Little Bliss Autumn/Winter 2016

Little Bliss

Autumn/Winter 2016

For the families of babies born premature or sick and Bliss’ biggest supporters

The essential role of parents in a baby’s neonatal care

What to do when you are overwhelmed with guilt about a premature birth How one mum felt when both her full term and premature babies were admitted to neonatal care

Bliss exists to ensure that every baby born premature or sick in the UK has the best chance of survival and quality of life.

Empowering families Bliss provides practical information to help parents feel more confident in caring for their babies on the neonatal unit. Our volunteers provide a listening ear to support parents during this difficult time.

Influencing policy and practice Bliss raises awareness of the issues affecting premature and sick babies and campaigns for essential change within government and the NHS. We work closely with doctors and nurses to improve care and provide training.

Life-changing research Bliss supports 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 to give them the best possible quality of life.

As a charity we rely on donations. Our vital work is only possible thanks to the support of generous individuals every month.

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

Contents 4 Real life After the early arrival of her first baby, mum Emily didn’t expect to be in neonatal care again with her baby born at term

On the cover

12 How parents can care for their baby in hospital

10 World Prematurity Day special

Parents are essential to their baby’s hospital care I often hear from parents that they feel helpless when their baby is in neonatal care, particularly when they are unable to do tasks like bathing or feeding them.

What many people don’t know is that when a parent is able to provide hands-on care for their baby right from birth it can actually improve the baby’s chances of a healthier future.

A parent’s care is essential for a baby’s development, but sadly this approach, known as ‘family-centred care’, is not available or supported in all neonatal units.

This year, to mark World Prematurity Day on 17 November, Bliss is focussing on the need for family-centred care for all premature babies.

We will also be asking you to join us and help champion the right for every baby to receive the best care. There are lots of ways you can get involved. Find out more on p10-13.

Help Bliss mark this international awareness day and improve care for babies here in the UK

16 Interview Lisa, Family Care Sister in Southampton, shares how it feels to be the first unit to receive a Bliss award for exceptional care

20 Guest blog Mum, Danielle, suffered with overwhelming guilt after her baby was born early. She shares her advice for remembering that a premature birth is not your fault

23 Real life Mum, Lucyanne, talks about how her Bliss Precious Star Fund helps her talk about the death of her son Freddie

26 Parent-to-parent advice Parents share their most creative tips for being on the neonatal unit with your baby

30 Bliss updates A run down of what’s happened since Bliss released its third revealing report about neonatal care in the UK

Caroline Davey Chief Executive

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

This issue of Little Bliss magazine is kindly sponsored

by Britax The Little Bliss team Editor: Gemma Ellis Design: Joana Águas Subeditor: Sally Larsen

Registered charity no. 1002973 Scottish registered charity SC040878 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 2016-17. No part of this publication may be reproduced without prior permission from Bliss.

4 Real life

Baby Ezra

“My baby hadn’t come early so I never thought anything like this could happen” In 2012, Emily was pregnant with her first child, feeling all of the emotions a first mother would feel – “excited, nervous and totally clueless.” After experiencing false contractions once before, Emily realised the second time was very different. She soon found out she was three centimetres dilated and the baby was on its way.

“We were in utter shock. We were being transferred because our baby would be too small to be born at our local hospital. They were phoning around to find a cot for us.

Very scary words – too small and cot. I was eventually transferred and went straight to the delivery room.”

At 31+1 weeks, Emily and Joe’s son Stanley was born weighing just 3lb 8oz. After a quick kiss, Stan was rushed away. “I will

never forget waking up on the postnatal ward, alone, with just a photo of my baby. I felt very detached from the whole experience. The next day, Joe persuaded me to go to the neonatal intensive care unit (NICU). After I got over the shock of the incubator, wires and tubes, I saw our little boy. He was perfect.”

Eventually Stan was big enough to be transferred back to their local special care baby unit (SCBU). “I could finally breastfeed him, which was a special moment after weeks of tube feeding. Then the heat lamp and tubes were slowly removed. Four weeks later, the hospital let us stay with Stan and then we packed him in his car seat and walked out. We couldn’t believe they were letting us do it! After a few

Real life 5

“I will never forget waking up on the postnatal ward, alone, with just a photo of my baby. I felt very detached from the whole experience.“ nights desperately worrying about whether he was okay, we relaxed. Stan is four now and you would never know he was born premature.”

In 2014, Joe and Emily decided to try for another baby. “I was very nervous, but my pregnancy was monitored very closely. At 28 weeks, I had two doses of steroids in case this baby came early too, but when 32 weeks came, I calmed down.”

With guidance, I continued breastfeeding and we were discharged. But that night, Ezra didn’t wake to feed. I rang the hospital and was told to take him to A&E. We lifted Ezra into his car seat. He was now very floppy.”

Ezra continued to sleep through his feeds.

“I knew it was serious when they rushed to get a cannula into him to administer glucose. We were taken to the SCBU where they began to monitor his blood sugars closely. We were eventually told that Ezra’s blood sugar level was very low and he would have to be transferred. Ezra hadn’t come early so we never thought anything like this would happen again.

“The ambulance arrived and brought Ezra to the NICU. Doctors explained they would give him intravenous dextrose (a form of glucose that increases blood sugar level) Just nine days early, Emily gave birth to their to try and stabilise him, then slowly wean son Ezra, weighing 8lbs 13oz. “At first, we him off. However, every time they tried, his were so relieved. He latched on straight blood sugar level crashed. Our consultant after birth, but after that first feed, he explained that babies can have blood sugar became less hungry and more unsettled.

Mum, Emily, with Ezra

Ezra in hospital

6

Real life

“I lived on the ward with Ezra. Joe went home with Stan.

Our family was divided.” problems as they adjust to life outside the womb, and the problem can go away.”

A week later, it was confirmed that Ezra had a condition called hyperinsulinism*.

“Everything sounded so scary, and we burst into tears. They tried to stabilise him but after two weeks we had to be transferred again. We hoped this would help Ezra get better, but were faced with a hospital stay two hours away, plus Stan to look after.

Joe’s paternity leave had ended, so we relied on my mum. I lived on the ward with Ezra. Joe went home with Stan. Our family was divided.”

After more tests, Joe and Emily found out Ezra’s condition was congenital and would not go away, but the information gave doctors a clearer understanding of how to treat their son.

“After narrowly avoiding a near-total pancrectomy (surgically removing the pancreas), Ezra was allowed home.

Finally, we could all be a family together!

“The hardest part of having a premature and a sick baby was being separated from them. I hated feeling out of control of things like feeding. My babies’ care was in the hands of others.

“But Bliss were fantastic. In my many hours on hospital wards, I read every single Bliss booklet. It was also amazing to discover the Bliss Facebook page and talk to others who could relate to my situations. Thank you to all Bliss’ supporters, wherever you are, for all that you do.”

You can find information about a variety of conditions on the Bliss website. Visit bliss.org.uk/were-here-to-help *Hyperinsulinism is when there are above normal levels of insulin in a person’s blood. In order to stabilise the insulin levels, an intravenous (IV) drip of glucose may be needed.

Stan and Ezra today

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8 Look at them now

“Beating all the odds” Every issue we follow the amazing, inspiring and sometimes miraculous journey of a premature or sick baby. In this issue we meet Hayden Williams, who was born at 28 weeks.

st ”Hayden’s greate accomplishment e was beating all th ing odds and becom s my hero. She ha taught me to have hope, and I’m so r grateful to have he as my daughter.”

Birth 2 da ys Hayden was born at Princess Royal University Hospital in Kent in June 2008. She was 28 weeks and weighed just 744g.

After Hayden’s birth, her mum Zoyia was unable to see her for two days while she recovered. Hayden had four blood transfusions in the first few days of her life. “Watching this happen to my baby was as if time stood still. I don’t think I will ever get over it.”

3 months

2 months Hayden successfully started breast and bottle feeding. She even tried on her first dress!

23 September, three weeks after her original due date, Hayden was sent home. “I didn’t know how I was going to cope without the nurses and machines telling me how her breathing was.”

Hayden was looking we ll and doctors had begun to talk about discharging her wh en she suddenly caught a cold and her heart stopped beating. She was quickly put back into her incubator.

Look at them now 9

4 years “My hopes for her future are health, happiness and to carry on being the fighter she has always been.”

1 year On her first birthday, Hayden was already talking, walking and standing up. “You couldn’t let her anywhere near your plate. She loved her food!”

Hayden had been having eye checks since birth but was eventually fully signed off by the hospital.

5 years first time.

At five, Hayden started school for the g mess, cryin ous, nerv a day the of t mos t “I spen to stop me g tellin kept and fine but Hayden was ” crying and that I could go home now.

6 years A major achievemen t for Hayden was passing her ba llet exam with merit, “She is the mo st amazing and kind-hearted person I know. She’s creative and has so much energy.”

Today

Hayden is now a healthy eight-year-old with no ongoing health issues. She is doing very well in school and her endless list of interests range from ballet and princesses to Marvel, Star Wars and Lego.

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

10

World Prematurity Day

Join Bliss in championing quality care for premature babies this World Prematurity Day 17 November is World Prematurity Day, a global movement to raise awareness of premature birth and the sometimes devastating impact it can have on families.

This year, Bliss is focussing on the need for high quality, family-centered care for all premature babies, which puts them and their families at the heart of the care they receive.

Sadly, there are still areas of the UK where premature babies don’t get the standard of care they desperately need, due to a lack of

resources, funding and staffing, when their survival and future quality of life depends on it.

Bliss champions the right of every baby born premature to receive the very best care, and with your help we can get closer to making this a reality.

Visit bliss.org.uk/world-prematurity-day to see all of this year’s activity and please consider a donation to our special World Prematurity Day appeal to help us champion quality care for babies. Thank you.

World Prematurity Day

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Care for premature babies around the world Bliss is a member of the World Prematurity Network, a global coalition working together to raise awareness and prevent premature birth in our countries.

Around the world, 15 million babies are born premature every year and one million will not survive. Shockingly, prematurity is the leading cause of death in children under five, but just like here in the UK, other countries are seeing significant improvements in the health and survival of premature babies due to family-centred care.

Kangaroo care (skin-to-skin contact) is a primary source of care in many countries where incubators are not readily available.

Babies are wrapped close to their mother’s chest for most of the day to help regulate their temperature and establish breastfeeding.

In lower income countries, improved maternal care, and support for mothers, are recognised as key in increasing the survival rate of premature babies.

Turkey’s neonatal survival rates rose significantly after implementing several recommended health care initiatives, including providing support such as accommodation to parents who had to travel to visit their baby.

Despite the highest global rate of prematurity, Malawi is on track to gain the Millennium Developmental Goal for child survival, in part due to the very high uptake of kangaroo care.

In the UK, Bliss provides training for health professionals to promote parental involvement in a baby’s neonatal care. This can improve outcomes for premature babies.

Visit facebook.com/world-prematurity-day to follow the international campaign for premature babies.

12

World Prematurity Day

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14

World Prematurity Day

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When you are in hospital with your baby some of the ‘firsts’ you expected to have with them may not be the way you imagined. But being on the neonatal unit doesn’t mean you should miss out on precious moments. These four parents tell Little Bliss about some magical experiences with their babies’, when they felt involved and central to their care.

Parent: Jenny Bragg

Baby: Jack

About Jack: Born at 25+2 weeks at Warwick Hospital

Parent: Jordan Tristram

Baby: Beau

About Beau: Born at 32 weeks at City Hospital in Birmingham

“The first time I bathed Beau was in a tiny washing up bowl. He cried a bit but was wide awake and looking around. I felt like a ‘real mom’ being able to do something ‘normal’ for my baby that didn’t involve medical stuff. The nurses also taught us how to tube feed and once we were confident, we did everything from administering his medicines and filling out his chart. We would change his nappy, clean his gums, dress him and even get him out the incubator for kangaroo care.

I felt like we were more in control than the nurses and it helped me to bond with my baby.”

“The first time I held Jack was on Boxing Day when he was two weeks old. He was still ventilated and was very tiny. He had many wires to contend with and I was terrified I was going to pull one out! But the whole experience was amazing and I felt a little bit more like a mum. It made me feel more connected to Jack – he seemed to like snuggling up into me and was happy being out of the incubator even if it was just for a short amount of time.”

“We did everything from administering his medicines and filling out his chart. I felt like we were more in control than the nurses and it helped me to bond with my baby.”

World Prematurity Day

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12 “Bliss had a lot of information to help me get involved 9 with my baby. They also 3 reassured me that I was not alone.”

Jordan Tristram

6

Parent: Baby: Erin Winslow Jack About Jack: Born at 28 weeks at Stepping Hill Hospital in Stockport

Parent: Baby: Lauren Alfie Naylor Ramsden About Alfie: Born at 31 weeks at Rotherham Hospital

“Alfie was tube fed for about four weeks so the first time I held the bottle and fed him was just overwhelming.

He just grabbed my finger and looked into my eyes. I will never forget that look! The nurses were amazing and let me do all Alfie’s cares which made me feel so involved. Leaving him in the hospital every night broke my heart and I was worried I would never get to care for my baby like other mums did. But doing his cares made me feel so involved and let me be the mum I wanted to be to my beautiful son.”

“Jack was around four days old when I first tube fed him. He had been really poorly until then and didn’t manage to tolerate milk very long, but it was so lovely to be able to do something to help care for him. At 11 weeks, I was finally able to breastfeed him. It felt amazing and I was so happy and relieved - I felt such a bond. It was really nice to be able to feed him myself, as I had done with my other children.”

Bliss is here for every step of your neonatal journey.

Find information and support at bliss.org.uk/your-journey

15

16

Interview

Lisa Leppard supporting parents on the unit

Leading the way in caring for premature and sick babies Lisa Leppard is the Family Care Sister on the Neonatal Unit at the Princess Anne Hospital in Southampton. Here she tells Little Bliss about how her unit became the first in the UK to be accredited through the Bliss baby charter for its high quality, family-centred care for babies.

Q Tell me about your neonatal unit.

A We are a level three unit with 36 cots, 22 of which are intensive or high dependency care. We also have regional specialities in surgery, cardiology and neurology and a fetal medicine team so that mothers with more complex pregnancies will be cared for in Southampton too.

Q What is your role?

A I have worked on the unit in various roles for 26 years but now I am the Family Care Sister and I provide emotional, practical and financial support to families on the unit. I lead on family-centred care to ensure we provide the highest possible standards of care to babies.

The Bliss Baby Charter is a practical guide to help hospitals provide the best possible family-centred care for premature and sick babies. The charter contains seven core principles which summarise the care, respect and support that vulnerable babies and their parents should receive on the neonatal unit. Read the principles at bliss.org.uk/baby-charter-audit-tool

Interview

17

Q Why did your unit decide to take part

have a breastfeeding team who support mums in expressing and feeding, and we now have a trained counsellor on the unit.

Finally, we have a ‘you said / we did’ board to show parents that we’re listening.

Q What did the Bliss baby charter involve?

A We looked at the seven principles of the

Q How does it feel to be the very

in the Bliss baby charter?

A We really wanted to look in depth at the care we were giving to babies and families and how it could be improved.

baby charter which outline the best way to care for babies and then we audited the care we provide in 2013. As we went along we made changes to the way we worked and applied for a grant from Bliss to help with the refurbishment of our parent accommodation. After a lot of hard work, we were officially accredited in 2016.

first neonatal unit accredited by the Bliss baby charter?

A This is an amazing achievement. It has been a lot of hard work but so worth it. I am incredibly proud of the team in continuing to support parents to care for their babies in the best way possible. This is a work in progress and we will continue to strive to improve the care we give.

Q What changes did you make following

Q What would you say to other units

the baby charter?

A We now have a home team who give families extra support after discharge. Our communication with families has improved, we have a white board and information folders at every bedside and parents are encouraged to help with ward rounds. We

thinking of doing the baby charter?

A It’s great to look at what you do well and what you can improve on for families.

Planning is key and the benefits to babies, families and staff are huge.

The newly refurbished parent accomodation at Princess Anne Hospital

18

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Bliss perform an incredibly important role supporting babies born premature or sick and their families in challenging circumstances. This is why Britax is proud to support Bliss.

20 Guest blog

Guest blog: the guilt of prematurity Danielle is a mother of three beautiful children, two of which were born premature. In this guest blog she sends a message to parents who, like her, may feel guilty when their baby is born premature.

Her message is that while guilt can be a universal side effect, having an early labour is never your fault.

“As parents, we can feel guilty for absolutely anything; from snapping at our children to not saying yes when they ask for something. But pointless guilt that stems from nowhere and that makes us blame ourselves for things that are out of our control is a guilt I know well, and that I carry with me every day as the mother of premature babies.

The guilt does not begin and end with the fact that my baby was born early but the biggest challenge for me is accepting that it wasn’t my fault.

1. I’m sorry I couldn’t keep you safe You may think there was something you could have done to protect your child or stop their early arrival - there wasn’t.

Watching your child feel pain and discomfort is horrendous. Seeing a cannula being moved makes you want to scream, ‘Stop! Get your hands off my baby!’ It doesn’t matter that it’s all to help them.

Accepting that it was entirely out of your hands is the only way to quiet the voice that you did something wrong.

Guess blog 21

2. I’m sorry I couldn’t give birth to you

Not all premature births are via caesarean section, but mine was. Having given birth naturally to our toddler, I felt I missed out on the first moments of skin-to-skin contact, feeling my baby’s tiny breath on my skin and nursing my new born miracle.

I felt guilty that I had been able to give my toddler these precious moments of bonding and not my twins.

“You may think there was something you could have done to protect your child or stop their early arrival - there wasn’t.”

When you are in such an unbearable situation, it is completely normal for your brain to put up a wall. This is how you are able to bear what is happening. Without this coping mechanism, you would have been no use to your baby. Accepting this is hard, but it’s true.

4. I’m sorry I wasn’t there more

3. I’m sorry I was able to leave you There comes a time when the inevitable happens: you have to leave your baby on the neonatal unit. There is nothing natural about being separated from your newborn baby and the empty void it leaves is incomprehensible. My ability to put one foot in front of the other and walk out of the hospital made me feel like a failure as a mother. I felt that I should cry uncontrollably every time, I should have to be dragged, kicking and screaming, from the ward. However, this didn’t happen. I sang to my twins, kissed them goodbye and walked out.

It is not possible to be beside your baby’s incubator 24/7. I felt unbelievably guilty that I was only able to spend a couple of hours a day with my babies. Between expressing, cares and tube feeds, I would be lucky to hold them for 30 minutes. On the neonatal unit, it is also normal to feel bored or in desperate need of a break.

The unit can be a difficult place, but you are not alone.

You have to maintain your home life, be a mother to your other children if you have them, and maintain your mental health.

Please do not put more stress on yourself by feeling guilty for these things.

22 Guest blog

5. I’m sorry I let other people care for you

I hated that other people had to care for my babies and that they found comfort in another person’s touch or smell. I questioned whether they thought of me as their mummy or if they thought I was another nurse. When you are in that situation it’s normal to feel jealous and protective. I felt guilty that I had ‘let’ this happen, as if this was ever a situation within my control.

6. I’m sorry I couldn’t feel more The numb feeling that got me through my neonatal journey made me feel robbed of five weeks with my babies. I loved my babies, but I didn’t feel that overwhelming love and joy that usually builds over the first few days until they had been home for three weeks. When it came, it hit me like a sledge hammer, quickly followed by the remorse that I hadn’t felt like that all along.

Accepting you are not to blame is a long process. Eventually, you’ll realise that you are an awesome parent for

getting yourself and your family through a completely awful time. Writing a letter to my sons explaining everything I felt guilty for really helped me move on, as I could put it away in a drawer and let it go. Whatever process you use to ease the guilt, please remember that you are not alone and you are not to blame.

Could you write our next guest blog?

Email us at little@bliss.org.uk

If you have ever felt like Danielle and would like to speak to someone in confidence call or email the Bliss helpline on 0808 801 0322 or hello@bliss.org.uk You can also speak to other parents on the Bliss messageboard bliss.org.uk/messageboard

Fundraising in memory 23

Freddie’s twin sister Bea, dad Ben and mum Lucyanne

‘To do something in Freddie’s name gave him a way of existing in the world’ Lucyanne Harris is celebrating three things this year: the arrival of her third child, her daughter Bea’s third birthday and winning a Bliss award for fundraising in memory of her son Freddie. Here she explains how opening a Bliss Precious Star Fund helped her cope with her loss and celebrate the life of her son.

In December 2013, Lucyanne gave birth to twins Freddie and Bea at Leeds General Infirmary. Born at 24 weeks gestation they both weighed 700g. Sadly, due to complications during his birth, Freddie died when he was six days old. Twin sister Bea left hospital three months later, weighing 2.5kg and is now a thriving two year old.

It was after raising £800 from friends and family at Freddie’s funeral that Lucyanne and her husband Ben set up the Freddie Harris Precious Star Fund.

“When you’ve lost a child so young, you lose all the things you could do for them, so it helped with the loss to be able to do something for Freddie. It was a helpful way to think of Freddie and acknowledge him on his birthday and the anniversary of his death, but it also seemed to be helpful for our friends and family too.

“To do something in Freddie’s name gave him a way of existing in the wider world.

People didn’t know how to talk about Freddie, but talking about fundraising and

24

Fundraising in memory

why we were doing it made people realise that we were okay to talk about Freddie and didn’t want to forget him.”

Lucyanne had given to charity before, but hadn’t really fundraised very much.

She found the target of £5,000 for a star dedication from Bliss a useful goal.

“It felt like a challenge that I could do for him. I was giving back to Bliss, which had been such a support for us, but also making it better for other people who find themselves in this awful situation.”

Friends and family, including Freddie’s grandparents and aunts and uncles joined in to help achieve the star dedication.

“People want to join in and do something, it helps them show their support without having to have the awkward conversation.”

Match funding from both Ben and Lucyanne’s employers also helped them reach their target. “It’s all about being cheeky and just asking. And because it’s

Bea in hospital at five days old

“The cliché about time healing is true. It’s never going to feel better but you start to be able to remember with happy memories rather than overwhelming sadness.” something I’m doing for Freddie, it pushes me on.”

Support from Bliss was important for the fundraising too. “It’s a lot easier to talk to people who really understand. The leaflets from Bliss raised huge awareness at our events about how common prematurity is and how many people are affected by it.

There is a comfort in knowing you’re not the only person that this happens to and you’re not isolated in the way you feel.“ “The cliché about time healing is true. It’s never going to feel any better but it does

Lucyanne with Bea at two years old

Fundraising in memory 25

get easier to deal with as time goes on.

You start to be able to remember with happy memories rather than overwhelming sadness.”

Bea has now caught up on all her major milestones. “We’re out of the woods with her now and the fundraising in memory of Freddie helps him live on too.”

Last summer Freddie’s Precious Star Fund reached £10,000 and Lucyanne was able to open a Sunshine Fund in celebration of Bea. “I wanted Bea to have something too, I didn’t want her to feel she’s in the shadow of this ‘perfect’ child who didn’t make it. It meant there was something for both of them.”

Bliss was delighted to award Lucyanne Harris the Bliss making a difference: fundholder award in July in recognition of her commitment and fundraising achievement (photograph below).

When a Sunshine Fund reaches a total of £1,000 Bliss has a tree planted as a thank you. Lucyanne organised a tree dedication for both twins and the family visited the woodland on their birthday last December.

“The tree is a lovely way to remember Freddie. We also have his star dedication on the wall at home, it’s so nice to see his name written down and it tells other people that we’re okay to talk about him.”

Baby Felix

She has since given birth to her third child, Felix Arthur Harris on 2 September, just two days before his due date and weighing 8lb 8oz.

If you would like to find out more about Bliss Precious Star or Sunshine Funds, call 020 7378 5740 or email personalfunds@bliss.org.uk

If you have been affected by this article or would like to talk to someone about baby loss and bereavement, please call the Bliss helpline 0808 801 0322 or email hello@bliss.org.uk

Lucyanne at the Bliss awards 2016 with two-year-old Bea

26 Parent-to-parent

Parent-to-parent From one parent to another, seven things I’m glad I did Having a baby on the neonatal unit can be tough, but there are great ways to enjoy your new addition. Here are some creative tips on being there for your baby outside of the hospital routines.

1

Celebrate your child’s birth We understand how intimidating having a premature or sick baby can feel, but don’t forget to congratulate yourself. You just brought a new life into the world and regardless of the complications you may be facing, that is a beautiful thing. Congratulations!

Jackie

5

2

Create a scrapbook Take pictures and document your experience. “The photobook we made is priceless for my husband and I, and for our daughter Florence.

Hopefully it will help her understand her experience when she’s older.”

Michelle

6

Choose from a wide selection of adorable teddies that can be made to match your baby’s birth weight.

“If they have other children, they could draw a picture to hang above your baby on the neonatal unit.”

John

Sarah

Order a birth-weight memory bear

Parent-to-parent 27

3

Write it down Getting your feelings down on paper can be therapeutic for some parents who need a private channel to express themselves. A diary is also a great way to record your baby’s day-to-day life which you can look back on later.

Adija

4

Collect your keepsakes Many parents save clothes, CPAP wires or oxygen masks from their baby’s neonatal experience.

“We kept our daughter’s first hand/ foot prints, her going home outfit and our favourite baby grow. We also used a teddy to show her size in photographs!”

Michelle

7

Get your other children involved It can be difficult for siblings to get to know your new baby if they are unable to visit the hospital or if your baby is in an incubator. One tip is to “have your older child/children give a gift, such as teddy bear, to your new baby. Make this a special gift and the only one that’s allowed in the cot.”

8

Read to your baby Sitting by your baby’s cot or incubator and reading a book to them is a simple, soothing way to connect with your newborn.

Craig

Nareen

Send your advice for other parents to little@bliss.org.uk

28 Events calendar

How you can support babies this year with Bliss From baking cakes to skydiving or running a marathon, there are so many ways you can help premature and sick babies by raising money for Bliss.

Challenges South Coast Challenge 26-27 August 2017 Walk, jog or run 100km, 50km or 25km Ben Nevis 9 June 2017 and 11 August 2017 Hike to the highest point in the British Isles Thames Path Challenge 9-10 September 2017 Walk, jog or run 100km, 50km or 25km Skydive Various dates and locations

Great Wall of China trek 14 April 2017, 6 October 2017, 13 April 2018

Cycling Tour de Yorkshire 30 April 2017 The sportive gives keen amateur cyclists the chance to race the same routes as the professional Tour de Yorkshire Dragon Ride 11 June 2017 Cycle in the UK’s most prestigious sportive.

Starting in picturesque Margam Park, Port Talbot, taking in the beautiful Welsh countryside

Overseas challenges Inca Trail trek to Machu Picchu 22 April 2017, 27 October 2017 21 April 2018 Ho Chi Minh to Angkor Wat cycle 4 February 2017, 30 September 2017 3 February 2018

Prudential RideLondon Surrey 100 and 46 30 July 2017 Cycle 100 or 46 miles on closed roads around London and Surrey in the biggest cycling event in the UK

Events calendar 29

Running Obstacle races

Various dates and locations Tough Mudder A 10-12 mile obstacle course designed to test your strength, stamina and mental grit The Wolf Run Woods, obstacles, lakes and fields...join the pack and try wild running for Bliss The Spartan Race Series The world’s toughest obstacle race Brighton Marathon 07 April 2017 With a stunning backdrop of the sea it’s one of the UK’s favourite runs

Bliss events Bake for Bliss February to May 2017 Bake up some treats and raise some dough for Bliss!

Bliss little heroes Summer 2017 Grab your capes and masks and organise your superhero walk for Bliss Carol singing December 2016 Collect donations for Bliss while you sing carols or hold a carol concert during the festive season

Want to take part?

Contact the Events Team: t 020 7378 1122 e events@bliss.org.uk w bliss.org.uk/fundraise

Bliss little lights walk Organise a walk and light up the night for premature and sick babies

bliss.org.uk/littlelights

30 Bliss updates

In brief Bliss gives thousands to help neonatal units

Bliss is now working with hospitals to apply for local funding for their unit to continue the improvements brought about by the grant fund. Bliss will be focusing on rolling out the Bliss baby charter to all units in the UK (read more on p16-17) to give every premature or sick baby the very best care.

To support this work please consider donating to Bliss at bliss.org.uk/donate

New information on common infectious illnesses in babies Since 2013 Bliss and the True Colours Trust have given over £424,000 to neonatal units across the UK to help them improve their facilities for babies and families. 55 units have received grants of between £1,000 and £10,000 which have typically paid for breast pumps, feeding chairs, furnishings for family rooms, as well as kitchen facilities to support families to stay on neonatal units, and money towards larger structural projects such as renovating parent bathrooms and bedrooms.

The money was given as part of the Bliss baby charter to help units improve the quality of care they give to babies.

As the Bliss baby charter grants come to an end we are proud to say they have enabled us to support significant improvements in the standards of care in neonatal units across the country and gave units the opportunity to make lasting changes to their facilities.

New information to help you reduce your baby’s risk of catching common infectious illnesses is now available from Bliss.

In this Bliss resource you can find out how to see the signs and symptoms of illness, how to prevent the spread of infections and how to get medical help if your baby becomes unwell. Premature or sick babies are more vulnerable to infections so it’s important to know what to do if you’re ever worried about your baby’s health.

You can find this new and updated information at bliss.org.uk/winter where you can also download a PDF version.

New learning programme for Bliss volunteers Bliss volunteers providing information and support to families on the neonatal unit, helpline, via email and at family groups, will be given a brand new training programme to support their vital work.

Volunteers are invaluable in supporting families to be more involved in caring for

Bliss updates 31

their baby - something we know from research provides better outcomes for babies.* A new programme has already begun with helpline volunteers, which includes self-guided learning at home, a two day workshop, and practise emails and calls.

It helps volunteers become familiar with the role, to understand the emotions callers might have, and helps to develop listening and questioning skills to provide inclusive support. A schedule of training dates for all volunteers will be released in early 2017.

If you could support families with a premature or sick baby look out for volunteering opportunities at bliss.org.uk/volunteer For references please email little@bliss.org.uk

In your area Next neonatal units to receive Bliss award for excellent care

Neonatal units in Portsmouth and Surrey are set to be awarded for their high quality, family-centred care for babies.

The units will follow Princess Anne Hospital in Southampton which was the first to be accredited through the Bliss baby charter (read about this on p24-25).

The Bliss baby charter helps units assess the quality of the care they provide and make improvements with the help of families and Bliss.

Bliss plans to work with all units in the UK as part of the baby charter. We will support them to give consistent, high quality care for all premature and sick babies by providing them with the means to evaluate their approach to familycentered-care.

Parents in Leeds increase their confidence in caring for their babies A pilot programme which allows parents to be in charge of basic medication, temperature charting, feeding their baby and presenting on ward rounds, has so far increased parental confidence and reduced the length of baby’s hospital stays.

The family integrated care pilot at St James’ Hospital in Leeds was developed with Bliss’ help in 2015 and is the first of its kind in the UK. Initial findings are very positive, with increased breastfeeding rates and parents feeling more confident in caring for their babies in hospital. Bliss will be holding a study day in November to share these results, and other good practice, with health professionals.

Does your neonatal nurse or doctor know about Bliss training days? They can find out more at bliss.org.uk/training-and-development

32

Bliss updates

In detail Bliss baby reports: a year of hard hitting research and change This year Bliss published a series of reports focusing on how well neonatal services are able to meet national standards for safe, high quality care for babies.

October 2015 - Bliss baby report: hanging in the balance (England) Our first report investigated neonatal services in England. We found a system under-pressure, lacking resources and chronically short on staff. Without urgent intervention, we knew babies’ safety would be at risk.

Since we published our report the government has committed to a neonatal transformation programme to review services and almost 3,800 people signed our open letter to NHS England CEO Simon Stevens, calling for neonatal services to be properly funded so all units can meet national standards.

April 2016 – Transfers of premature and sick babies (UK) Neonatal transport teams ensure babies receive the care they need, as close to home as possible. However, many teams lack the resources they need and some were unable to operate 24 hours a day.

Bliss’ report revealed hidden gaps which need to be addressed, and put neonatal transport firmly on the political agenda.

July 2016 – Bliss baby report: time for change (Wales) Welsh neonatal services revealed a disappointing lack of progress in recent years. More nurses and medical staff were needed and there was a lack of facilities to keep families together.

But within days of our report being released we had excellent news – the First Minister for Wales committed to neonatal units being properly staffed by 2021.

September 2016 - Families kept apart: barriers to parents’ involvement in their baby’s hospital care (England) This most recent report reveals widespread barriers to parents in being involved in their baby’s care while they are in hospital. This is due to a lack of facilities for families such as overnight accommodation and basic food preparation areas, together with expensive meal costs and parking charges.

We are campaigning for better support for parents so they can be active carers for their baby. It is vital for ensuring the best possible outcomes for babies.

But this is only the start. We will release reports for Scotland and Northern Ireland and to complete the series over the next year. With these reports we will continue to push for all neonatal services across the UK to meet national standards for the safest and highest quality care for premature and sick babies.

Help give babies the best possible care by campaigning with Bliss. Join us at bliss.org.uk/campaign-with-us

Bliss updates 33

How parent’s experiences are being used to teach health professionals

babies were born premature to create a resource for nurses. Bliss is supporting this by connecting Julia with parents who are willing to share their story.

Once Julia has collated the stories she will ask parents to identify the key points of learning they think are most important for health professionals. Finally she will see how well the resource has helped health professionals to understand what parents go through while their baby is on a unit, and improve the quality of care they receive.

Bliss understands how difficult it can be to have a baby who is born premature or sick in neonatal care. Parents can sometimes feel like staff on the unit might not always understand how they feel. Bliss is working with Julia Petty, a Senior Lecturer in children’s nursing at the University of Hertfordshire, who is researching whether stories from parents can be used to teach nurses about the importance of family-centred care*.

Usually training for neonatal nurses has focused on the medical advances and technical skills needed to care for babies. While these skills are incredibly vital it is also important for nursing care to focus on aspects such as dignity, empathy, compassion and respect.

Evidence has shown that staff have a better understanding of the experience of patients when their stories are shared and this helps them to provide more empathetic care.

With this in mind Julia has set up a study collecting stories from parents whose

Bliss believes that having a strong base of evidence when treating babies who are born premature or sick is vital. We also know how important it is for research to include the voices and experiences of parents.

We receive many requests from researchers who would like to work with parents. If you think you can help please email research@bliss.org.uk for further information. *Family-centred care is the acknowledgment that a family is the most constant influence on a baby’s development and that they should be central to their baby’s care (read more on p12-13).

As little as £65 could help Bliss enable life-changing research to improve the care, treatment and quality of life for premature and sick babies.

Making a difference award Lisa Leppard is from Princess Anne Hospital in Southampton, the first unit in the UK to be accredited by Bliss baby charter for its exceptional care.

Special dedication to families award Georgia Melbourne supports families at two neonatal units in her local area, after her daughter was born at 28 weeks. She also fundraises and has shared her story for Bliss.

Championing babies’ voices award Emma Gooding-Brown represents parents on the neonatal network for Yorkshire and Humber after giving birth to her son at 24 weeks.

Making a difference – Fundholder award Lucyanne Harris was awarded for raising over £12,000 in memory of her son Freddie. Read her story on p23.

A BIG thank you!

Bliss’ work is only possible thanks to the amazing people who give their time, energy and money to helping babies born premature or sick. To say thank you to just some of these fantastic supporters, we held our annual thank you awards ceremony at the Stratford-Upon-Avon Home and Garden Show in the summer. Here are our winners.

Advancing care through research award Professor Lelia Duley, Director of the Nottingham Clinical Trials Unit at the University of Nottingham, led pioneering research on the care of premature babies at birth. Her research was done in partnership with Bliss and looked at the most beneficial time to clamp the baby’s umbilical cord.

Special dedication to families award Catherine Miles started volunteering for Bliss three years ago, after her son was born at 26 weeks. She volunteers in a family group, on the neonatal unit and has organised numerous fundraising events.

Events fundraiser award Marie Bailey’s daughter Lily was born at 28 weeks in 2006. She has fundraised over £60,000 since 2008, raising over £15,000 for Bliss in the last year alone.

Corporate partner award Yvonne McCormack had two premature babies and has since raised over £16,500 for Bliss with the help of her colleagues at AIG.

Lifetime support award Dianne Bennett had three premature babies and unfortunately lost her son Sam. Dianne served as a Bliss Trustee from 1984 until 2006 and still fundraises and runs a thriving knitting scheme with 227 members.

Give premature and sick babies the best future with a monthly donation to Bliss Right now Bliss is doing exciting and inspiring work to improve the lives of premature and sick babies. But it’s only possible to build on our work enabling research, campaigning for vital change and supporting families, with the help of reliable, monthly donations from people like you.

Without the generosity of our supporters we would not be able to plan for the future and invest in services and research that will have a huge, long term impact on babies.

A monthly donation is a fantastic way to make a difference to premature and sick babies, and to really invest in their future.

Join the Bliss family today by setting up a monthly donation. You will receive Little Bliss magazine twice a year and regular updates to tell you how your donation is making a difference.

Call Bliss now on 020 7378 5740 or visit bliss.org.uk/donate

If you already support Bliss with a regular gift – thank you!

We hope Little Bliss is showing you how your donation is being put to good use.

Every penny given is spent responsibly to help improve the lives of vulnerable babies across the UK.

To give a one off donation to support Bliss’ work Text BABY36 £10, £5 or £3 to 70070

Bliss is here for you Bliss exists to ensure that every baby born premature or sick in the UK has the best chance of survival and quality of life.

Information and support

Community

Online

Netmums forum

Find information about premature or sick babies, neonatal care and much more at bliss.org.uk

Speak to other families and share advice online at the Bliss/Netmums forum bliss.org.uk/Netmums-forum

Helpline

Get involved

For information or emotional support call or email the Bliss helpline to speak to a trained volunteer in confidence.

0808 801 0322 hello@bliss.org.uk

Help premature and sick babies by raising money, campaigning or volunteering for Bliss bliss.org.uk/get-involved

Local support

Little Bliss

Share experiences and find local support at a Bliss family group. Visit bliss.org.uk for support in your area.

To receive Little Bliss twice a year visit bliss.org.uk/little-bliss

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