Little Bliss Autumn/Winter 2015

Little Bliss For the families of premature and sick babies and Bliss supporters Autumn/Winter 2015

Special feature Ethan’s family look back on his hospital journey as he celebrates his first birthday on World Prematurity Day

And more: Bliss news Family stories Research Dad’s blog Fundraising ideas Look at them now Christmas appeal World Prematurity Day

Bliss, the special care baby charity, 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.

As a charity we are reliant on donations, and continue our work thanks to generous regular givers.

Thanks to gifts received each month from our committed supporters we are able to do the following...

Support We know that when a baby is admitted to neonatal care parents can feel anxious and isolated. Bliss provides practical and emotional support for families during this extremely difficult time, helping them to care for their babies.

Research Bliss supports life-changing neonatal research that improves care and treatments for premature and sick babies. We fight to ensure that the highest standards of care are available to all babies wherever they live.

Awareness Bliss raises awareness of the issues affecting special care babies and campaigns for investment in services. We work closely with doctors and nurses to improve care and fight for essential change within government and the NHS.

Donate To support Bliss’ work, visit bliss.org.uk/donate

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On the cover

20 Born on World Prematurity Day

In every issue...

7 News New report looking at neonatal care

10 Look at them now Luke’s progress following his tough start in hospital

32 Thank you Recognition of some of our amazing supporters

Features

In this issue we also catch up with Luke Fowler, who was born with a life-threatening heart condition and needed surgery to help him breathe. As he turns seven, we hear about his school life and first holiday away with his family in Look at them now on p10.

Caroline Davey, Chief Executive

12 Real life 81-year-old Betty’s unconventional neonatal care

24 Dad’s blog

Comments about Little Bliss? little@bliss.org.uk The Little Bliss team Editor: Gemma Ellis Design: Joana Águas

Jonny’s blog to premature son Joshua

26 Inspiring stories Nine-year-old Finn’s sponsored cycle for Bliss

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

Our icons...

Get involved

Joining forces for special care babies As many of you know only too well, premature babies need extra support at birth. That’s why on World Prematurity Day Bliss joins forces with organisations around the world to shine a light on the issues affecting early babies and their families. It is also a chance to celebrate the strength and resilience of babies who’ve been through neonatal care and come out the other side; and to remember those babies who sadly didn’t go home. Find out how you can support World Prematurity Day 2015, on p 17.

Get in touch

Go online

Donate

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

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Little Bliss News

Bliss news Marathon runners raise £200,000 for premature and sick babies

Starting in Greenwich Park, the 26.2 mile route passed major London landmarks such as the Cutty Sark, Tower Bridge, Parliament, Buckingham Palace and finished on the Mall.

Bliss would like to say a huge thank you to our fantastic runners, as well as supporters who helped to provide an electric atmosphere at the Bliss cheer points.

Earlier this year a team of Bliss runners took to the streets of London for one of the greatest marathons in the world.

Collectively, the 2015 London Marathon team raised almost £200,000 for Bliss – an incredible amount that will go directly to ensuring premature and sick babies and their families have the best possible care and support.

Now in its 35th year, the London Marathon saw over 37,000 runners cross the finish line, including Paula Radcliffe, Jenson Button and 90 Bliss heroes.

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“I was honoured and privileged to run on behalf of Bliss. It was the best running experience I’ve ever had…Truly amazing people, I loved it from start to finish.

What an outstanding weekend”

Ger Thompson, Team Bliss

News

Little Bliss

Share with us to celebrate ten years of Little Bliss Littlebliss The little magazine for Bliss’ biggest supporters Issue 33 - Autumn/Winter 2014 bliss.org.uk/littlebliss

School admissions

Bliss nurses

Read how Bliss Nurses are supporting families around the UK

AND MORE: NEWS l LOOK AT THEM NOW l BABY CHARTER GRANT FUND l WORLD PREMATURITY DAY l VOLUNTEERS l PRUDENTIAL RIDELONDON l CHRISTMAS APPEAL Issue 32_cover_v2.indd 1

19/09/2014 11:04

Little Bliss magazine will be ten years old in April, and we would like you to be part of our special anniversary issue.

You could be part of our team and help make a huge difference to the lives of special care babies by running The London Marathon for Bliss on 24 April 2016.

We will be with you every step of the way to help with training, fundraising and motivation. To be part of our inspirational marathon team, or to find out more, email events@bliss.org.uk or call 020 7378 5746.

We would like photos of anyone born premature or sick, who will be celebrating a birthday in spring/summer 2016 to feature in the next issue. We’d also like to include as many family stories as possible, so please email us to share your experience and support other families.

To share your photos and stories, please email little@bliss.org.uk Please note, we will ask you to complete a consent form before we can publish your photos and we cannot guarantee your photo will be published.

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Little Bliss News

Shaping Bliss’ future: what you told us Over 3,000 people recently completed Bliss’ survey to help us develop a strategy for the next three years. We asked families, health professionals and the general public what Bliss’ priorities should be and how care and support for the sickest and smallest babies can be improved; this is what you said.

It’s most important for Bliss to provide information and support for families: 83 per cent said this should be one of our top three priorities.

83%

We know there is more for us to do to develop information and support to help you care for your baby, and to support a range of families, such as those of babies born full term but sick.

72%

It’s most important for Bliss to provide support while babies are in hospital: 72 per cent said we should prioritise this.

However, you also think it’s important that we provide support after you leave the hospital, both for families who take their baby home and for those facing bereavement.

As well as our

Research work with families, Standards you said Bliss has Campaign a key role to play in supporting research, setting standards for neonatal units and assessing how well they involve parents in their baby’s care, providing training for health professionals, and campaigning for change.

A huge thank you to those who took part in the survey and shared your experiences.

Details of Bliss’ new strategy will be available in the next issue of Little Bliss.

To request a copy email little@bliss.org.uk 6

News

Little Bliss

New report from Bliss demands better for babies A new report from Bliss reveals a shortfall of neonatal nurses in hospitals in England and services which are stretched to the limit.

The Bliss baby report 2015: hanging in the balance, shows the picture of neonatal care across England following a survey of units. It has been five years since Bliss last published its baby report, which also reported a nursing shortfall; Bliss hopes this new report will be a wake-up call to decision-makers and help to raise standards so that all babies born too soon, too small or too sick have the best possible chance of survival and reaching their full potential.

Bliss found that lots of hospitals are facing staffing pressures and we estimate that 2,140 more neonatal nurses are needed in England.

That’s around 1,000 more nurses than in 2010.

41%

41 per cent of units also told us that parents have no access to support from a psychologist or mental health worker.

You can read the full Bliss Baby report on neonatal care in England at bliss.org.uk/ babyreport Reports looking at care in Scotland, Wales and Northern Ireland will be launched in 2016.

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Little Bliss Special feature

Making a difference at St Michael’s In Bristol, the parents of premature and sick babies can spend anywhere from one night to two months in the family rooms at St Michael’s Hospital while their babies are in the neonatal unit.

For many, the rooms become a home away from home and allow parents to stay with their baby during the stressful period of their hospital care.

All this changed when 35 volunteers Before Bliss volunteers visited St from Lloyds data analyst team gave Michael’s earlier this year the family their time as part of their ‘making a rooms hadn’t been decorated since 1991. difference day’. They raised They had tired and dated décor, old used furniture The house is so important over £1,500 to pay for new equipment for the rooms from the hospital and to our parents. Staying in and garden and Bliss only one of the rooms the house allows them to was in use due to rising get the support they need contacted local business at a very stressful time. owners for donations. damp in the other. At Bristol’s Royal Hospital On the day volunteers decorated and for Children, the garden also needed installed items in the rooms, while the renovation as it had become overgrown damp was treated and local plumber, and had little furniture.

Before

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Special feature I have waited so long to make this house somewhere that our parents can go to feel safe and at home.

Now it has a new lease of life.”

Steven Cole, fitted a new bathroom suite.

In the garden, volunteers repaired and varnished furniture and planted new flower beds, making sure it was ready for use the very next day.

Thanks to their efforts, parents now have somewhere warm and comfortable to stay – which is close to their baby. In the last year almost 60 families used the house but now the family rooms are available to twice that number. In celebration of the work done, St Michael’s have renamed the house ‘Bliss House’.

Little Bliss

Kim said: “There is never a day that it is not used. The house is so important to our parents. Staying in the house allows them to get the support they need at a very stressful time in their life.”

With special thanks to Lloyds Banking Group, B&Q Hartcliffe, Harmony Blinds of Bristol and Steven Cole.

If your company could make a difference to special care babies and their families, please contact Sophie Stuttard at sophies@bliss.org.uk

Kim Wybrow from St Michael’s said: “The work in the house is way beyond anything I could have done. I have waited so long to make this house somewhere that our parents can go to feel safe and at home. Now it has a new lease of life.”

Since Bliss House opened in May, many parents have passed through its doors.

After

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Little Bliss Look at them now

“The hospital treatment has been worth it” Look at them now follows the amazing, inspiring, and sometimes miraculous journeys of premature and sick babies. In this issue we meet Luke Fowler, now seven years old, who was born with a life-threatening heart condition.

Birth

Luke was diagnosed with a critical heart defect and transferred to Bristol Children’s Hospital for surgery. Unfortunately, he suffered complications which caused nerve damage and required further surgery.

Luke was born at 31 weeks and five days at the Great Western Hospital in Swindon in 2008.

Mum, Carole, had severe pre-eclampsia with HELLP syndrome* so Luke was delivered by emergency c-section.

*Pre-eclampsia is a condition in pregnancy that causes high blood pressure and fluid retention. It accounts for around one third of all premature births.

HELLP syndrome is considered to be a variant of pre-eclampsia and can be a life-threatening complication.

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3 wks

Luke was discharged from hospital and his parents, Carole and Mark, were finally able to take complete control of his care. At 15 months old Luke sat up on his own.

6 mnths

At six months old Luke underwent tracheostomy surgery to create an opening in his windpipe to help him breathe. He could then return to his local hospital in Swindon.

13 mnths

Look at them now

Little Bliss

To feature in the next Look at them now, email little@bliss.org.uk

When he was three, Luke’s tracheostomy was removed and he was able to breathe independently for the first time since he was born.

Luke began walking (which proved challenging while he was still attached to his ventilator) but he was able to start playgroup one morning a week.

3 yrs

6 yrs

Today

2 yrs

Luke is now seven years old and enjoys playing football and Lego with his friends.

“Luke may need further heart surgery when he is older but he is a happy boy and all the hospital treatment so far has been worth it.”

Last year Luke went on his first holiday to Dublin to visit family. “It was an adventure for Luke and he loved taking off in the plane - he wasn’t at all frightened,” said Carole.

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Little Bliss Real life

Back in time

Left to right: Betty with her brother Dennis and mother in 1937.

Betty at school, taken during World War two in 1944. Betty in 1952.

Every year over 80,000 babies are born needing specialist care, but medical advances mean babies can now benefit from many life-saving treatments.

This sort of technology wasn’t available when Betty Laity (nee Rogers) was born two months prematurely 81 years ago.

Betty was born on 9 August 1934 in Bridgend, South Wales, weighing just two pounds. At that time there were no incubators, and no machines to monitor a baby’s condition. She says: “Instead of being taken to a neonatal unit, I was simply wrapped in cotton wool and placed in a basket next to an open fire in the hospital kitchen, where I remained until my due date. I was never washed with water but wiped all over with olive oil. Having recently researched the equipment used to keep premature and sick babies alive, I realise just how lucky I am to have survived!”

In the two months Betty spent in hospital, her parents were unable to visit her: “My mother was quite ill after the unexpected birth and they had very little money as my father was an out-of-work coal miner. I was ten miles away from where they lived, which, although is a minor journey today, was a very difficult trip in 1934.”

Betty believes that the absence of her parents had a big impact on their relationship: “There was always a lack of closeness between my parents and me. I was already two months old when they received a letter telling them I was

I was simply wrapped in cotton wool and placed in a basket next to an open fire in the hospital 12

Real life

Little Bliss

I am now 81 years old and I wanted to publish my story to show parents that it is possible for a premature baby to live a fruitful and happy life ready to be collected – it would have been like a stranger coming into the house and disrupting their routine.”

problems are linked to my premature birth or the conditions I lived in when I was growing up.”

As she grew up, Betty encountered a lot of problems at school, and attributes this to her premature birth: “Teachers thought I wasn’t clever and that meant a lot of physical punishment. The cane was used frequently and it was not uncommon for me and another girl to have our heads knocked together.

After leaving school, I discovered I had dyslexia. I wish that the worst of my teachers could see how I developed over the years - I am sure they would not have believed it!”

Despite all the obstacles, Betty has gone on to lead a full life: “I have had a variety a jobs throughout my life, including at a ‘milk bar’ (coffee shop) when I was 17. It was there that I met my husband John, he’s convinced that I used to tip coffees over him to get his attention! We married at 22 and have had one daughter, who is 53.

We also have a grandson, aged 22.

John and I have travelled a lot over the years, visiting most of Europe, as well as Canada and America on numerous occasions.

“I am now 81 years old and I wanted to publish my story to show parents that it is possible for a premature baby to live a fruitful and happy life.”

Betty has also suffered a variety of health problems: “I was born with bronchitis and have had chest problems, thyroid trouble, atrial fibrillation and arthritis. We will never know if these

To share your story in Little Bliss, email little@bliss.org.uk

Betty with her husband John on their wedding day in 1957

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Little Bliss Innovations in care

ARNI: training in life-saving resuscitation for babies

Bliss’ mission has always been to improve care for premature and sick babies, from buying new specialist equipment for hospitals to supporting over £7.5 million in research. Today, Bliss’ ARNI (Advanced Resuscitation of the Newborn Infant) training is driving advances in newborn resuscitation for the smallest and sickest babies across the UK. The birth of premature and sick babies can often be more complicated than usual births. Early and poorly babies are more vulnerable, with their immaturity threatening their survival and quality of life. It is vitally important that doctors, nurses and midwives are equipped to deal with high-risk births, and have the specialist skills to look after newborn premature and sick babies in the first few hours of life.

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This is why Bliss teamed up with the Resuscitation Council UK to develop the advanced ARNI training course, piloted at the John Radcliffe Hospital in Oxford. The two-day programme teaches anyone present when a baby is born to expertly manage lifethreatening emergencies occurring on the neonatal unit; this includes babies born prematurely, as well as babies born with congenital abnormalities such as surgical or cardiac problems.

Dr Richard Hearn, Consultant Neonatologist at the Royal Victoria Infirmary in Newcastle, says: “During birth, babies go through the biggest adaptive process of their life.

Term babies are prepared for this, however in a premature baby the fetus is not fully ready for the experience. In a sick baby, even at term, the underlying

Innovations in care

Little Bliss

problems they are having may prevent a safe transition from fetus to newborn. “Most of the situations experienced in ARNI training are relatively rare but this makes it all the more important that there is opportunity for people to practice their approach in the safe environment.

The course delivers a gold standard of current practice and this ongoing development will have a trickledown effect on practice across all levels of neonatal care in the UK.�

Since the ARNI course launched in 2013 over 120 senior doctors, nurses and nurse practitioners have been trained. Further courses will be offered in London, Plymouth, Manchester and Middlesbrough in 2016, resulting in better intensive care treatment for vulnerable babies across the UK. Bliss was able to develop this life-saving training thanks to your generous donations. To support further neonatal training and help improve care for babies please visit bliss.org.uk/donate

How your neonatal experience could support research Every family has a unique experience on a neonatal unit and this can inform future research.

Bliss research volunteers are a team of parents who help to shape research projects by representing parent’s views.

By supporting researchers to develop clear information they help ensure families taking part in research fully

understand the complexities of the project. Most importantly, they ensure projects are measured by what is important to families.

Bliss is currently recruiting new research volunteers. For more information please contact innovations@bliss.org.uk

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Clothing for the most fragile of babies Award-winning fully opening Hospital Collection for babies with cannulas and wires.

Designed together with NICU staff.

Caring for a baby in a hospital environment, who has life-saving IV tubes and cannulas can be difficult.

Using our hospital range of baby clothes designed around wires allows you to more easily perform everyday tasks like changing your baby’s clothes or nappy.

The Beibamboo Hospital Collection: • The Baby Grow and the Sleep-pod have folding mitts that prevent your baby from hurting themselves with their own sharp nails, and stops them from accidentally removing or fiddling with vital medical equipment.

• The Wraparound Trousers have a high, adjustable waistband. Can be left open if remaining umbilical cord is still attached.

• The Bonnet has an opening in front, that allows any wires to the head to pass undisturbed.

Sizes: Preemie (40-50cm) and Newborn (50-60cm).

Made using a very soft bamboo/organic cotton mix. Toxin free.

Use voucher code BLISS15 for a 15% Bliss Reader Discount!

For more information and online shop www.beibamboo.com Fast and free delivery!

NEARLY SEAMLESS • SIZE GROWS WITH YOUR BABY • NO IRRITATING LABELS ON THE INSIDE

Little Bliss

World Prematurity Day 17 November

Help change the lives of the 60,000 babies born too soon in the UK each year.

Many of you may have experienced the early arrival of your baby and may have spent weeks, or even months on a neonatal unit instead of at home with your newborn. This frightening and often isolating experience happens to one in every 13 families in the UK, and affects 28 families every minute worldwide.

Because premature babies need specialist support to help them survive here and around the world, Bliss will be joining forces with international organisations to mark World Prematurity Day on 17 November.

We are part of a global network raising awareness of premature births and raising money to ensure babies born too soon receive the best possible care and have the start in life they deserve.

We hope you’ll join us on World Prematurity Day to help make a real difference to the lives of premature babies and their families. Read on to find out how you can get involved.

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Born too soon: The fac World Prematurity Day 17 November 15,000,000 babies born prematurely each year

1,000,000

will not survive

29 babies

every minute

83%

of parents said it’s important for us to provide information and support

8

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Bliss provided parents with over

250,000

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Bliss figh sickest ba one to o

cts about prematurity 1 in 13 babies born prematurely each year

60,000 every year in the UK

7.8% preterm birth rate

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Parents spend ÂŁ282

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Bliss has helped over

500,000 families since 1979

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Little Bliss

Born on World Prematurity Day “That morning I asked Jon if I should take an overnight bag with me to the hospital, but he said not to bother, thinking I’d be home in time for lunch,” Tara said. Once in hospital however, Tara started to feel worse and doctors realised her rapidly rising blood pressure was a sign she was suffering from HELLP syndrome, a variant of the potentially life-threatening condition, pre-eclampsia.

Tara, Jon and baby Ethan

The thought of having a premature baby hadn’t crossed Tara Burke’s mind during her pregnancy, but an unexpected complication led to her son Ethan being born at 27 weeks gestation, on World Prematurity Day 2014. As Ethan turns one, Tara and Jon look back on their journey through neonatal care.

Tara’s pregnancy had not been straightforward, she had already suffered with deep vein thrombosis and doctors worried she had a liver disorder, when one night she went into hospital feeling ill. Although her blood pressure was higher than it should be Tara was advised to have another test the following day.

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Tara stayed in hospital, and as a precaution steroids were administered to help her son’s lungs develop in case he was born prematurely. Tara didn’t stabilise, and on 17 November 2014 Ethan was delivered by emergency c-section, 13 weeks early.

Tara spent the weeks following Ethan’s birth in the high dependency unit, as she was still suffering from HELLP syndrome.

“At the time Ethan was born my body was fighting its own battle and I was so ill and so drugged I don’t believe I fully took in what was happening,” she said.

Her husband Jon often visited Ethan alone while Tara recovered. “I’d be at the hospital by around 8am rushing between Ethan’s incubator and Tara’s bedside throughout the day before heading home. I had two personas, with Tara I did my best to be strong and positive, but the other side of me was an emotional mess. I think the tiredness made me more emotional, it was

Little Bliss I will always be a NICU mum. I am forever changed by a world I barely knew existed before last November common for me to shed a tear or two at least once a day,” Jon says.

Ethan recovered quickly after birth but suffered a big setback when he picked up a hospital bug and stopped breathing. Tara says, “I will never forget rushing down the hospital corridor at about 4am to find Ethan grey and lifeless. Sitting in the doctor’s office being told it could go either way was one of our darkest moments, but the relief that they weren’t telling us there was no hope at all was simultaneously one of the brightest.”

Ethan had to be transferred to a hospital with a surgical unit, as doctors suspected he had necrotising enterocolitis (NEC), a serious intestinal disease in which tissue becomes inflamed and starts to die. Fortunately,

Ethan was not suffering from NEC and was transferred back to the hospital he was born in, one day before Christmas Eve. “Being a NICU parent is incredibly lonely, especially in a hospital far from home, but Christmas makes it worse.

Being able to return and being closer to family and friends made it bearable, and having a home cooked meal and watching our nieces open their presents gave us some happy times.

“Christmas day is also Jon’s birthday, so it was a relief that the darkest days were behind us and we were back with doctors and nurses that knew us well and made a special fuss,” Tara says.

Ethan made a slow and steady recovery and came home in February. He had Chronic Lung Disease from spending so

Left to right: Ethan on day 35, on day 45 and today.

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Little Bliss I am amazed and thrilled by my miracle baby every day. Watching him enjoy the world and listening to his laugh makes me happier than I thought possible much time on a ventilator, so was initially home on oxygen but is now breathing independently. Ethan is a happy and healthy baby, who Tara describes as a ‘little super baby’.

“It is a very strange feeling having Ethan home - I am amazed and thrilled by my miracle baby every day. Watching him enjoy the world and listening to his laugh makes me happier than I thought possible.

“But I will always be a NICU mum and carry this with me. I am forever changed by the experience and having access to a world I barely knew existed before last November. The friendships, the other families that made the journey with us, and the doctors and nurses that saved our son will always be a huge part of our life.

“Ethan’s birthday will be a big celebration of everything he has achieved, but I’m sure once he is in bed Jon and I will have some quiet time remembering how difficult things were 12 months before.”

Bliss is here to support families like Ethan’s.

To speak in confidence to a helpline advisor, or to access support from another parent, call 0500 618140.

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Little Bliss

Get involved in World Prematurity Day Wear a ribbon Wear a special World Prematurity Day ribbon from Bliss to show your support for premature babies. Visit the Bliss website to get yours or see if your neonatal unit has any available.

Share your story with us We would like to hear your story of having a premature baby. Share with us by emailing wpd@bliss.org.uk and be part of our special World Prematurity Day UK interactive map.

Help us tell one million people about World Prematurity Day by joining our thunderclap.

Sign up to share our special message and help us break last year’s 600,000 people record!

Little Lights Walk Take your friends, family and little ones on a candle-lit walk to raise vital funds for Bliss. You can join us for our Little Lights walk in London on 14 November, take part in a walk in your area or host a walk. Visit bliss.org.uk/littlelights for details and to register your activity.

Turn the UK purple Lighting landmarks up purple is a great way to raise awareness of World Prematurity Day. Help us turn the UK purple by approaching buildings in your area with a letter from Bliss and asking them to shine purple on 17 November. You can also show your support by wearing purple and dressing your little ones in purple on the day too.

Order your free World Prematurity Day participants pack at bliss.org.uk/wpd , by emailing wpd@bliss.org.uk or calling 0207 378 1122.

Follow us on Twitter @Blisscharity Like us on Facebook facebook.com/Blisscharity 23

Little Bliss Dad’s blog

Joshua’s journey - part two On 26 October 2014, my wife Sam unexpectedly gave birth to our son, Joshua David Wright. At just over 27 weeks gestation, Josh was nearly 13 weeks early and weighed 2lbs 10oz.

This is the second part of my blog to him, documenting his journey through neonatal care, from Luton where Joshua was transferred for specialist care, back to Bedford where he was born.

Day twenty two Three weeks old today! You’re settling in quite well at Bedford but the new machines you’ve got monitoring you are rather loud and scary.

Day twenty seven Good day today, it’s the first time you’ve been moved out of your incubator.

Mummy says it’s much better because we can hold your hand more easily, and feel a little less helpless.

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Day thrity Mummy said you’ve been up and down all day today. You’ve been struggling with reflux brady’s* and still have some pretty bad dips. Apparently you did a projectile poo today and mum found it rather funny.

She’s mature like that.

Day thirty three Overnight they moved you back to high dependency. You’re having far too many dips and the nurses are getting worried about you. You’ve been put back on CPAP (continuous positive airway pressure) and won’t be fed for a while until they get to the bottom of what’s wrong with you.

Dad’s blog

Little Bliss

Day thirty five

Day forty nine

You’ve been off CPAP all day and the doctors have been trying to increase your food - so far so good. And I’ve no idea how exactly, but even though you’ve not had any food for two days you’ve actually managed to put on weight - you’re 3lbs 11oz now!

You had your first bath today, very exciting! It’s nice to be able to do some ‘normal’ baby stuff with you.

You didn’t like having your body washed though, you let out a massive cry! You also managed to pull out your nose tube so we took the opportunity to get a few photos without any wires for a change!

Day thirty nine Hurray, you’re no longer on a drip and are back to feeding normally. Mummy and Daddy have been able to relax a bit and you look lovely again, full of beans now like before. Feeding is going well and your bradys and desats* are only happening occasionally with feeds, which we can live with.

Day sixty one Happy first Christmas little fella. It hasn’t been what we’d imagined your first Christmas being like, but you’ve been the best present we could’ve asked for!

Day forty three You had some visitors today. As usual everyone who claps eyes on you says you’re beautiful. I have to agree, even if I am biased. You had another eye exam too and the doctors still think everything looks ok, nothing untoward with your peepers.

Read the third and final part of Joshua’s journey in the next issue of Little Bliss.

Visit bliss.org.uk/little-bliss *Brady’s is a short name for bradycardia which is the medical term for a heart rate that is too slow. This often occurs in premature babies following a period of ‘apnea’, a pause in breathing that lasts longer than 20 seconds. *Desats is short for desaturation, which is when a baby’s oxygen level lowers.

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Little Bliss Inspiring stories

Nine-year-old Finn’s remarkable cycle for Bliss

Finn and Ben Crowder

Bliss is lucky to have thousands of fantastic supporters of all ages who work tirelessly to raise money. One of these supporters is Finn Crowder, who cycled an incredible 140 mileswhen he was just nine years old and raised almost £2,000.

When Finn was born nine weeks early in June 2005, he had significant lung problems and was unable to survive on his own. During the first few years of his life he was very ill and was in and out of hospital, but his parents, Ben and Tracy, would not let this hold their son back.

“We were determined that he would lead a full and normal life, so from an early age we encouraged him to swim and cycle to help build his lung capacity.

He has competed in triathlons and swimming galas since then,” Tracy said.

While working on a school project about how he was born, Finn decided he wanted to raise money for Bliss, and having previously seen other cyclists 26

on the coast to coast route, he decided it was the perfect challenge.

Finn and Ben completed the cycle over three intensive days, starting at Whitehaven in Cumbria and finishing in Sunderland. They encountered some difficult weather conditions and terrain but Finn’s determination never wavered.

Ben said: “It was truly inspiring stuff to witness, we came across lots of other cyclists along the route who were amazed by what Finn was doing and offered their support. What was truly incredible was that Finn even offered other cyclists support if they were finding it difficult.

Inspiring stories

Little Bliss

We could never have imagined that our tiny, sick baby would grow into such a strong and inspirational individual. He has proven that despite being born premature, you can achieve remarkable things.

“At one point during the ride Finn started to cycle up a hill, but realised he had misjudged the correct gear to be in, so he stopped, went back down the hill and started again so he could do it properly.”

Some parts of the journey were tough, even for an adult, but Finn kept going, despite having to cycle 54 miles on the first day, 46 on the second, and 40 on the last.

Ben and Tracy said: “We are incredibly proud of Finn and what he has achieved,

not only with this challenge but how he approaches life in general. We have watched him grow and develop from a frail, small baby to a thriving boy.

We could never have imagined that our tiny, sick baby would grow into such a strong and inspirational individual. He has proven that despite being born premature, you can achieve remarkable things.

“Finn has said that he wants to do other challenges so he can raise more money for Bliss and continue to raise awareness of the charity.”

You can still sponsor Finn and Ben, visit justgiving.com/finncrowder

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Little Bliss Get involved

Best friends Ridelondon for baby Phoebe

Left to right: Baby Phoebe, Sam Crowler

On 2 August 24,000 cyclists took part in Prudential RideLondon-Surrey 100, with over 150 of these raising money for Bliss.

Sam Crowther and his best friend Cait for cyclists for RideLondon. My friend Calvert were a part of Team Bliss and Cait and I decided to sign up as a thank have very personal motivations for taking you to the charity and the staff at the part. Earlier this year Sam’s fiancée hospital.”

Dorigen gave birth to their Sam and Cait have been daughter Phoebe, 13 weeks The whole day was friends since a young age, early. She was critically ill very emotional...I having attended the same and had to be cared for in felt very proud to primary school, high school and hospital for the first three wear the jersey college. They also both signed months of her life. and want to thank up to work in the Armed Forces everyone at Bliss and were posted to Portsmouth Sam said: “It was a very - Cait as a nurse in the Royal Air difficult time for Dorigen and Force and Sam as a sailor in the Royal I, but despite Phoebe’s tricky start in life, Navy. she is now home and doing fantastically.

“We were lucky enough to have access to the Bliss leaflets while we were on the unit and I noticed that they were looking

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Sam said: “The ride went fantastically.

I was really nervous beforehand, especially as I had done a 60-mile

If you would like to be a part of the Bliss team for Ridelondon 2016, visit bliss.org.uk/prudential-ridelondon or call or email the events team on 020 7378 5745 or events@bliss.org.uk

Get involved

Little Bliss

training ride the week before and my legs had cramped up!

“Luckily the sense of occasion and support from people on the day dragged me along. I really struggled in the last 20 miles, but as I approached the finish line the noise and cheers were immense and they really perked me up – getting to the end was an awesome feeling!

The whole day was very emotional as I had such a personal motivation for doing the ride. I felt very proud to wear the jersey and want to thank everyone at Bliss.”

Sam and daughter Phoebe

11 - 14 February 2016 Preheat your ovens and line your cake tins, Bake for Bliss is back!

Sign up for your free fundraising pack today to support premature and sick babies with your own bake sale.

w bliss.org.uk/bake

e bake@bliss.org.uk

t 0207 378 1122

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Little Bliss Volunteers

Proud of the unit I volunteer for

Left to right: Benjamin. Ally Coupland at Hull’s neonatal unit

My name is Ally Coupland and in 2009 my son Benjamin was born at 33 weeks and two days, weighing just 4lbs 2oz.

Although I had many complications during pregnancy Benjamin is now a healthy boy, and is a big brother to twin girls and sibling to three older children – it’s a full house!

Prematurity Day and Christmas, to create a sense of community on the unit. I enjoy working with both staff and parents to represent their views on the ward, this supportive partnership means parents are more involved in decision making as soon as their babies are born, it also means I am able to help the unit make improvements I feel privileged I wanted to give something with parents in mind. to witness the back following my staff working their experience so I am I am proud to say that Hull magic at Hull’s now a Bliss volunteer on the delivers high quality care and neonatal unit neonatal unit in Hull. The makes parents feel respected staff are very welcoming and more confident when and they keep me up-to-date with news caring for their baby. I feel privileged to about the unit which helps me to provide witness the staff working their magic professional support to parents when I on the neonatal unit, especially when visit every week. dealing with challenging situations as well as the general day–to-day.

I also get involved in special events and holidays such as Mother’s Day, World

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Volunteers

Little Bliss

Inside Hull’s neonatal unit The neonatal unit at the Women’s and Children’s Hospital in Hull receives about 500 admissions each year.

The unit cares for premature babies between 23 weeks and 37 weeks gestation and term sick babies in need of surgery, total body cooling and ventilation or respiratory support.

The unit at Hull has had the support of Bliss volunteer, Ally Coupland, since 2014. In that time the unit has completed the Bliss Baby Charter Audit, a practical tool from Bliss which allows hospitals to assess the quality of their ‘family-centre’ care – this is care which supports parents to be the primary caregiver while their baby is in hospital, and is proven to provide better long-term outcomes for babies.

“Having a Bliss volunteer on our unit has improved the communication between staff and parents and helps us identify weaknesses in our service, as well as highlighting areas of good practice,” Tracey Bateman, unit manager says.

Tracy completed the audit tool with Ally’s help allowing for a more complete view of the unit’s service. She says: “Ally came up with many suggestions from a parent’s perspective which helped dramatically. We are now working on action plans together and our biggest project is to make the expressing room a more comfortable and relaxing place for mums to be.”

Fact file Unit Neonatal unit at The Women’s and Children’s Hospital, Hull Royal Infirmary

Location Hull

Level of Unit Level 3 Neonatal Intensive Care Unit

Unit Manager Tracey Bateman

Number of cots 26 (5 intensive care, 7 high dependency, 14 special care)

Annual admissions 500

Bliss support Weekly volunteer (Unit image kindly provided by Hull Royal Infirmary)

For more information about receiving volunteer support on your unit or becoming a volunteer visit bliss.org.uk/volunteer

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Little Bliss Thank you Bliss marked the fantastic contribution of some of our supporters in our annual thank you awards ceremony at City Hall, London.

Making a difference award winners Sue Spence has been instrumental in driving Bliss’ partnership with Tesco Loves Baby and the funds raised have supported our helpline since 2013.

Julian Thomas embarked on a grueling 950km trek from the coast of Antarctica to the the South Pole raising over £14,000 .

Ben Wills-Eve has been a Bliss campaigner since 2011. He’s lobbied MPs, campaigned with the NHS, and arranged for his former MP to tour the neonatal unit where he was born early.

Alex Vere (Public voted) was one of our top fundraisers last year, raising an incredible £27,000 in memory of her daughter, Matilda Vere.

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Special dedication to families award winners Stuart Carter has been volunteering on the Bliss helpline for four years, and has been instrumental in opening out our services to fathers.

Donna Rasdale visits her local neonatal unit weekly. She also gives up her time to source gifts and turns these into much-appreciated gift bags for parents and babies on the unit.

Improving care award winner Stepping Hill Hospital has implemented a parent passport to document babies’ progress and achievements.

They are fully engaged in Bliss’ accreditation scheme and are providing a high level of family-centred care.

Thank you

Little Bliss

Celebrating our wonderful supporters A special thank you Last year over one tenth of Bliss’ overall income was received from individuals who generously included Bliss with a gift in their will. We would like to say a heartfelt thank you to those people and their families who gave such a wonderful and lasting gift.

This has enabled us to support vital neonatal research which aims to improve the survival rates and long-term quality of life for premature and sick babies.

Such donations also allow Bliss Nurses and volunteers to provide advice and vital emotional support for families. We are truly grateful to those who left a gift to Bliss in their will. Thank you.

If you would like to consider a gift in your will you can speak confidentially to Julia Billington on 020 7378 5740, write to her at Bliss, 2nd floor Chapter House, 18-20 Crucifix Lane, London, SE1 3JW or email juliab@bliss.org.uk

We would advise anyone who wants to make a will, or amend an existing one, to see a solicitor.

Thank you to all those who support Bliss with donations and time – we couldn’t continue our work without you.

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Little Bliss

Bliss Christmas appeal 2015 Duncan Wilbur, Dad to Maya and Head of Fundraising at Bliss, shares a personal message and asks you to support this year’s Christmas appeal. of having a premature or sick baby. I am so grateful that Maya is a healthy and happy child today and that we will get to enjoy the festivities together as a family. Sadly, I know all too well that this won’t be the case for thousands of families this Christmas, and my heart goes out to those spending Christmas on the neonatal unit and to those families whose precious babies have died.

“On 7 December 2011, our baby girl Maya was born three months early. We had the most beautiful fragile little girl who we didn’t know would survive the next hour, let alone until Christmas.

The countdown to Christmas ordinarily rushes by in a blur of seasonal goodwill and time spent with family and friends.

But those weeks in the neonatal unit were the most isolating and anxiety ridden of our lives. Every time we left Maya’s cot side we said goodbye not knowing if it was going to be the last time we saw her alive.

With your support we can help premature and sick babies have the best possible chance of survival and reaching their full potential. That’s why I’m asking you to please make a donation, however large or small. I’ve already made my donation, please join me and help bring more families together this Christmas.

As Maya’s dad I know just how terrifying it is to watch your baby struggle to survive and I want to do everything in my power to help other families who are experiencing the agony Please donate and help premature and sick babies receive the best possible care and support. Complete and return the donation form opposite.

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Visit bliss.org.uk/donate

Call us on 020 7378 5740

Please make an extra special gift this Christmas to help premature and sick babies who need our support.

Thank you.

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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I enclose a cheque/postal order made payable to Bliss OR please debit my Switch / Maestro / MasterCard / Visa / American Express / Charity Card (please indicate) Card number: Start date: Signature

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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

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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.

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

Helpline

Call Bliss for advice and support

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