Little Bliss Spring/Summer 2017

Little Bliss

Spring/Summer 2017

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

Torn between children the challenge of having one baby in hospital and another at home Eight ways to help someone with a baby in neonatal care An interview with the woman behind the campaign for extended parental leave for the parents of premature babies

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 5 Real life The journey of baby Millie born with a congenital diaphragmatic hernia

On the cover 12 Torn between children

15 Interview Catriona Ogilvy talks about her mission to extend parental leave to provide extra support for the parents of premature babies

Support comes in many forms It’s not easy having a baby in neonatal care. Whether your baby is admitted for just a few hours or many months, the journey can be challenging and your parental leave can be spent in the hospital with your baby, instead of at home.

In this issue we hear from several families with very different experiences; from a dad whose baby was born early (p21) to two families whose babies were born full term with complex medical conditions (p5 and p18), and from the mum whose personal experience inspired a campaign for extended parental leave, which Bliss is supporting.

Through their stories I am reminded just how vital practical and emotional support is when you have a baby in neonatal care.

So I want to remind you that Bliss is here to help if you need it. See the back page of Little Bliss for more information, and look out for the research updates at the end of each story in this issue to find out what else we’re doing for babies and families.

21 Guest blog Dad Steven tells of his unique bond with his son Edwin, who was born early

24 Parent-to-parent advice Eight ways to help someone with a baby in neonatal care

29 Bliss remembers Tribute to Simon Newell, a neonatologist renowned for putting families at the heart of his practice

30 Bliss updates

Caroline Lee-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

New information on weaning your premature baby and how to care for your baby on the neonatal unit. As well as the results of Bliss’ latest report on neonatal care in Scotland.

This issue of Little Bliss is kindly sponsored

by Britax 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 2017. No part of this publication may be reproduced without prior permission from Bliss.

RideLondon 46 with us A fun and fantastic ride to enjoy with friends and family or solo Ride 46 miles on London’s traffic-free roads on Sunday 30 July, and help raise money for premature and sick babies.

“The Bliss support totally made my day.

It was an emotional day anyway but I had a few tears every time I passed one of the cheer stations!

So many other people shouting ‘go on Bliss’ as I cycled past! A real day to remember. Thank you so much for all the support.”

Claire Cardoo

Pledge to raise £250 and you’ll receive: A free Bliss cycle kit A meeting with the Bliss team before and after the race

A forum to share training tips with other riders

Bliss photographers along the route, capturing your experience

Regular information and fundraising tips from us

The best cheerers on the course

t 020 7378 5745 e meganl@bliss.org.uk w bliss.org.uk/ridelondon46

Real life

5

Millie shortly after birth

“Our warrior princess” Louisa and Glenn were looking forward to the arrival of their first baby when a scan uncovered a mass on her left lung that was revealed to be a congenital diaphragmatic hernia.

“At 34 weeks we were taken into a bare consultation room with just two chairs, a table and a box of tissues and advised that we were being referred to St George’s Hospital 60 miles away from home,” Louisa says.

Her daughter Millie had left-sided congenital diaphragmatic hernia (CDH) – a life-threatening birth defect in which a hole in the diaphragm (the muscle under the lungs) allows organs from the abdomen (stomach) to move into the chest.

“They explained they couldn’t see her left lung so couldn’t identify the level of damage that had been caused. It felt like our world was crashing down around us.

What was supposed to be the happiest time of our lives was being cruelly taken away and the odds of her surviving were drastically reduced.”

Millie was due to be delivered by caesarean section at 38 weeks but just one day before, Louisa was admitted to hospital and Glenn had to find a hotel for him and his children until a place became available at the Ronald McDonald house in Tooting.

Louisa’s caesarean was then cancelled for a further two days because no incubator was available for Millie.

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Real life

“I just couldn’t stop looking at her, questioning why this had to happen to my baby girl.”

“The stress of waiting and not knowing how much damage her CDH had caused took every ounce of energy from us. But when I arrived in theatre the nurses were singing to the radio around Millie’s incubator.

It was so reassuring to see how calm they were. My baby would be in safe hands.”

Doctors decided that Millie would be paralysed and ventilated from birth to prevent her using her lung and causing more damage.

“I laid in theatre not knowing what was happening to her, but Millie weighed 7lb 5oz so I had faith that she had the best chance of fighting the CDH.” Louisa wasn’t able to see Millie until the next day. “I could only put my hands

Doctors intubating Millie immediately after birth

through the incubator to touch her tiny hand, which was black and blue from the cannula. She was on life support, she looked so fragile. I just couldn’t stop looking and staring at her, questioning why this had to happen to my baby girl.”

Louisa and Glenn found the situation even more difficult being away from home and their friends and family. “The nurse looking after Millie kindly gave us a Bliss booklet to read. It had the most overwhelming effect knowing there was this support network available to us. I would sit by her incubator reading the booklet digesting and understanding the journey ahead of us. It made me feel so supported.”

The family received another shock when they were told Millie needed to have her operation much sooner than expected.

A scan had revealed that Millie’s small bowel, large bowel and kidney had all been pushed through the hole in her diaphragm and were resting on her lung.

As a result her lung was only operating at three-quarters of its capacity.

Louisa and Glenn with Millie at two days old

Real life

Millie at four months But following her operation Millie amazed doctors by recovering quickly and moving to high dependency from intensive care after eight days. One day later she moved to special care and five days later she was well enough to be transferred back to her local hospital.

“The nurse gave us a Bliss booklet. It had the most overwhelming effect knowing there was this support network available to us. It made me feel so supported.”

“Her recovery amazed us all. Apart from jaundice and a slight infection after her surgery she looked so healthy. For a CDH baby to recover so quickly is unheard of!

We know we still have a journey ahead of us until we understand the long term

Millie today, learning to swim impacts of her left lung not forming properly but to look at Millie now you would never know the battle she’s had to face so early on in her life. She will forever be known as our warrior princess.”

Bliss is supporting research looking at doing surgery on babies before they are born Bliss is supporting a research project looking at developing new surgeries for babies while they are still in the womb. This could reduce the risks of premature labour and the number of paediatric admissions after birth.

Bliss’ role is to make sure that parents are consulted and involved in this research.

The project is being led by a team at University College London in partnership with KU Leuven in Belgium. In October 2016, three doctoral students who are working on the project ran the Royal Parks half Marathon for Bliss and raised £1,321.

Find out more about this work at gift-surg.ac.uk

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8

Look at them now

“My inspiration” Every issue we follow the amazing, inspiring and sometimes miraculous journey of a premature or sick baby. In this issue we meet Justin Rocchi, who was born at 31 weeks.

Birth

3 weeks Justin was born on 27 June 2003 at Bedford Hospital. He was just 31 weeks gestation and weighed 1.9kg.

After surger y

Justin’s tummy had been expanding over a number of days so he was transferred to Great Ormond Street Hospital with suspected necrotizing enterocolitis*. He had surgery the next day and spent a week there. *Necrotizing enterocolitis (NEC) is a serious illness where tissues in the intestine become enflamed and begin to die. Visit bliss.org.uk/nec for more.

1 month

Justin’s mum Stephanie said: “It was very hard to see Justin go through really horrendous tests and waiting for surgery to end. He was intubated for two days and we were scared he wouldn’t wake up. Ricky broke down a lot in those days. It was just a horrible experience.

On 30 July Justin went home. “It was a celebration for all of us and Justin’s brothers came with us to pick him up. It was a relief to be home together but it was daunt ing too.

We were still scared that Justin would stop breath ing.”

Look at them now

1 year

Justin celebrated his first birthday with his family.

“By then he was a good eater. I was holding him over my shoulder and without any of us noticing he reached over and grabbed a massive piece of cake. We all had a great laugh when we saw the cake in his hand!”

3 years Justin was really excited about his first day of school though Stephanie worried he may have difficulties they had not spotted yet. After a few days Justin had settled in and has loved going to school ever since.

“Justin is so different now to how he was in the first few weeks of life. He is my inspiration. I know whatever difficulties we encounter they will be nothing compared to those first weeks and we will get over them. The will and fight to live is enduring.”

5 years By the time Justin was five he did no t have any further medical iss ues. The family ha d moved to Italy, Justin was doing well in school and he had taken up football, his favou rite sport.

10 years Send us photos of your baby’s journey so far

Stephanie and Ricky had two parties to celebrate Justin’s tenth birthday. “Another birthday achieved and another reminder of how grateful and blessed we feel that everything turned out well for Justin.”

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search blisscharity #littlebliss

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Real life

Sienna and Sayuri

Torn between children Nisha, her husband Roy, and their two year old daughter Sayuri were excitedly awaiting the birth of baby girl Sienna when Nisha went into unexpected labour at 32 weeks. Here Nisha tells Little Bliss about the struggle of having one baby in hospital and another at home.

Nisha says this rocked her sense of stability as she had never been left alone before.

“Our neighbours later told us that she refused to take her jacket off, staring at the window constantly asking where Mama and Papa went.”

“Sienna was very eager to come into the world at 32 weeks. She spent a month in hospital and soon we were facing a predicament which we never thought we would be in. How can we spend quality time with each child in two different places?

The obvious choice is to spend time with the baby who needs the most care.

Physically it was Sienna, but emotionally it was Sayuri,” says Nisha.

After Sienna was born Roy went back to work and Nisha settled into a hospital routine spending the day with Sayuri and going straight to the hospital to see Sienna once Roy came home.

When Nisha went into labour she and Roy left Sayuri with a trusted neighbour but

“We took this in turns as Sayuri was quite disruptive within the ward. Issues started to arise as I didn’t have much time for kangaroo care or to establish breastfeeding. I would look over at the women who had spent all day with their children, nursing them, bathing them and

Real life

holding them close to their chest. I was so jealous.

“We didn’t have any friends or family near so our hands were tied with the amount of time we spent with Sienna. From 5-8pm my husband and I would take hourly shifts but this also included expressing time, so during the week I only spent a little over an hour with Sienna. Roy took to our situation with a direct approach and created a timetable. We couldn’t stretch time and we couldn’t ignore Sayuri either. It made us both so upset.”

Nisha said leaving Sienna at the hospital every night was like someone kicking her in the stomach but that she needed to create a sense of routine at home for Sayuri. She looked forward to the weekends when she could spend time with Sienna but Roy took the lead in her first bath, tube feeds and cares – Nisha was still in shock from all that had happened.

Sienna in her incubator

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“I think lots of mums of premature babies blame themselves for how early their child is born. It already feels like you’ve let them down before they have reached your arms.

My first blubbering words to Sienna were “I’m so sorry.” My heart sank looking at her in her incubator with all the wires and tubes attached, foam seeping out of her mouth whilst she struggled to breathe.

“I’ll never forget the day we all laughed when Sayuri greeted her sister with ‘Hello gorgeous!’”

“Simultaneously, I felt I had failed Sayuri by damaging her sense of safety. She would literally scream down the hallways when I left to spend time with Sienna.

So eventually, I just started to take her with me, but any parent knows keeping a two year old quiet and their hands to themselves is impossible.

Roy with Sienna

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Real life

“Looking back I wish I had been more vocal about asking for help.”

“We kept positive for Sayuri and tried to develop her relationship with Sienna by encouraging her to hold her sister’s hand and to talk to her. I’ll never forget the day we all laughed when Sayuri very loudly greeted Sienna with ‘Hello gorgeous!’”

Nisha says that having to decide how to split her time between Sienna and Sayuri wasn’t something she was prepared for, but that the neonatal staff helped enormously by being patient with Sayuri.

“Nothing can prepare you for effectively choosing between your children’s needs, but looking back I wish I had been more vocal about asking for help.”

Today, Sayuri and Sienna are doing incredibly well and Nisha says they have an amazing sisterly bond. Nisha is hoping Sienna can attend the same nursery as

Sayuri and Sienna today

her sister so that they can continue their journey together.

Bliss has a series of videos about life on a neonatal unit which can help children to understand the environment.

Visit bliss.org.uk/about-neonatal-care You can also find information about siblings in The Bliss Family Handbook (under further reading) and Your Special Care Baby (p46).

These can be ordered at bliss.org.uk/shop

How is Bliss supporting siblings like Sayuri and Sienna?

Bliss is supporting the work of Lynne Wainwright, a researcher who is looking at how children are affected by their sibling’s admission to hospital. Bliss is sourcing families to take part in the research to identify whether a supportive intervention is needed for siblings, and to better understand how to effectively support the whole family.

Interview

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The campaign to extend parental leave Catriona Ogilvy, founder of The Smallest Things Charity and mum of two sons who were born premature, knows first-hand how having a baby in neonatal care can impact a family. Here, she tells us about her campaign to extend parental leave for parents of premature babies, which Bliss is supporting.

What inspired you to campaign for extended parental leave?

Both my sons, Samuel now aged five, and Jack aged three, were born prematurely.

Samuel spent eight weeks in neonatal care.

I just couldn’t understand how each day I spent sat beside his incubator whilst he was on a life support machine could be classed as my maternity leave. When we finally came home my time with him had been cut short. His corrected

age meant he was developmentally only five months old when he first went into childcare. He was too young and I wasn’t ready.

Why is it so important to you?

Bonding with a baby in neonatal care is incredibly difficult; it is an unnatural medical world of lines and wires, machines and monitors, and as a parent you can feel lost.

Although any change now won’t affect my own experience of premature birth, it is incredibly important to the thousands of families who experience premature birth every year. If I can make that change happen, meaning that babies born too soon have the time they need with their parents, it would be amazing!

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Interview

What have you achieved so far?

The campaign has achieved so much, and has received overwhelming support since I started my petition in 2015.

The petition currently has over 127,000 signatures and this was presented to Margot James MP, who is responsible for parental leave, on 17 November 2016 (World Prematurity Day). Ms James agreed that we had a compelling argument and her department will now look into the possibility of bringing about this change.

My local MP Steve Reed, who visited the neonatal unit at Croydon with Bliss, introduced the Maternity and Paternity (Premature Birth) Bill in October 2016. And the campaign was debated by members of the Scottish Parliament in December 2016.

How does it feel to have such support for your campaign?

The support has been amazing and at times I have been overwhelmed by how far it has reached. The media coverage across all the major news channels was more than I could ever have hoped for and really has helped to raise awareness of what is often a hidden world of neonatal care.

What will you do next?

Next we will focus on the neonatal journey that doesn’t end when you leave the NICU doors, using the lasting impact of NICU to support our argument for extended leave.

For example, we know that mothers of premature babies are much more likely to experience post-natal depression, yet their

needs are often overlooked. More time through extended leave would allow mums to recover, to seek the support they need, and to have time to bond with their new baby before having to return to work.

“Samuel’s corrected age meant he was only five months old when he first went into childcare.

He was too young and I wasn’t ready.”

How can people help?

The best chance of bringing about this change is if policy makers back the campaign. You can either write to your MP, or, go along and visit them at one of their constituency meetings. Details of how to contact them should be on their local websites.

Follow the campaign and get involved at thesmallestthings.org The Government has pledged to develop new guidelines for employers on how they can support mothers of premature babies during their maternity leave. While Bliss welcomes this, we believe the government needs to go further to support parents who face extra financial and travel pressures, as well as losing time at home with their baby before they have to go back to work. We will continue to campaign for changes to maternity leave legislation that better supports parents of premature and sick babies.

Heroes assemble!

Host a Bliss Little Heroes superhero walk this summer

Get your free fundraising pack at bliss.org.uk/littleheroes

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Real life

“The best present I could have wished for” Just over half of the babies in neonatal care are born full term but sick. Here, Sarah shares the story of her daughter Heidi who was deprived of oxygen shortly after birth – a condition called Hypoxic-Ischemic Encephalopathy (HIE).

“My daughter Heidi was born on Mother’s Day and she was the best present I could have wished for. Everything was fine for the first hour of her life but when the midwife came to weigh her she was floppy like a rag doll.

“The midwife put her in an incubator and gave her oxygen. Strangely, at this stage I didn’t panic, but then the midwife hit the call button and the room filled with people who started to resuscitate our baby girl.”

Heidi was transferred to another hospital to be cooled. Her core temperature was

lowered to minimise the damage to her brain that may have occurred due to the lack of oxygen.

“When we arrived at the unit my chin wobbled the whole way down the corridor as I desperately tried to hold back the tears, but when I saw Heidi in the incubator I just burst.”

“We soon got into our NICU routine, and I had several more chin wobbling moments, but also had times of feeling optimistic and the need to be strong for our little girl.”

Real life

For the first three days Heidi was unresponsive. Once the cooling was complete, she was slowly warmed back up and Sarah and Steve were able to hold her for the first time.

“It wasn’t quite the cuddle a mum would hope for but I was over the moon. We had a little chat, and I made it quite clear that she had to start playing by the rules now, she had caused us enough worry and she was only four days old!

“We soon got into our NICU routine, and I had several more chin wobbling moments, but also had times of feeling optimistic and the need to be strong for our little girl.

“Heidi was in that NICU for ten days, and we were lucky enough to be able to stay at one of the parent rooms in the hospital.”

Heidi shortly after birth

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Eventually, Heidi was moved to a high dependency unit at another hospital where Sarah and Steve could do all of her cares.

After two weeks she was transferred to the children’s unit where the family had their own room and could be together all the time. But the excitement of the move was short lived.

“Reality had hit home, Heidi would need significant care and we didn’t know what the future would hold.”

“I don’t know whether it was the change of environment or just one of those days but Heidi couldn’t have played up more.

20 Real life

“I felt like the proudest mum ever as I pushed the pram out of the hospital.”

I think she must have been testing us to see if we were up to this parenting malarkey.

She needed constant attention and her alarms kept going off. We couldn’t take our eyes off her for one minute.

“After an exhausting night we sat on the bed and cried. It was the first and only time we both struggled at the same time.

Usually we’d take it in turns to have a wobble, and manage to pick each other up, but this was different. We felt like we couldn’t look after our own daughter.

Reality had hit home, Heidi would need significant care and we didn’t know what the future would hold.

“Slowly things improved, we managed to snatch the odd hour of sleep, and got into a routine. The rest of the time was far less traumatic. We started to learn about each other, and we even started to have fun.

Then a date was set for Heidi to come home on oxygen. We didn’t dare to believe, just in case something happened, but we were given the okay.

“It was emotional leaving the unit, we hugged and cried as we said our goodbyes, but I felt like the proudest mum ever as I pushed the pram out of the hospital. We were ready for the next part of our journey and it was time for the fun to really begin.”

Heidi is now at home and is doing well.

She has complex care needs and has been diagnosed with Cerebral Palsy. She also has a tracheostomy and is hearing and visually impaired.

Sarah says, “We have learned to celebrate every small development. She is doing much better than many thought she would in those early days, and we have learnt to enjoy life with her. She is aware of her surroundings and has her own way of communicating with us - we certainly know if she isn’t happy!”

If you have been affected by any of the issues in this article and would like support, please call the Bliss helpline on 0808 801 0322 or email hello@bliss.org.uk

How is Bliss helping to improve care for babies like Heidi?

Bliss is supporting Vânia Oliveira, a researcher who is looking to see if monitoring the variability of a baby’s heart beat can help detect brain injury.

This could identify babies that need cooling treatment who show no other signs of brain injury, improving the care they are given. Cooling has been shown to reduce death and significantly improve long-term development for babies. It is hoped that by doing this work more babies can benefit from being cooled.

To find out more about research Bliss is involved in please visit bliss.org.uk/research and please consider a donation to support this work bliss.org.uk/donate

Guest blog

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Edwin and Steven’s special bond

Guest blog: my journey into fatherhood

By Steven Troop

Steven is the proud father of Edwin who was born four and a half weeks early. Here, he describes the first time he and Edwin bonded through an incubator porthole.

Edwin Brian Troop was expected on the 27 September 2016, but our planning was cut short when on the 22 August it was decided that Edwin needed to be delivered by c-section.

From 11am that day I was in full blown panic…must call mother in law, sisters in law, bosses… must get tiny baby clothes, tiny nappies, hospital bag. Fortunately Sarah was calm and told me to sit down.

My journey into fatherhood began when the paediatrician showed me around the neonatal unit and told me what to expect – but it was all very different to what I

had thought. As we all headed down to theatre Sarah made me promise that whatever happened I would stay with our son.

At 3.29pm Edwin was born weighing 4lb 4oz and there was nothing greater than hearing his first cry. After cutting the cord and taking a few pictures it was time for

“The hardest part is having to leave the hospital on the first night with your partner in one room and your son in another.”

22 Guest blog

It was this experience that kept me strong through the coming days. Any parent longs to hold their baby when they cry, or comfort them when they are sick, but when your child is born early everything is done through holes in an incubator. The hardest part is having to leave the hospital on the first night with your partner in one room and your son in another.

Cutting the cord after Edwin’s birth him to go to the neonatal unit. There, nurses started to attach cables to Edwin and administer medication. Fear started to kick in and all I wanted to do was hold him, but that wouldn’t happen for many hours.

Instead all I could do was put my finger through the incubator.

Edwin’s first bath That first night when I came home to an empty house I couldn’t take myself to bed.

Everything felt strange. Lying on the sofa things didn’t feel right. I was a father yet my son wasn’t there. I was a father but I was upset, not happy.

“It felt like I was being robbed of early fatherhood.”

Edwin shortly after birth Our doctor could sense how much I wanted to hold him, so he told me to place my finger in Edwin’s hand and watch the monitors. As I felt his gentle hand tighten on my finger the lines and numbers started to change on the screen. The doctor said, “See he knows you are his father”. A tear started to fall down my face.

Leaving Edwin in the hospital each night was painful. Even though he was doing well medically it still felt like I was being robbed of early fatherhood.

Over the ten days we took any opportunity we could to be involved in Edwin’s care and whenever he was upset he would grip my finger and within seconds he would be calm.

Guest blog 23

steps forward and six back. Since being home we have had two hospital visits, one for a rapid drop in body temperature and one for a lack of weight gain, which is still an ongoing battle, but Edwin is just about to overtake the 7lb mark and it feels like we are now past the hard slog.

Steven giving Edwin his first bottle Finally the day came when we could take Edwin home and we could start being a family. Now, I can already see his personality coming through. He watches and takes everything in, and as we look at picture books his gaze holds longer at the boats. Still to this day when Edwin feels scared or stressed I slowly feel his hand grip around my finger.

Steven reading to Edwin As I write this I can still feel the anger and shame I felt for not being able to hold my son when he needed me and be there. But now I can see him grow and achieve his milestones and all Sarah and I hope is that he is happy and grows up knowing he is loved.

The birth of my son Edwin was the most upsetting but happiest time of my life and as we continue our journey as a family I often think back to that first day when Edwin gripped my finger and the doctor said, “He knows you’re his father.”

Edwin at three months old Since his early arrival things have felt like a fight, and some days we have taken two

To read more stories like Steven’s from parents who have been through neonatal care visit bliss.org.uk/news

24 Parent-to-parent

Parent-to-parent

Eight ways to help someone with a baby on the neonatal unit Knowing how to support someone when their baby is in hospital can be extremely difficult. Mums, Laura and Holly both had premature babies who spent nine and a half weeks on the neonatal unit. Now they’d like to share their top tips on lending a hand during this time.

1 Offer to cook a meal

Many parents end up spending a lot of money on hospital food or missing meals as most of their time is spent on the neonatal unit, so offering to cook a meal can be much appreciated.

2 Help by ru

s nning errand

r do alk the dog o Offering to w e can be a hug the washing g n ri e ff “O ys, help. Laura sa it is great, but lp e h l practica my lt to accept. If can be difficu out just do it with friend didn’t ably ld have prob asking, I wou I orry’, even if said ‘don’t w .” lp e h d the really wante

4

Update friends and family

3 Babysit other children

Some families may have older children who need babysitting or picking up from school. It could be a huge help to offer this support to them.

Holly with he

r daugther Em

ma

Offering to update friends and family about the baby can also help.

Laura says, “I found it particularly hard giving people updates, when there usually weren’t any. It was difficult to send a message saying everything was fine when it really didn’t feel like it.”

Parent-to-parent 25

5 Wait to be invited to visit

Holly says, “Each time someone visited it zapped our energy ensuring they followed all of the rules. We spent a lot of time feeling guilty about turning people down but we needed the space.”

If you do visit always abide by visiting hours and familiarise yourself with the unit’s rules and guidelines, for example on how to wash your hands.

Share your advice on social media

search blisscharity and use the hashtag #littlebliss

daries 6 Respect privacy and boun ing the You can do this by not touch baby unless invited to, and not looking into other babies’ incubators.

Don’t be offended if the family needs a moment alone with each other or a health professional.

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7Avoid medical questions Try not to ask too many medical questions, this may be private or sensitive and a parent will share this with you if they want to.

8 Know what to say

It can be difficult to know what to say but a good rule is to say what you would say to any other parent, for ex ample, “They look just like you”.

Avoid saying how tiny the ba by is or what you read ab out premature or sick babie s.

26 Events calendar

Events calendar April – November 2017 There are lots of fun and exciting ways to fundraise for Bliss. From cake sales to climbing mountains, we’ve got a fundraising event for you. So choose your challenge to support premature and sick babies this year.

Runs

Challenges

Cycling

Great North Run

South Coast Challenge

Dragon Ride

Run between Newcastle and South Shields in the world’s greatest half marathon 10 September

Royal Parks Foundation Half Marathon

Walk through some of England’s finest scenery along the South Downs Way. Walk, jog or run 100k, 50k or 25k 26-27 August

Skydive for Bliss

Cycle in the UK’s most prestigious sportive, starting in picturesque Margam Park, Port Talbot, and taking in the beautiful Welsh countryside 11 June

A picturesque race through Various dates and locations Prudential RideLondon four of London’s Royal Parks available across the UK Surrey 100 and 46 Challenge yourself to 08 October complete 46 or 100 miles Bliss Corporate on closed roads around Mud Rush Tough Mudder London and Surrey in the Team up with your A 10-12 mile obstacle colleagues and get muddy biggest cycling event in course designed to test for Bliss in this 5k obstacle the UK your strength, stamina challenge and mental grit. Various 30 July locations and dates 23 September

Bike for Bliss

Set your own cycling challenge. Anytime, anywhere, any distance

Events calendar 27

Overseas

Bliss events

Great Wall of China Trek Bliss Little Heroes This challenge is physically demanding but offers fabulous scenery and a fascinating insight into China’s rich culture and history 16 October 13 April (2018)

Inca Trail Trek to Machu Picchu

Trek this breathtakingly beautiful route through valleys and high passes in Peru, scattered with fascinating Inca ruins 02 September 21 April (2018)

Grab your mask and cape and host a superhero sponsored walk in your area March to October

Bliss Little Lights Walk

Host a lantern-lit sponsored walk with friends and family to mark World Prematurity Day November

If you still can’t decide what you want to do, why not request one of our fundraising packs for inspiration and ideas.

London Bliss Little Lights Walk

Join Bliss for our lantern-lit walk around Tower Bridge 18 November

Hold your own event

If you want to organise your own event let us know and we can send you everything you need, such as balloons, stickers, posters, t-shirts and collection tins

Want to take part? Contact the Events Team: t 020 7378 1122 e events@bliss.org.uk

w bliss.org.uk/fundraise

are proud to support

full term and premature baby clothes from mothercare sizes start from 3lb/1.4kg to find out more visit mothercare.com

Bliss updates 29

Special tribute Remembering renowned neonatologist Simon Newell

Simon’s later work at the Leeds General Infirmary NICU, made a profound difference to families across Yorkshire.

He set the qualifying exam for new paediatricians, published textbooks and held influential positions in the Royal College of Paediatrics and Child Health. He also had a passion for training junior doctors and an emphasis on communication skills.

Simon’s colleague, Lawrence Miall, said: “Simon was a passionate teacher, educating the next generation of neonatal doctors and nurses. He had a particular skill in supporting parents during stressful times - he was wise and knowledgeable but also a skilled communicator who saw his patients as important human beings within the family. This was highly valued by parents.”

Simon Newell, who died suddenly last year at the age of 59, was a leading Consultant Neonatologist who put families at the heart of his practice and, through his research and work in training and educating doctors, changed the way the most vulnerable babies are cared for.

Simon knew from the outset that he wanted to be a paediatrician and during registrar training in Birmingham in the 1980s he received a grant to look into the possible association between reflux and apnoeas in premature babies.

“Part of the team that saved our son’s life when he was born 14 weeks early. Dr Newell always managed to make even the really tough days bearable.”

Messages from families whose babies he had cared for, showed the compassion and kindness he brought to his work, which inspired and educated colleagues and is part of Simon’s far-reaching legacy in the field of neonatology.

30 Bliss updates

Bliss is honoured to be chosen as the beneficiary of funds raised in Dr Newell’s name.

Fundraising for Bliss in memory of Simon Simon’s wife Debra and three children have chosen to support Bliss by fundraising in his memory. The Dr Simon Newell Fund has raised nearly £11,000 and Simon’s daughter Penny will also run the London Marathon 2017 to raise a further £2,500.

“My Dad was an intelligent role model who I looked up to, and a caring person who took care over his career.

One of my most recent (and final) memories of him is going running together through the local farming fields near our home. He was a good runner and inspired his family to keep fit and active. Running the London Marathon for Bliss is a perfect way to remember and continue his contribution to babies’ health.”

To support Penny visit: http://bit.ly/blisstribute

In brief Coming soon: information on weaning your premature baby Bliss is creating new information about weaning your premature baby. It will help you to tell when your premature baby might be ready for solid foods, as well as

including stories from parents.

Keep an eye on Bliss’ Facebook, Twitter and Instagram pages (search Blisscharity) to find out when this information is released.

Bliss also recently released information about how to reduce your baby’s risk of catching common infectious illnesses. It includes how to prevent the spread of infections and what to do if your baby becomes ill.

Find this information at bliss.org.uk/winter

Improving care: Portsmouth unit receives Bliss award Portsmouth neonatal unit become the second in the country to receive an award from Bliss for involving parents in their baby’s hospital care. They were accredited with the Bliss Baby Charter following multiple assessments. Nicola Frith from Bliss said: “I was particularly impressed with the psychological support provided to parents who have regular access to an onsite counsellor. The facilities that the unit offers, including rooming in rooms, private consultation rooms and the family lounge/

Bliss update

kitchen where free meals are provided to parents, also contributed to enhancing the family experience.”

Bliss is currently running workshops for health professionals across the UK to give more information about the Baby Charter and to share examples of best practice.

31

In detail New video for parents about caring for a baby in neonatal care

For more information please visit bliss.org.uk/bliss-baby-charter

Research: the effects of delayed cord clamping The results of a research study carried out by Nottingham University, supported

by Bliss, has found that overall parents felt positively about having their baby next to them when receiving care after birth.

The study compared the experiences of two groups; one where the baby’s cord was clamped within 20 seconds and the baby was either cared for next to the mother or at the side of the room, and another where the baby’s cord wasn’t clamped for at least two minutes and the baby received care at the bedside.

Mothers whose babies were cared for next to them reported feeling more reassured and involved, and that medical staff communicated with them more effectively.

To read more results from parents who took part in the study visit nottingham. ac.uk/nctu/other-research/pretermbirth

As part of World Prematurity Day on 17 November, Bliss produced a new information video to help parents provide hands-on care to their baby when they are in hospital.

We know that babies have the best chance of survival and quality of life when parents are fully involved in their baby’s care, but that family-centred care is not currently available or supported in all neonatal units across the UK. Watch the video now at bliss.org.uk/what-is-family-centred-care Bliss joined international partners in raising awareness of the 15 million babies that are born prematurely across the world each year - 60,000 of them here in the UK. Landmarks across the world shone purple - the colour of the campaign – including Trafalgar Square in London, Manchester Town Hall and Gateshead Millennium Bridge.

32 Bliss updates

Lots of events took place to help raise awareness, including activities at neonatal units across the UK and sponsored Bliss Little Lights Walks, raising money for Bliss.

You can see all of this year’s activities and read stories from the parents of premature of babies at bliss.org.uk/world-prematurity-day.

We are hugely grateful to everyone who got involved and encourage you to join us on World Prematurity Day on 17 November 2017. Keep an eye on our website, or follow us on Facebook, Twitter or Instagram (search Blisscharity) for all of the details.

Six out of eight units do not have enough nurses

Two thirds of units do not have enough doctors

Ten out of eleven units found it difficult to make sure their nurses received the training they need

In your area Latest Bliss Scotland report shows Scottish services are under pressure In January the Bliss Scotland baby report 2017: An opportunity to deliver improvements in neonatal care showed that neonatal services in Scotland are under pressure and lacking the resources they need to meet national standards for safe, high quality care. We found:

Over half of all units do not have enough overnight accommodation for parents of critically ill babies

Only two out of 12 units could support all parents with food and drink costs.

Bliss updates 33

Bliss Scotland volunteer Coady Dorman spoke about when her son Matthew, now two, was born at 29 weeks, and Jeremy Balfour MSP also spoke about the premature birth of his twin daughters and his experience of stillbirth.

Coady says: “It was an absolute honour to be at the Bliss Scotland baby report launch. After feeling so lost two years prior it was so exciting to be able to see the projected changes for future families. Bliss Scotland has been, and continues to be, a huge part of mine and my son’s life since his birth.”

These worrying findings are consistent with the Scottish Government’s own review into maternity and neonatal services, The Best Start.

While The Best Start makes recommendations which could transform services for babies born premature or sick in Scotland, such as putting family-centred care at the heart of services, we are concerned that it falls short of saying that additional investment is needed to close the gaps which exist right now.

The release of our report was marked by an event at the Scottish Parliament, attended by Members of Scottish Parliament (MSPs), health professionals, policy makers and parents.

It was fantastic to also hear from Cabinet Secretary for Health, Shona Robison MSP, who stated that she was keen to work with Bliss Scotland to make sure all babies born needing neonatal care receive the care they deserve.

Bliss Scotland will be campaigning hard to make sure this opportunity is not wasted.

You can help us by taking part in our latest campaign action at bliss.org.uk/babyreportscotland

Bliss Scotland volunteer and mum, Coady Dorman

34

©Paul Harness paulharness.com

Bliss volunteers Thank you to all of our incredible volunteers for providing vital support to families of premature and sick babies. We are so grateful for your continuous hard work and dedication.

Alex Vere Alex’s Hollywood themed ball raised a staggering £20,000 for Bliss.

Monica Saikia For sharing her story for World Prematurity Day and helping Bliss to raise over £13,000.

A BIG thank you!

Roger and Lynn Nolan Roger and Lynn took part in RideLondon 100 in 2016.

Together they cycled 100 miles and raised £4,995 for Bliss.

Gift Surg Team Luis, Michael and Stefano took on the Royal Parks Foundation Half Marathon and raised a fantastic £1,321.68. Gift-Surg is a Bliss supported research project which aims to transform fetal healthcare.

Bank of England Bliss was thrilled to receive £64,000 from an employee banknote auction. Bliss was nominated by Simon Scorer, whose son Ben was born at 26 weeks.

Morgan McKinley Morgan McKinley chose Bliss as their Charity of the Year after their employee Will Hepworth’s daughter Lily was born 15 weeks early.

They have raised over £21,000.

Corey Cox Corey, age seven, is doing a 1000m swim in memory of her brother. She says she want to stop other children having a brother or sister in heaven. So far she has raised over £1,700.

Help the most vulnerable babies to thrive with a gift to Bliss in your Will One in every eight babies in the UK is born premature or sick and in need of specialist hospital care.

As you may know, whether they are in hospital for a few days or many months, or they sadly don’t survive to come home, they are faced with one of the biggest challenges of their lives.

For nearly 40 years Bliss has been there for these babies, and by leaving a gift to us in your Will, you can be there for them too.

We have partnered with The Goodwill Partnership, the largest home-visit Will writing service in England and Wales.

They make Will writing simple. You don’t even need to visit a solicitor – their trained

counsellors come to your home to take your Will instructions at a time that’s convenient for you. After your appointment, your Will is checked and provided directly to you by a fully-qualified solicitor.

You could help vulnerable babies when they need it the most by including a gift to Bliss in your Will. Find out more, or arrange a free home-visit, by visiting thegoodwillpartnership.co.uk/bliss or calling 0844 669 6148 and quoting Bliss.

If you’ve already included a gift to Bliss in your Will, thank you. Your support will help us give future generations of premature and sick babies the best possible start in life.

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

@blisscharity search blisscharity

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