winning a tablet!

We want Little Bliss to be the best it can be, so we’re asking for you to take part in our short online survey telling us where you got your copy and what you think of it.

The survey will take around five minutes and you could win a fantastic 7� tablet with front and rear-facing cameras and HD display, generously donated by Direct E-Trading Ltd.

Take part at surveymonkey.com/r/Littlebliss Closing date 30 September 2015

Little Bliss Dad’s blog

Joshua’s journey - part one On 26 October after two nights in hospital, my wife unexpectedly gave birth to our son, Joshua David Wright. At just over 27 weeks gestation, Josh was nearly 13 weeks early and weighed 2 lbs 10 ounces. This is my blog to him, documenting his journey…

Day one Well, that escalated quickly! Only a few hours ago your mum was brought down to the delivery room as a precaution, then 30 minutes later, along you came. You were rushed off to the NICU and safe to say, daddy was pretty terrified - but everyone we spoke to was amazing.

Day two Mummy’s still in Bedford Hospital and you’re in Luton, but the doctors said you had a good night on CPAP (continuous positive airway pressure). There’s a machine for everything, and they all keep going off - considering the noise in the NICU you look fairly comfy. I can see why your mum said you were a wriggler.

Day three Mummy’s out of hospital today, and it’s the first time we’ve both seen you together. She was a bit nervous at first because of all the machines, but you could tell from the look in her eyes that she fell in love with you the second she saw you. You’re still looking pretty good, although you did have a blast on the sunbed because you had a bit of jaundice.

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Dad’s blog

Little Bliss

Day four Wow, I can’t believe it, you’re out for cuddles already! You had a good catch up with me and mummy, but if I’m honest you looked more interested in catching a bit of shut eye. You’ve lost a bit of weight apparently and you keep forgetting to breathe, best watch out for that little one.

Day eight It looks like you’re getting an infection, and this forgetting to breathe thing is getting a bit more regular, so they’ve put you back on the ventilator. You scared mum and dad but it sounds like its best to let the machines do the work for now and you can try again when you’re ready.

Day nine You’re still on the ventilator which is ok because you need it, but it’s not great having to watch you like this. The nurses tell us it’s all pretty normal, and a few other mummies said a similar thing happened to their babies around the same time - it doesn’t stop us worrying about you though.

Day ten The doctors seem pretty impressed with you today and mummy’s been doing your cares and changing your nappy - we even got to get you back out for cuddles again finally. Good day today!

Jonny Wright Read parts two and three of Joshua’s journey in the next issue of Little Bliss or online at

joshuasstory.co.uk Spring/Summer 2015

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Little Bliss Journey to the pole

‘Going to the end of the earth for my godchildren’ Julian Thomas recently returned from a 46 day trek from the coast of Antarctica to the South Pole, raising over £13,000 for Bliss. Here, he tells his story and explains his motivation for supporting premature and sick babies.

“In 2006 my close friends Kevin and fundraising for Bliss and I knew Belinda gave birth to Oscar, who had I wanted to help them.” stopped growing and was delivered at Julian, a Head Teacher at Caterham 30 weeks gestation. Then, four years School in Surrey, then began planning later my friends Richard and Sherryn his incredible challenge. “As gave birth to baby Daniel at a child I was fascinated by Biss provided just 26 weeks. explorers, I’ve always loved exceptional help “Both went through similar the outdoors and I actually and support to my experiences, feeling planned my trip to the South friends when they frightened and not knowing Pole when I was just 12. Years needed it the most. what awaited them. For have gone by, adulthood both Oscar and Daniel it was touch and got in the way and I assumed a trek to go, but Bliss provided exceptional help South Pole was something that I would and support to my friends when they never actually do, but one day I asked needed it the most. After Oscar and myself ‘why shouldn’t I do it?”

Daniel left hospital both couples started

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Journey to the pole

Little Bliss

end of the challenge were there any landmarks, when we saw a red and white pole. My first feeling was of total elation and that was closely followed by relief.”

Julian raised over £13,000 for Bliss through his expedition, and his godchildren and friends are incredibly proud of his achievement.

In November 2014 Julian set off from the coast of Antarctica, pulling a sled over 950km of frozen landscape in one of the coldest, highest, driest and windiest places on the planet.

On 10 January 2015, 46 days later, he arrived at the South Pole.

“Everyone has been so supportive since I got back, and Oscar and Daniel are very proud of me. It was a privilege to have spent so much time on a beautiful, fragile and largely untouched continent, and now that I’m back at school my hope is that I can inspire some of my pupils to follow their dreams too.”

He said: “It is difficult to put into words quite how significant a life event this expedition was for me. It was extremely tough – far tougher, physically and mentally, than I had ever imagined – and yet I would not have missed it for the world.

“It was a challenge to remain sickness and illness-free and to cope with the sheer vastness of the landscape.

You could walk for a day and not see anything different at all - only at the

Been inspired by Julian’s expedition? Take part in a challenge for Bliss, find out more at bliss.org.uk/get-involved Spring/Summer 2015

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Little Bliss Get involved

Be part of Team Bliss this autumn Ben Biggs was supported by Bliss during the birth of his three babies.

Following the death of his second child, Isabella, Ben set himself a marathon challenge to raise money for Bliss in her memory.

Training is hard but the thought of raising money for Bliss makes it all worthwhile.

Ben understands what it is like to have a baby in neonatal care as his three children were born at 29, 31 and 35 weeks gestation, and all required specialist hospital care. Sadly Isabella, his second child, died at just four weeks old from E. Coli Septicemia.

“This year Isabella would have been ten years old. So instead of shedding a tear at her graveside as we do every year, I’m going to mark the anniversary of her death by raising money for premature and sick babies.

“Bliss is a wonderful charity, which is dedicated to helping babies who can’t help themselves. Isabella was strong until the end but finally she lost her fight and we lost our little baby girl.”

This autumn Ben is running three half marathons and three full marathons. He will do one run per week around Europe, completing marathons in Rome, Paris, Wales, London, Northampton and Hampton Court.

“Training is hard, particularly on my morning runs before work. I start at 4.30am and the weather can be less than welcoming, but the thought of raising money for Bliss makes it all worthwhile,” said Ben. If you would like to help Ben reach his fundraising target of £5,000, you can donate at justgiving.com/benjaminbiggs/

If you’d like to talk to a trained advisor about a premature or sick baby, or about a bereavement, call our helpline on 0500 618 140 (Monday to Friday, 9am to 9pm)

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Get involved

Little Bliss

Many people have their own special reason for supporting Bliss.

Whether you’ve had a premature or sick baby, or you want to support those who have, there are plenty of ways you can get involved. This autumn why not join Team Bliss in one of our half marathon challenges.

The Royal Parks Foundation Half Marathon This is an iconic and picturesque 13.1 mile race through four of London’s royal parks and past some of the capital’s most historic landmarks. Offering an amazing and unique experience for both runner and spectator alike, the run starts and finishes with a Food and Fitness Festival, live music and family activities.

The Morrisons Great North Run The Great North Run is the world’s greatest half marathon. The 2014 event saw Mo Farah become the first British winner of the race since 1985, in a personal best time of one hour. The course starts in Newcastle upon Tyne, heading over the iconic Tyne Bridge and finishing in the beautiful seaside town of South Shields.

Find out more events@bliss.org.uk

0207 378 5746

bliss.org.uk

Spring/Summer 2015

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Little Bliss Volunteers

“I jumped at the chance to become a volunteer” Claire Gautam is a Bliss volunteer who visits the neonatal unit at Bradford Royal Infirmary every week and runs a monthly support group for the families of special care babies.

Having had a baby in neonatal care herself, Claire understands how frightening and isolating the experience can be for parents.

She said: “As a volunteer I chat to families who have little ones in special care.

“I listen to them and offer information and support wherever I can. I am able to empathise with families as I have my own experiences to reflect on.”

traumatic experience for me, and I was keen to give others the benefit of a friendly face and listening ear.

“I get a great sense of satisfaction from volunteering, whether it is listening to somebody who just needs to talk, or being a distraction for somebody for half an hour I find it very rewarding.”

Claire began visiting the neonatal unit in 2013 and has become a familiar face and friend to many families. With her colleague Naz, Claire also set up a support group for families of special care babies in West Yorkshire.

“I jumped at the chance to become a volunteer, because I would have really appreciated somebody to talk to during my hospital visits. It was a lonely and quite

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“My husband and I feel extremely lucky to have Reece in our lives. He was born at 23 weeks but is now a very active, funny, loving and sensitive seven year old who loves his little brother Phoenix. We are incredibly proud.”

Volunteers

Little Bliss

Volunteering with Bliss Volunteers are integral to Bliss. With over 140 active volunteers they support the work we do in so many different ways - from answering the helpline to offering information and support to families, both on the neonatal unit and in the community. Quite simply we couldn’t do what we do without them!

Karen Williams, Regional Co-ordinator, Bliss Yorkshire

How could you get involved Volunteer on the neonatal unit For those who like face-to-face interaction, you can apply to be a Bliss volunteer on a neonatal unit. You would be offering direct support to families and helping to signpost to Bliss services. This invaluable role requires a minimum commitment of one year and two hours of your time per week.

Support on the Bliss helpline If a remote role is more your style, volunteers can lend support via our helpline. We are currently recruiting for volunteers who can help to run the service between 9am - 9pm Monday - Friday. Bliss helpline volunteers provide information and support to families of premature or sick babies in two hour time slots. Full training will be provided.

Help at a family group Many of our volunteers enjoy the socialising and sense of community our family groups offer. Bliss groups are a great way to chat with local parents who have been through similar experiences. They are run by a minimum of two volunteers and the frequency of the meetings will be agreed before starting (this may vary from two hours weekly, fortnightly or monthly).

If any of these volunteer roles interest you, email volunteer@bliss.org.uk with your name, email, phone number and a little bit about why you’d like to volunteer, and we will send you an application pack. You can also visit:

bliss.org.uk/support-groups-and-champions Spring/Summer 2015

Little Bliss

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Little Bliss Thank you

Celebrating our wonderful supporters Nadia Salfarlie – Bliss volunteer Nadia Salfarlie has been a Bliss volunteer at the Whittington neonatal unit for the past two years. As well as speaking to parents of premature and sick babies on the unit, she also speaks to those families who are expecting to give birth prematurely on the antenatal ward. Many parents have said Nadia helped them prepare and feel less anxious about their experience. Nadia is now going on to study Midwifery at Kings and we wish her the very best of luck.

Thank you Nadia.

Noel Sullivan, Daniel Fletcher and Lauren Samuels – Bliss fundraisers Former Hear’Say band member Noel Sullivan recently returned from his trek up Mount Kilimanjaro where he was raising money for Bliss and The Lullaby Trust. Noel climbed with West End stars Lauren Samuels and Daniel Fletcher, who played alongside him in the musical Rock of Ages.

Noel decided to raise money for Bliss after his sister Alicia-Monique died prematurely at just nine days, old of complications relating to a brain tumour.

As well as climbing to the top of the highest freestanding mountain in the world, Noel has been raising awareness of Bliss’ work online through guest blogs on the Huffington Post website.

A big thank you to Noel, Lauren and Daniel for their support.

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Thank you

Little Bliss

Thank you Clockwise from top left: Catherine Allcott joined the Campaigns and Policy team at the Conservative Party Conference last autumn. She questioned the Minister for Health and lobbied other MPs helping Bliss to make a great impact.

Luke Cameron, holder of the Nicest Job in Britain, joined in with Bake for Bliss when he visited our head office in February. Luke also helped to raise awareness of Bliss’ work on his blog after meeting a Bliss volunteer and visiting a neonatal unit.

Thanks to all those volunteers who help to support families, in particular those who delivered Mother’s Day gifts to families on a neonatal unit.

Dr Seb Taylor, Sarah Twite, Charmaine Bill and Michaela Southworth gave up their time to be on a parent panel talking about their neonatal journeys and answering questions from trainee neonatal consultants. Thank you.

Thank you to Alex Vere and her committee of helpers who organised Bond for Bliss and raised £40,000.

Heather Esplin, a Bliss volunteer and mum of nine premature babies, held a bake sale as part of Bake for Bliss. She raised over £100 at her children’s school.

Thanks to the parent reps in the Yorkshire and Humber Region who are currently giving lots of their time and support Bliss to improve family-centred care.

Bliss would also like to thank the following companies for supporting the Christmas advent calendar campaign: Britax, REN, The Entertainer, MAM, Scentsy, Myfavoritevouchercodes, Art by Law Studio, Abbvie, Tommee Tippee, Irwin Mitchell, MegaBloks, Walking Pet Balloons, Morrison Foerster, AIG, Bednest, Molewood, MilkySnugs, Nexen, Solopreneur / oodlebooks, Makin Dixon, Emmas Diary, Vitabiotics, Natures Purest, Broadgate Estate, Tesco Loves Baby

Join the Little Bliss parent panel If you’re interested in the issues affecting special care babies, we would like your help to improve Little Bliss.

What is the parent panel?

The Little Bliss parent panel is a group who meet to talk about the latest issue of the magazine. They offer advice on how to improve Little Bliss, and suggest new feature and content ideas.

Who can join the panel?

Members need to have experience in the issues affecting premature or sick babies and their families to join the parent panel.

When are the meetings?

The panel meets twice a year at Bliss’ head office in London, but members can contribute to meetings via skype or conference call or email.

For more information about joining the Little Bliss parent panel, please call Gemma Ellis on 020 7378 5747 or email little@bliss.org.uk

Little Bliss shares family stories and aims to help those whose babies are in special care feel a little less alone.

Yes, I would like to help more babies survive.

We rely on the generous support of the public to fund our work caring for premature and sick babies. Our aim is to ensure more babies survive and go on to fulfil their potential. Please give a donation today.

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Please send us your completed donation form to: FREEPOST RTHY - CEZE - JBUX, Bliss, 18-20 Crucifix Lane, LONDON SE1 3JW We would like to keep you up to date with our work.

Please tick this box if you do not wish us to contact you by telephone Please tick this box if you do not wish us to contact you by post We will not pass your details on to any other organisation for their marketing purposes

Bliss can claim 25p for each £1 you give if you are a UK taxpayer.

Your gift can be worth 25% more to Bliss at no extra cost to you. To qualify for Gift Aid you must pay an amount of Income Tax and/or Capital Gains Tax each year at least equal to the amount of tax that all charities and Community Amateur Sports Clubs you donate to will reclaim in that year (6 April one year to 5 April the next). Council tax and VAT does not qualify.

I’m a UK tax payer. Please treat all donations I have made to Bliss for the past 4 years and any I make in the future as Gift Aid donations until further notice.

Bliss, 2nd Floor, Chapter House, 18-20 Crucifix Lane, London SE1 3JW t 020 7378 1122 f 020 7403 0673 e ask@bliss.org.uk bliss.org.uk helpline 0500 618140 Registered charity no. 1002973 Scottish registered charity SC040878

Bliss is here to help you

Bliss exists to ensure that all babies born too soon, too small or too sick in the UK have the best possible chance of survival and of reaching their full potential.

Helpline

Call Bliss for advice and support.

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

0500 618140 Messageboard

Speak to other families on the Bliss/Netmums messageboard bliss.org.uk/messageboard

Community

Join our online community @BlissCharity facebook.com/blisscharity

Family groups

Share experiences and find support at our family groups.

Free advice booklets

Order free publications from the helpline or download them from the Bliss website.

bliss.org.uk Visit us online to find parents’ stories, advice and information, downloads and much more.

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