Little Bliss Spring/Summer 2016

Little Bliss

Spring/Summer 2016

10

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

years

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

We champion the right for every baby to receive the best care by empowering families, influencing policy and practice, and enabling life-changing research.

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 In every issue On the cover Little Bliss celebrates ten years

4 Bliss updates Bliss gives £17,000 to transform neonatal units

22 Look at them now Grace celebrates her tenth birthday after her tough start in life

Together with readers and babies We are hugely excited to celebrate ten years of Little Bliss magazine. Little Bliss remains the only magazine of its kind dedicated to sharing the stories of premature and sick babies and their families, and it’s these stories that make it unique. That is why we chose to mark the tenth anniversary issue by sharing the front page with our readers and their babies.

On the cover and on p20-21 you will find photographs of premature and sick babies on the neonatal unit and now. We are thrilled to be celebrating their growth and progress alongside Little Bliss’, and if you’re currently on the neonatal unit we hope that their stories will remind you that you are not alone.

I am also delighted to share with you our ambitious and exciting plans for the next three years. Find out how Bliss will improve the lives of babies born premature or sick on p.6-7.

Features 8

Special feature Heather gave birth at 23 weeks: “We had no one to talk to, to understand what we were going through”

12 Real life What happened when full term baby Reuben was deprived of oxygen at birth

18 Q&A Nurse Carol tells Little Bliss about her ten years working in neonatal care

24 Real life Georgia, at 18 years old: “I was convinced they were judging me for being a young mum”

30 Parent-to-parent advice NEW Parents share their tips for supporting your partner on the neonatal unit

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

The Little Bliss team Editor: Gemma Ellis Design: Joana Águas

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

4 Bliss updates

In brief Bliss grants transform neonatal units Two hospitals have been awarded grants from Bliss to help improve the facilities for families on their neonatal units.

Conquest Hospital, East Sussex, received £7,000 to refurbish the kitchen in the Special Care Baby Unit, which was not fit for purpose. Families had limited access to storage and there was no space to prepare meals or for families to sit and eat. The new kitchen/breakfast bar allows families to spend longer on the unit and reduce their costs by preparing meals on site.

At North Devon District Hospital £10,000 bought breast pumps to support parents who want to express milk, as well as travel pumps and carry cases to allow mums to borrow pumps and express milk at home. The units also bought a selection of baby soothers and toys for siblings to play with while they are visiting.

For more information about the Bliss Baby Charter Grant Fund visit bliss.org.uk/ bliss-baby-charter-grants-fund

Number of parents getting support online doubles in last year More than double the number of parents are accessing support online through the Bliss messageboard following the charity’s partnership with Netmums in April 2015.

Netmums is the UK’s largest parenting website with over eight million users each month. It has hosted the Bliss messageboard on the Premature and SCBU forum for the last year, meaning parents have access to a private messaging service, local and national support through Netmums, as well as expert advice from Bliss.

To visit the forum, go to bliss.org.uk/messageboard

Supporting £10 million of research We are proud to say that Bliss is now supporting over £10 million worth of neonatal research. This includes looking at how to reduce infections in premature and sick babies, reducing painful examinations and improving outcomes for babies by involving parents more in their care.

Bliss previously provided £7.5 million in support for research but is now supporting even more as part of new plans and projects to improve the lives of babies for generations to come. Bliss will work with families and health professionals to fund research in areas that need development that families feel are important. We will also continue to help families take part in research and make sure their thoughts

Bliss updates 5

and experiences are at the centre of new studies.

To support neonatal research and help improve the care of babies please consider donating to Bliss at bliss.org.uk/donate

In your area Just some of the highlights from Bliss’ activity in your region Midlands We are pleased to say that of the 21 neonatal units across the West Midlands, the South West and Staffordshire, 18 have a Bliss volunteer or family group. These volunteers provide face-to-face support to parents who have had a baby on the unit, while family groups provide peer support for parents once their baby has been discharged.

Bliss is setting up new family groups in Telford, Powys and Worcester and is recruiting volunteers at neonatal units in Birmingham, Wolverhampton, Dudley, Walsall and Bristol.

If you could help families in your area please visit bliss.org.uk/be-a-blisschampion

Yorkshire Bliss is working with St James’s Hospital in Leeds to put parents at the heart of their baby’s care through a parent training programme. This Family Integrated Care pilot is the first of its kind in the UK, but has been successful in Canada in helping to reduce stress in parents and increase breastfeeding, as well as leading to quicker discharge for babies.

Bliss helped to put together and deliver training for parents which empowers them to feel confident in basic medication, temperature charting, feeding and presenting their baby on ward rounds.

So far results have been overwhelmingly positive, with parents feeling more confident and prepared for when their babies go home.

The pilot will be evaluated this year to assess its benefits to babies and their families.

Scotland Support for families is increasing in Scotland as Bliss recruits more volunteers in neonatal units. New Bliss volunteers are available at units in Fife, Dundee, Wishaw and Glasgow. There are now also family groups in Dundee, Glasgow and Edinburgh. Bliss hopes to recruit volunteers and provide services in Aberdeen and the north of Scotland soon.

If you could provide support for families in Scotland visit bliss.org.uk/volunteer

6

Bliss updates

In detail Helping every baby born premature or sick Bliss launched an ambitious new three-year plan to give every premature or sick baby in the UK the best chance of survival and quality of life.

When Bliss was founded in 1979 our aim was to give every baby an equal start in life by making sure care was available for those who needed it. Today, this aim is still at the heart of Bliss, but our vision for the future is more ambitious than ever before.

Over the next three years our goal is for every single baby born needing neonatal care and their family to benefit from our work. At the moment, Bliss reaches about two thirds of the babies admitted to neonatal care, but we want to be there for all of them.

This means we will be focusing on making sure parents get the right information as early into their baby’s hospital journey as possible, and that they get emotional support if they need it. Bliss volunteers have been supporting families in hospital since 1983 and last year alone helped more than 6,200 parents, but we know we can do much more.

We also know that by working hand-in-hand with neonatal units we can improve standards of care for babies, and we will support more units to assess the quality of the care they are giving and to make improvements.

“Bliss was started by parents and I am immensely proud that nearly 40 years later we are still being led by what parents tell us is best for their babies” As well as support for babies and families, neonatal research will be a priority for Bliss. We will help parents to be involved in research projects and provide funding for projects that tangibly improve the lives of babies.

As the leading UK charity for babies born premature or sick, it is our responsibility to ensure babies’ voices are at the heart of decision-making. That is why we will continue our focus on campaigning work to ensure neonatal units are resourced, staffed and supported and that babies’ interests are always put first.

Bliss updates 7

Where Bliss began In 1979, The Daily Telegraph ran a story on the lack of resources for special and intensive care baby units in the UK. It said that no unit had all the tools needed for the safe treatment of all babies in their care.

A week later a letter appeared in the paper from Allan Chilvers, asking readers to write to him if they were interested in setting up a society to tackle the problem.

Chief Executive Caroline Davey said: “We developed these plans with the help of more than 3,100 parents, professionals and supporters, and I want to say a heartfelt thank you to those who gave their time to help with our strategy survey.

“Bliss is a charity that was started by parents and I am immensely proud that nearly 40 years later we are still being led by what parents tell us is best for their premature or sick babies.

“I am incredibly excited for what the next three years will bring: we will support more neonatal research than ever before, work more closely with health professionals, and – as our volunteer network expands – we hope to see more families empowered with the information they need to feel confident and fully involved in all aspect of their baby’s care.

With this approach we aim to give every baby born premature or sick the best possible chance of survival and quality of life.”

For more details of Bliss’ new strategy visit bliss.org.uk/our-strategy

A group met and later established Baby Life Support Systems, BLISS. The aims of the charity were to train medical and nursing staff, provide medical equipment and undertake research.

Within five years Bliss had raised more than £750,000 for medical equipment, appointed three research fellows and taken our first campaign to Downing Street.

8 Special feature

Adam, Heather and Willow

“We had no one to talk to, to understand what we were going through” Having a baby in neonatal care can be incredibly stressful and emotional for families, and having access to support is essential. Unfortunately, as shown in Bliss’ recent report, many parents do not have access to vital support services, and two people who suffered as a result of this were Heather Berry and her husband Adam.

“We had to watch her go through so many painful procedures, it was awful.

We had to see her be resuscitated and I cannot even begin to describe the emotions that ran through me each time that happened,” says Heather.

During their time on the unit, Willow had to be transferred between hospitals When Heather gave birth to Willow at 23 on three different occasions. Heather describes these experiences as terrifying: weeks in January 2014 she was told the “We weren’t allowed to travel in the baby may not survive. Weighing just 1lb ambulance with her, we had to follow in 7oz, Willow was extremely ill but thanks the car. It was horrible as we didn’t know to the care she received she is now progressing at home. After four months in what was going on in the ambulance hospital Heather and Adam were greatly or whether it would end positively. We just had to hope that the sirens didn’t affected bytheir experience. suddenly come on.”

Special feature 9

“We had to watch her go through so many painful procedures, it was awful”

no one to talk to, no one to understand what we were going through and it was very isolating and upsetting, which in turn made parenting very difficult.

Having to watch their daughter spend time on the neonatal unit had a huge impact on Heather and Adam. Heather suffered from post-traumatic stress disorder and Adam had several months off work due to stress. Heather says: “As a parent of a premature baby, you long to hold your baby in your arms, to comfort them, feed them, and tell them it will all be okay. You want to do all the things you dreamed of: walk them in the pram, read them bedtime stories in their new nursery.

“I did get support from the some of the nurses, they would chat to me while I was expressing, and they genuinely cared for our welfare. One nurse would bring me pictures of Willow when I was too ill to see her (I was really ill after the birth and was not allowed to see Willow for nine days due to the infection risks), she made little books showing Willow’s development, took her finger prints for me, and also brought me Willow’s blankets so that I could smell her scent.

“Instead you have to neurotically scrub and wash your hands before you can touch them, you have to watch them through a plastic incubator, and cuddles become a military operation in which you find yourself covered in wires and staring at the machines more than the baby, terrified that something will go wrong.”

Heather and Adam were desperately in need of support, but she says: “We had

“The Bliss nurse would also come and chat with us and try to help us with practical things like finances, we had to try and re-mortgage out house due to the financial implications of Willow being in hospital, and she gave us lots of information to help.

Willow, five days old

“The downfall was that there was no formal mental health support or

Willow, six years old

10

Special feature

counselling available for the parents.

I was really struggling with my emotions, having terrible flashbacks. I had no opportunity to debrief on the traumatic birth or the aftermath. It wasn’t until Willow was back out of hospital and we were back home that I was able to see my GP and get some help.”

Heather, Adam and Willow are now at home and they recently celebrated Willow’s second birthday. She had a tough journey through the neonatal unit Heather said: “She went through so much and I honestly don’t know how she did it.”

Willow has some ongoing health issues including with her physical and cognitive development. But Heather said: “Her progress is staggering and she is now stronger than ever.”

If you have ever felt like Heather and Adam you can call the Bliss helpline to speak to someone in confidence on 0808 801 0322 or email hello@bliss.org.uk

Willow, five days old

Help Bliss campaign for better support for families According to the Bliss baby report 2015: hanging on the balance, units across the UK are not able to provide psychological support for families. Despite guidelines which state that all parents should have access to a trained counsellor on the unit, Bliss found that at 41 per cent of units parents had no access to a trained mental health worker.

At 30 per cent of units parents had no access to psychological support at all. This means cases like Heather and Adam’s are not the exception and thousands of parents are going without the support that they need.

Bliss published the report to highlight these issues and urge the government to allocate more funding for neonatal care. You can join our campaign for improvements in care and read the Bliss baby report at bliss.org.uk/babyreport

Willow, 19 months old

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AFTER

12

Real life

Lydia with Reuben soon after birth

When a full term pregnancy goes wrong Lydia Ismail’s pregnancy was Reuben was in distress and had to be straightforward, but after she went into born via emergency caesarean section. labour naturally at 41 weeks things didn’t go to plan.

He wasn’t breathing when he was born and had to be resuscitated. His blood Lydia and her husband Mehmet were tests showed increased acidity and he delighted to learn they were going to be had low blood pressure as well as liver parents. They had planned a hypnobirth and kidney damage. He also had a and were looking forward to the things they could do once the baby had arrived, seizure shortly after being born and a collapsed lung. but when Lydia went into labour at 41 weeks, things started to go wrong: “After sleeping for the early part of my labour I woke up panicked and in pain; I hadn’t felt my son move since the previous evening.”

They went to the hospital and things started to move very quickly, but not in the direction they were hoping. Their son

Doctors concluded that Reuben had suffered from Hypoxic ischemic encephalopathy (HIE), a brain injury that comes as a result of lack of oxygen. He required a treatment called therapeutic hypothermia (also known as cooling) but would need to be transferred to an intensive care unit.

Real life

“I hadn’t seen Reuben up until this point and was not really aware of what was going on around me. It was incredibly hard to take in what was happening to my little baby, who I hadn’t even held yet.

“I finally got to see him on his way to the ambulance, only to be told that he might not survive the journey to the intensive care unit. Luckily he arrived later that day, and my husband and I followed the next morning. It was the longest and most painful journey of my life, but I was going to see my baby and nothing could make me happier.”

Reuben needed to be cooled for 72 hours. Lydia and Mehmet were still not able to hold or touch him, but could sit by his cot and talk to him: “We spent the next three days being around our little boy and watching him grow stronger and fight on.”

During this time, Lydia was given Bliss information booklets including one on HIE: “Looking back now, the booklet was

13

a lifeline as it helped me understand what had happened and what might happen to him next. It gave me a focus to learn about what Reuben was going through and how I could interact with him during our hospital stay.”

“Bliss’ booklet was a lifeline. It helped me to understand what had happened and what might happen to Reuben next” After 72 hours of cooling, Lydia finally got to hold her son at five days old. “The moment they finally placed Reuben in my arms was a mixture of fear, because he still had wires and tubes in him, ultimate happiness and great sadness, because I hadn’t been able to keep him safe and give him the start in life I had imagined.

Reuben born at 41 weeks

14

Real life

“I was suddenly aware of the emptiness I had felt since his birth. As painful as it was, the joy I felt at having Reuben in my arms eclipsed all those other feelings.

I didn’t want to let go of him.”

“New mums: you are not alone and there are lots of us here with you. There is always a rainbow after the storm”

“Now, watching my son grow up to be a happy little boy, I want to say to any new mums starting their journey into motherhood in a neonatal unit: you are not alone and there are lots of us here with you. There is always a rainbow after the storm.”

Was your baby born at term but needed to spend time on a neonatal unit?

Tell Little Bliss your story and help to support other families.

Email little@bliss.org.uk

Reuben finished his treatment in the following days and was eventually able to go home. “Once home I went through a range of emotions, mostly loneliness, so I turned back to Bliss to try and find others who had been through the same journey as us. While doing this I was able to answer more questions going around in my head.

Lydia and baby Reuben

Reuben today

Real life

15

Spotlight on HIE Hypoxic-ischaemic encephalopathy (HIE) is a lack of oxygen and/or blood flow getting to a baby from the placenta during birth. Sometimes this is also referred to as asphyxia or birth asphyxia.

HIE can affect a baby’s organs, particularly the brain, and they can display symptoms such as being hyper-alert, irritable, eye rolling, abnormal movements (fits), or a reduced level of awareness.

hypothermia, or cooling. This involves lowering the baby’s temperature to 33.5 degrees celsius from the usual 37 degrees.

Cooling a baby for 72 hours can limit the extent of brain injury and improve their long term health.

What about the future?

Once a baby has been discharged from hospital, follow up appointments will take place regularly to monitor the baby and a developmental assessment will take place between 18 months and two years.

It’s not always possible to know what causes HIE, which can be mild, moderate or severe. Many babies will recover without any lasting effects while others may have disabilities, and in some cases a baby may not survive.

Treatment options Most babies with mild HIE recover quickly and will be monitored to ensure that they do not need further treatment. Babies with moderate to severe HIE will be referred to the neonatal intensive care unit (NICU) to receive a treatment known as mild

Other factsheets Bliss provides information on a variety of conditions, including: • • • • • •

Reflux Neonatal jaundice Necrotising Enterocolitis Retinopathy of Prematurity (ROP) Transfers in utero Inguinal hernia

• • • • •

Congenital diaphragmatic hernia Pulmonary surfactant Hydrocephalus Gastroschisis Oesophageal atresia and tracheo-oesophageal fistula

Find these and more at bliss.org.uk/information-for-parents

16

Ten years of neonatal care

A decade of developments We look back on how Bliss’ campaigns, research and work to support health professionals have led to some of the most significant improvements in care for babies born premature or sick in the last ten years.

Bliss baby report Scotland

EPIcure 1 and 2 Bliss helped to fund the world’s longest running study into prematurity, following babies born under 26 weeks.

Baby resuscitation Together with NHS Ayrshire and Arran, Bliss created a video to teach parents what to do if their baby stops breathing.

Thanks to the study, we now know a lot about the long-term impact of prematurity.

1995 and 2006

The Scottish government invested in nurse training and funding to develop neonatal networks following Bliss’ report.

2006

SCAMP study This Bliss-funded study found a new way of feeding premature babies to help their brains develop better.

2008

2009

2010

Toolkit for High Quality Neonatal Services Thanks to Bliss’ campaigning and high profile baby reports, new guidelines for neonatal units in England (developed by an NHS team and Bliss) set out how consistent, high quality care can make a life-long difference to babies.

Find out more at bliss.org.uk/our-work

Ten years of neonatal care

17

Starting school

Financial support: It’s not a game

Prematurity became recognised as a reason for a child to delay starting reception if they were born in the summer months, following Bliss’ campaign.

Bliss’ campaign to reduce costs to families while their baby is in hospital saw the government advising hospitals to reduce car parking charges and agree a review of parental leave.

This means it’s possible for early babies to start school in the year they would have been in, had they been born at term.

The Bliss Family Friendly Accreditation Scheme Bliss launched a scheme to recognise and reward neonatal units providing family-centered care.

2012

2014

2015

2016

One specialised service Bliss successfully campaigned for all three levels of neonatal care to be planned as one, rather than separately.

Babies are now more likely be treated in the right place at the right time and care is more consistent across units.

Bliss baby report 2015: hanging in the balance

Training Bliss, and developmental care specialist Inga Warren, provided training for health professionals to help them support parents to be involved in every aspect of their baby’s care.

This approach led to less stress for babies, quicker discharge and give parents more confidence.

England

Bliss baby report Bliss’ ongoing campaign calls for the government to invest more money in services for premature and sick babies.

18

Q&A Photo credit: Portsmouth Hospitals NHS Trust.

Carol supporting parents on the unit

Ten years working in neonatal care Carol Buxton is the Family Support and Infant Feeding Specialist in the Neonatal Intensive Care Unit at Queen Alexandra Hospital, Portsmouth. Having worked as a neonatal nurse for ten years, Carol has seen how changes in care have had an impact on babies and their families.

Q Tell me about your neonatal unit.

A We are a level three unit with 27 cots (looking to increase to 31 this year). We care for babies from 23 weeks’ gestation through to babies born poorly at term.

Q What is your role?

A I support families and enable them to assess their baby’s needs and understand their cues. I also work to facilitate and empower staff, so they can support parents and their families to give their babies the best long-term outcome possible.

Q In the last ten years, what changes have you seen in medical care?

A Huge medical advances mean we don’t ventilate babies for as long as we used to.

This has reduced chronic lung disease and the length of hospital stays, and babies are often discharged before their due date.

Better antenatal care means potential problems are being identified earlier and babies are more often born in units offering the appropriate level of care for their needs, improving outcomes. Community neonatal support is more available, enabling families to have their baby at home with additional oxygen if required.

Q Has support for families changed?

A Yes, units are more aware of the importance of making sure families are central to their baby’s care. Parents are not just onlookers – their presence, touch,

Q&A

19

voice and smell are an important part of everyday care. Ten years ago, parents would tell me their baby felt like the unit’s baby, but we now support families to care for their baby.

of one-to-one nursing care for all intensive care babies. But I love my job, and the knowledge that l can (and do) make a difference. It is also wonderful to have the acknowledgment that my role is important.

Q How have charities supported these

Q What would you like to see in the next

improvements in care?

A Charities such as Bliss have been at the forefront of these improvements.

The Bliss Family Friendly Accreditation Scheme (BFFAS)* has been a powerful tool in pushing forward improvements in care.

Bliss has a strong presence on neonatal units, its support in achieving gold standards such as one-to-one nursing care for all intensive care babies is invaluable. The information provided in the Bliss booklets is also really helpful for parents to have.

ten years?

A I’d like to see more availability for parents to have longer stays in an area close to their baby, as this would help establish breastfeeding as well as being a positive experience for the whole family.

I would also like to see more transitional care units (this is when a baby does not need such intensive care and therefore mother and baby are able to stay together).

Q How has your role changed in the last

Q What are the main challenges in your role and what do you love the most?

A Staffing is an issue across all neonatal units, particularly in achieving the standard

Photo credit: Portsmouth Hospitals NHS Trust.

ten years?

A The role I am in now gives me the time to support staff and make sure they are able to offer the best care to families. I am also able to spend time with parents and help them through their neonatal journey. This type of care has been around in one form or another for the last ten years, but there hasn’t always been someone in post. Now, my unit and lots of others recognise the importance of having someone dedicated to supporting families in this way. It’s a huge step forward.

*BFFAS recognises and rewards neonatal units caring for premature and sick babies, where they deliver consistent, high quality, family-centred care. This is an approach which places parents at the centre of their baby’s care.

20 Look at them now

“Our amazing Grace” Every issue we follow the amazing, inspiring and sometimes miraculous journey of a premature or sick baby. In this issue we meet Grace Allcott, who was born at 26 weeks.

Birth Grace and Luke Allcott were born at 26 weeks at Northampton General Hospital in 2006, weighing just over 2lb each.

36 hours

“To visit Luke and Grace every day meant a 100 mile round trip. We were terrified, confused and exhausted”

Due to their early arrival they both experienced complications. In her first few hours Grace suffered bleeds on her lungs and doctors said she may not survive.

8 weeks 1 week Parents Catherine and Nigel were finally able to hold Grace when she was one week old, but didn’t get to hold Luke until he was three weeks old.

1 week

Grace began to get stronger, was taken off her ventilator and began taking bottles of breast milk at 34 weeks’ gestation.

*Necrotising enterocolitis (NEC) is a serious illness where tissues in the intestine become inflamed and begin to die.

Look at them now

3 months Luke contracted NEC* and was moved to a different hospital.

Grace and Luke were cared for in different units until Luke sadly died three and a half months later.

4 months Grace came home the day after Luke’s funeral. Catherine says: “We were numb. It was the loneliest time of my life. Thankfully, our family were great and Grace was doing well.”

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‘’We are so proud of Grace and everything she’s achieved since surviving her traumatic birth. She lives every day to the full. With an outlook like that, she’s bound to go far’’ Grace’s mum, Catherine Allcott

3 years 1 year On what would have been Luke’s first birthday the family raised £4,500 as part of Luke’s Precious Star Fund and held a cream tea for Grace.

Today

4 years In 2009 Grace became a big sister to Matthew. The pair are inseparable, even now.

Grace is happy, healthy and has no lasting effects from her prematurity. She’s a keen swimmer, loves animals and drama and does a huge amount to support Bliss in Luke’s memory.

Catherine says: “Seeing Grace settling in at school was amazing.

I cried when she won a reading award. I couldn’t make her teacher understand that, at one time, we didn’t know if she’d ever talk or walk.”

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

Alieu, 23 wks

Alieu, 1 yr

Annabella, 33 wks

Annabella, 4 1/2yrs

Arabella, 25+5 wks

Arabella, 2 yrs Beth and Oliver, 27 wks, 10 1/2 and 8 1/2 yrs

Look at them now Bliss is thrilled to celebrate ten years of Little Bliss and share this milestone with readers across the UK. Thank you to all those families who sent in photos of their babies for our special tenth anniversary Look at them now.

Ethan, 29+1 wk

Ethan, 5 yrs

George, 34+6 wks

George, 1 yr

Harry, 25+3 wks

Harry, 1yr

Heidi, 27+2 wks

Heidi and Elsie, 7 and 4 yrs

Elsie, 34+2 wks

Maisy, 25 wks and 3 yrs

Isabelle, 34+6 wks

Isabelle, 10 mths

Jacob, 31 wks

Jacob, 5 mths

Jake, 28 wks

Jake, 2 yrs

Joshua, 27 wks

Joshua, 15 mths

Liberty, 25+5 wks

Liberty, 2 yrs

Lily, 28 wks

Lily, 1 yr

Maddison, 27 wks

Maddison, 8 mths

Aubree, 30 wks

Aubree, 7 mths

Austin, 32+5 wks

Austin, 17 mths

Charlie, 32 wks

Charlie, 10 yrs

Charlotte, 27+4 wks

Charlotte, 5 yrs

Daisy, 35 wks

Daisy, 5 mths

David, 31 wks

David, 2 1/2yrs

Harvey, 26 wks

Harvey, 7 yr

Hazel, 28 wks

Hazel, 3 yrs

Lulu, 27 wks and 10 yrs

Indie, 25 wks and 10 yrs

Jack, 30+2 wks

Jack, 16 mths

Jack, 27 wks

Jack, 11 yrs

Jack, 28 wks

Jack, 3 yrs

Katelynn, 31 wks

Katelynn, 3 yrs

Kimberley, 31 wks

Kimberley, 3 yrs

Kwame, 23 wks

Kwame, 9 yrs

Matilda, 27 wks

Matilda, 10 yrs

Max, 31 wks

Max, 3 yrs

Sayyeda, 33 wks

Sayyeda, 22 yrs

24 Special feature

Shortly after birth

Empowered by our neonatal journey Ten years after his early arrival at 23 weeks’ gestation, Kwame Myers is an energetic and thriving little boy. Looking back on his journey through neonatal care and the years of hospital visits that followed, his mum Hyacinth says the experience changed their lives in unpredictable but fantastic ways.

“Kwame is like a little explorer,” Hyacinth says. “He has a real zest for life and gets excited about lots of things. He likes afterschool clubs and although it can be quite draining, I try and give him the opportunity to explore whatever it is he wants to.”

It would have been hard to believe that Kwame would grow up to be such a happy and spirited boy when he was born at 23 weeks’ gestation in 2006. At that time Kwame and his twin brother Shaka were

in the care of doctors and nurses in the neonatal intensive care unit at University College Hospital, London.

Hyacinth had gone into hospital with some pain and bleeding when an assessment revealed she was in labour and would give birth at any minute.

Both babies battled infections but Shaka sadly died after 23 days in hospital.

“Nothing can ever prepare a parent for the news but the weekend that followed was quite beautiful. The nurses let me stay with him and moved his brother in for that day so the family and friends could come and say their goodbyes,” says Hyacinth.

At seven weeks old Kwame was transferred to Great Ormond Street Hospital (GOSH)

Special feature 25

for surgery on his heart. “It was heart wrenching watching him being put into a transfer incubator and taken away by ambulance while I followed on the bus with my older son Okera.

“Some sleepless nights followed, especially as he was so small and fragile. The fact that I lost his brother weeks before was even more reason to worry, as well as going to a new hospital where they didn’t know him.

Fortunately the staff at GOSH were fantastic.”

In spite of spending the first six and a half months of his life in hospital, Kwame is doing brilliantly today. “He has a few learning challenges but overall he’s doing really well. He recently achieved a gold award with St John Ambulance and he’s learning to do first aid because he loves ambulances and wants to become a paramedic.”

Hyacinth with her sons Okera and baby Kwame two months old

“When I go back to the unit it’s like it was yesterday. I remember everything, every sound, every machine. The journey was so intense, scary, awful and fantastic all rolled into one” Hyacinth believes spending time in hospital has inspired Kwame to want to go into medicine. The family go back to visit the neonatal unit several times a year to speak to the staff and families and Kwame enjoys going back and helping other families.

But returning to the unit always stirs strong memories in Hyacinth. “When I’m at home it feels like forever ago that Kwame was on the unit but when I go back in it’s like it was yesterday.

Kwame today, almost ten years old

26 Special feature

“I remember everything, every sound, every and brings me and my family joy, is looking machine. The journey was so intense, scary, back at the journals and photo diaries I awful and fantastic all rolled into one.” kept from the twins’ first moment of breath.

It is priceless. This year I’d like to do a joint Having had little contact with Kwame’s celebration for both of them to mark dad since he was born, Hyacinth raised their birthday.” her sons with the support of her mum. She spent a number of years concentrating If you have been affected by the issues on Kwame’s development and attending in this article and would like to speak to hospital check-ups to monitor his progress someone, call the Bliss helpline on but last year started a venture of her own.

0808 801 0322 “Being at home with Kwame meant I did a lot of holistic therapies on him: art, writing, and designing and making jewellery. It was quite hard going through everything on my own so it was really therapeutic for me. I then started my own business in May 2014 selling the things I make, and I began writing a programme for women about personal development – it’s been very empowering.”

As Kwame approaches his tenth birthday Hyacinth says she is feeling good about the progress he’s made. “What I am proud of,

Kwame and Okera

Open a Bliss Precious Star Fund Bliss Precious Star Funds are a special way to remember your baby.

You can create an online memorial page where friends and family can make donations, light candles and leave personal messages.

To find out more about Bliss Precious Star Funds: w bliss.org.uk/remember-your-loved-one e personalfunds@bliss.org.uk t 020 7378 5740 and ask for Dan

Kwame, four years old with Okera

Bliss little heroes The brand new superhero walk raising money for premature and sick babies.

Grab your mask, cape and trainers and walk for little heroes this summer.

Get your free organiser’s guide at bliss.org.uk/littleheroes

Paloma with Wynter Tatsu (above) and Bodhi Titan (left).

“My eldest son, Wynter Tatsu, was born at 28 weeks. It was a very difficult time with scary moments but Bliss was there with us throughout. I couldn’t have held my little hero’s hand this far without them” Paloma Thompson

t

020 7378 1122

e

events@bliss.org.uk

28 Real life

Scarlett shortly after birth

“I was convinced they were judging me for being a young mum” When she was 18 years old Georgia Melbourne found out she was three months pregnant. Then, just weeks after finding out she would soon be a mum she was told she needed an emergency caesarean section to save both her and her daughter’s life.

Georgia had very little time to get used to her pregnancy before her daughter, Scarlett, was born at 28 weeks’ gestation. She was suffering from severe pre-eclampsia (a condition which causes increased blood pressure) so Scarlett had to be delivered quickly.

so I felt very lonely. As much as friends and family tried to be there for me, I couldn’t help feeling like I was totally alone, with a critically ill baby.”

Scarlett weighed 2lb when she was born and had to be moved to a neonatal intensive care unit (NICU) for treatment.

“I was too ill to go with Scarlett, so I was separated from my daughter – that was the hardest part of the journey. I hadn’t had the chance to get used to being pregnant and now I had a baby that I didn’t remember being born, and that I couldn’t even see, let alone hold. Luckily, the staff were amazing “I was only 18 years old when Scarlett was and kept me informed by ringing me born and all of my friends had just moved away to start university. I was a single mum, several times a day with updates. After just

Real life 29

over a week, we were finally both back in the same hospital together.”

they were judging me for being a young mum.”

Scarlett was in hospital for 11 weeks in total, during which time she battled a brain bleed and an infection.

Georgia turned a corner when she found some information from Bliss in her unit and found support on the Bliss website by reading other parents’ stories.

“I hadn’t had the chance to get used to being pregnant and now I had a baby that I didn’t remember being born, and that I couldn’t even see, let alone hold” “It was the hardest time of my life. I spent so many nights sitting by the incubator crying, thinking about what I could have done better to stop everything that had happened. My tiny baby was managing to stay strong, but I couldn’t even get through the day without crying. I didn’t want the nurses to see me cry in case they thought I couldn’t cope – I was already convinced

Georgia and Scarlett’s first cuddle

“One day I saw a Bliss leaflet and it was like a light had suddenly been switched on and all of a sudden I wasn’t alone any more.

That evening, I went on to the Bliss website and spent half the night reading through stories from other parents and finding out information about the various terms I’d heard on the unit.

“After reading through everything on the website, I suddenly had the confidence to ask the doctors the questions I hadn’t been able to ask previously and to understand what was really happening. I started asking to hold Scarlett, rather than waiting for nurses to offer. I helped to tube feed her and I even gave Scarlett her first bath.”

Things got better for Georgia on the unit where she was able to be more involved

Scarlett, six days old

30 Real life

with Scarlett’s care, but she began to realise she was suffering from postnatal depression and was frightened to get the support she needed.

“One day I read a Bliss leaflet and it was like a light had suddenly been switched on. All of a sudden I wasn’t alone any more”

hospitals. She visits the units every week to talk to parents going through a similar situation to hers, and offers support if they need it.

“I’m so proud of how far Scarlett and I have come, and despite a difficult few years, I wouldn’t change any of it because it’s made us the people that we are today.”

Bliss has hundreds of volunteers in neonatal units across the UK. Visit bliss.org.uk/support-in-you-area to find your nearest volunteer or support group.

“I convinced myself that I wouldn’t be able to take Scarlett home if I told anyone how I was feeling, especially because I was so young, so I kept it hidden and struggled on. It wasn’t until a year later that I found a support group and I finally started to get some help. Realising that how I felt wasn’t normal gave me the confidence to go to the doctors and it really has changed the relationship between me and Scarlett.”

Scarlett is now a happy, healthy three-yearold and Georgia is a Bliss volunteer on the neonatal unit at Rotherham and Bassetlaw

Last year Bliss distributed more than 138,000 booklets to parents like Georgia, to help them feel more confident and informed.

Georgia in her role as a Bliss volunteer with Scarlett

bliss.org.uk/publications

10

things you can do for your baby

Ten things

7

Skin-to-skin contact

8

Comfort your baby during procedures

9

Ask your doctor or nurse explain things you don’t understand

Sometimes on the neonatal unit it can feel like the doctors and nurses are the ones looking after your baby, but there are lots of ways you can and should be involved in their care. Here are ten things you can do for your baby to make sure you’re not missing out on precious moments together.

1

Watch your baby This is how you get to know how they are feeling, so ask for chairs so you can sit close by.

2

3

Ask questions If you phone the unit ask detailed questions about your baby, such as whether they have slept well or eaten enough, so that you have a full picture of how they are.

4

Feed your baby

5

Ask to do daily cares

Touch your baby Your baby may find it soothing to grasp your finger or feel the gentle pressure of your hands resting on their body, their head, or cupping their feet.

6

Do the first bath Your baby’s first bath is a very special moment. Ask the nurses to plan it with you so you can do it with their support.

Skin-to-skin, often referred to as kangaroo care, means holding your baby close against your chest.

It has lots of benefits for babies and is a special activity for parents.

When your baby needs medical or nursing procedures ask how you can help to comfort them.

There really is no such thing as a silly question, especially when it’s about your baby. Don’t be afraid to ask your doctor or nurse to explain terms or procedures you don’t understand.

Even if your baby is still tube fed it should be possible for you to be involved with feeding from an early stage.

Activities such as cleaning your baby’s mouth and changing their nappy will be opportunities for you to get to know each other.

Policies vary from unit to unit but ask early on when you can be involved with activities like this.

31

10

Talk and sing Talk, sing or read to your baby. If they are in an incubator ask if one of the portholes can be opened so that they can hear you more easily.

Order a free copy of Bliss’ booklets, Look at me – I’m talking to you, about watching and understanding your baby, and Skin-to-skin, from bliss.org.uk/shop

32 Joshua’s journey – part three

Joshua’s journey: part three 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.

Day 64 The nurses said you did well with a bottle overnight. They’ve said that if all goes well you can come home in a couple of days.

We’re so excited!!

This is the third and final part of my blog to him, documenting his journey through neonatal care, starting in Bedford, where he was born, and travelling to Luton, where he was transferred to intensive care.

Day 65 The nurses rang this morning to tell us that you’d been sick and as a precaution they’ve moved you to the intensive care unit at Luton.

You’re now ventilated so we’ve gone from nearly being home to being back at Luton in one day. Not great.

Day 66 The doctors think you’ve got an infection but need to do some more tests to find out what it is. Your mum and I are worried sick, but you don’t seem all that fussed.

Day 63 Well that’s a nice surprise - when we came in this morning the nurses said we’re getting closer to taking you home. You had another bath today too. You’re still not happy about it but you love having your hair washed.

Day 68 The doctors suspect you might have meningitis and you’ve caught the flu, which is why you’ve been so unwell. You’re still on the ventilator and it’s the longest you’ve been on it since you were born.

Joshua’s journey – part three 33

Day 76 Mummy’s definitely rooming in with you tonight – you’re officially two days from going home. All the monitors were finally taken away again today.

Day 69 There was an emergency with another baby last night, so you didn’t get back to Bedford until today! All the nurses here seem as relieved and happy as we are to have you back.

Day 77 I’m joining mummy with rooming in tonight for hopefully your last night in hospital.

You’ve been weighed again at 4lbs 13oz and you passed your car seat test so it looks like there’s not much keeping you in hospital anymore. We’re still scared to turn off your apnoea monitor but everyone says it’s okay to turn it off.

Day 71 They’re starting to put your feeds back to how they were before you got the flu. You’ve got a little bit of oxygen on the tube again but it’s nothing really. The nurses are also mentioning the “H” word again, but we’re a bit apprehensive after last time.

Day 78 It finally happened! 78 days after you were born we got to take you home today. I can’t even begin to describe how happy we are!

A note from Jonny Before Josh was born we hadn’t even considered the possibility of him being born early. It was such a shock to us. Bliss helped us through our time in hospital. We hope by publishing Joshua’s story we can help people who are going through a similar situation.

Day 76

Read the first and second parts of Joshua’s journey at bliss.org.uk/little-bliss

34

Parent-to-parent advice

Parent-to-parent

Supporting your partner Being a parent of a premature or sick baby on the neonatal unit is an emotional rollercoaster.

Sometimes you may wonder what to do, how to feel and how to handle it all. In this issue, parents tell us what their partner did or could have done to help them feel supported.

Angie, daughter born at 23 weeks

Make an effort “My husband hates hospitals.

However, he pushed through the phobia and came each day to care for our daughter.

When I became too ill to be there he took the day off work and went to the unit in my place.”

Mums, Laura and Anna

Acknowledge the good times “Document your baby’s journey through photos and a diary so you can look back at how far they have come. It keeps you and your partner optimistic in the process.”

Parent-to-parent advice 35

Sarah K, daughter born full term but sick

Communicate “Talk to each other about anything and everything. Pay attention to your partner. If they are quiet, say ‘talk to me’ and allow them to feel what they need to feel.”

Mum, daughter born at 30 weeks

Mum, daughter born full term but sick

Acknowledge the good times “It’s important for both of you to find a positive and focus on small improvements such as weight gain or a reduction in oxygen requirements. It’s okay to feel happy and laugh at something funny (eg. nappy explosions!) Staying positive is key.”

Dad, daughter born at 27 weeks

Make an effort

Communicate

“I wish my husband would have text me during the day to check in on me and the baby when he was at work or made me a lunch when preparing his. I just needed some acknowledgement or a hug. These gestures would have helped immensely, both physically and emotionally.”

“Both parents are going to feel strong emotions that can be hard to handle, so it’s important to give each other the time to feel those emotions and not overanalyse each other’s words and reactions to different situations. Allow your partner to feel what they need to feel.”

We will be discussing feeding your premature or sick baby in the next issue of Little Bliss. Email your advice to little@bliss.org.uk or tweet us @blisscharity, with the hashtag #littlebliss

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Sarra’s story 37

Sarra and Callum, 13 months old

“Prematurity won’t define my little boy” When Sarra Hoy gave birth to her baby boy 11 weeks early she entered a world she never knew existed and which will stay with her forever. But as her son grows up and continues to thrive, she is determined not to let his prematurity impact on the rest of his life.

At 29 weeks’ gestation Sarra heard the terrifying words, “Oh this is not good.

This baby has to come out.”Her baby boy Callum had stopped growing some weeks before and needed to be delivered by emergency caesarean section, weighing 2lb 2oz.

“For quite a while afterwards, while still in a state of shock, I would find myself telling anyone who would listen that I’d had a premature baby. I told delivery men who

came with packages that my baby was in intensive care. I found myself telling a stranger in the supermarket about my little bean of a baby who was currently growing in an incubator rather than in me. Even now that my baby is home and (dare I say it)… thriving, I find it hard not to shout “I’VE HAD A PREMATURE BABY” at traffic wardens in the supermarket car park.”

Sarra says this is the mark of “premmie mum” and she is now an expert member of a club she never imagined joining. “I can now talk a good talk around an intensive care baby unit. I know all the different ways to store breast milk. I understand the loneliness of a breast pump at 3.00am and how devastating it is to try and trick your breasts into producing milk when your body

38 Sarra’s story

has barely realised it was pregnant, let alone that it has delivered a baby. I know about the intense feeling of loss, having had a pregnancy so rudely interrupted and ended. I will never know the satisfaction of growing and delivering my own baby.”

“My boy is a fighter and can accomplish amazing things” Despite an early start and hospital stay, Callum is thriving today. But the memories of being on the neonatal unit have stayed with Sarra.

“We are so fortunate that our miraculous little bundle managed his neonatal journey relatively uneventfully and quietly made his way through the unit, graduating 60 days later when he was discharged and allowed home. His only job was to grow and he has done so – slowly but with little fuss. What an incredible little human we have been gifted.

Callum, five days old

“Even still the mark of our neonatal journey remains with me. I think about it all the time. It never leaves. Every day I relive some of those days in the unit through vivid flashbacks and intrusive memories, but I am also reminded how lucky we are. There are little fighters who don’t manage to come home and whose journey begins and ends in hospital. I think of those wonderful babies whenever I see mine.

“But I’m determined that while my experience of pregnancy, birth and the neonatal unit has changed me, it will not define my child’s life. As soon as he is old enough to understand, I will stop talking about my experience.

“I don’t want him hearing adults discussing him or his early arrival. I don’t want him hearing about my trauma. I don’t want him to hear that he might not be as big as the other boys. My boy is a fighter and can accomplish amazing things. We know this because he’s done it already.

Callum, four months old

Sarra’s story 39

“Say how you feel.

You’ll be surprised by how many other parents say ‘I felt like that too’” “While I might be a member of the premmie club, which brought me grief, sadness, worry and miracles in equal measure, these are all chapters of my story; I’m determined they won’t be part of his. He’s not a member of this club.

“He’s a strong, determined, ingenious little boy who held his mum’s hand and led the way, guiding me through a nightmare of a journey. This is what will define my little boy.”

Having watched Callum fight in neonatal care and come through the other side, Sarra has a message for other parents: “I now appreciate how very hard it is to have a baby in a neonatal unit but talking about it helps. Don’t be afraid to say how you feel and ask for help. You’ll be surprised by how many other parents say ‘I felt like that too.’”

There are hundreds of parent’s stories on the Bliss website for every stage of your neonatal journey. To read more visit bliss.org.uk/your-stories

Celebrate your baby’s journey with a Bliss Sunshine Fund When a baby born premature or sick fights against the odds it’s a great reason to celebrate.

By opening a Bliss Sunshine Fund you can mark special milestones while supporting the 90,000 vulnerable babies born needing neonatal care every year.

Find out more about Bliss Sunshine Funds at: w bliss.org.uk/celebrate-a-special-occasion e personalfunds@bliss.org.uk t 020 7378 5740 and ask for Dan

How you can support babies this year From baking cakes to running a marathon, there are so many ways to support premature and sick babies and raise money for Bliss.

Obstacle races Tough Mudder The GRIM Challenge The Spartan Race series Test your strength and stamina with one of these infamous races. Throughout the year.

Running

Marathons Brighton Marathon 17 April Virgin Money London Marathon 24 April

Half marathons Adidas Silverstone Half Marathon 13 March Great North Run 11 September Royal Parks Foundation Half Marathon 9 October

Other challenges Trekfest Beautiful scenery awaits you on these two treks.

Brecon Beacons 4-5 June

Lloyds Bank Cardiff Half Marathon 2 October

Peak District 3-4 September

Running festivals

Skydiving Tick this one off your bucket list and join Bliss at various locations across the country throughout the year.

Edinburgh Marathon Festival 28-29 May Bournemouth Marathon Festival 1-2 October

Great North Swim 10-12 June Grab your swimming costume and join Bliss in Windermere, Lake District, for the swim of your life.

Overseas challenges Inca Trail Trek to Machu Picchu High Atlas Toubkal Trek Everest Base Camp Be part of these once-in-a-lifetime challenges – you won’t be disappointed.

Various dates in 2016 and 2017

Bliss events Bake for Bliss Bake and sell cakes for premature or sick babies.

All year round Bliss little heroes Join us for this brand new superhero walk event, celebrating little heroes across the UK. Spring/Summer

Little lights walk Organise your own walk to mark World Prematurity Day on 17 November or join Bliss in London for our flagship walk on 19 November

Cycling Two iconic cycling challenges, not to be missed Prudential RideLondon 100 31 July London to Paris 1 July

“I can't believe the amount of support from the spectators.

So many people were cheering me on because of my jersey! So amazing.

Thanks for taking me in as a part of the Bliss family.

Same time next year?...”

Want to take part?

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

Naz Rafiq (pictured) Emma Gooding-Brown, and Matthew Ramsden - For speaking about their experiences to help train health professionals Chris Heaton-Harris MP - For leading a debate in Parliament to mark World Prematurity Day

Leigh Dumighan and Michele Meadows - For raising £17,000 for Bliss in 2015. Leigh also supports Bliss through her company, Vija Design

Volunteers Bianca Fryer, Carla Hubbard and Lead Nurse Ben Dockerill - For fantastically supporting World Prematurity Day on their unit in Barnsley

We couldn’t do it without you

Ray Mealing (pictured with his eldest daughter Stephanie) - For raising more than £8,000 for Bliss in memory of his daughter Katie and her baby

Bliss’ work is only possible thanks to our amazing supporters.

Helen Jackson and Tilly-Tally Baby Design Furniture - For delivering gifts to babies on neonatal units in Yorkshire at Christmas

There are so many people who make Bliss’ work possible – too many to fit on one page! We want to say a huge thank you to each and every person who gives their time, energy and money to help premature and sick babies. Thank you.

Team Kameleon - For completing the coast-tocoast challenge, raising more than £6,000

Sweet Factory and Mhor Sweets - For raising more than £250,000 for Bliss since 2010 Lorna Harrison - For planning to raise £18,000 by the time her twins are 18. Her Halloween party raised £1,600 AIG - For taking part in the Bliss corporate abseil and raising £3,045

Michelle Berry and staff at Calderdale Royal Hospital - For raising £444 from a bake sale on their unit

Family group co-ordinators in the Midlands and South West - For providing excellent care to families after they leave the neonatal unit

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Bliss is here to help 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.

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