Category Archive: News

CELEBRATING SIBLINGS: HOW TO SUPPORT BROTHERS AND SISTERS ON THE NEONATAL UNIT

This month marks National Siblings Day, and we know that being the older brother or sister of a baby on the neonatal unit can be an overwhelming, confusing, and challenging experience. At Tiny Lives we try our best to make the experience of spending time on Ward 35 as easy as possible for older siblings, but it can be tricky for family and friends to know the best way to support siblings as they navigate the journey.

Here are our top tips…

1.         Clear communication

Open, honest communication is key to helping siblings understand what is happening so they can process it in their way. Encourage brothers and sisters to ask questions and express their feelings and let them know that it is ok to feel scared or sad while reassuring them that their sibling is receiving the best care possible. Tiny Lives Sibling Packs are suitable for children aged 3+ and include a helpful book that might answer some of their questions and ways to help them express how they’re feeling.

2.         Create a routine

Where possible, sticking to a routine can help maintain a sense of normality during this uncertain time and help siblings feel more secure and grounded. Make time for activities that they enjoy and moments just for them.

3.         Offer reassurance

Older siblings might be worrying about the babies health, or the health of mam and dad when they have to spend extended time in hospital. Offer plenty of reassurance that they are loved and cared for, that their feelings are valid and let them know it is ok to ask for help and support when they need it.

4.         Involve them in the process

Depending on their age, involving brothers and sisters in what is happening in the neonatal unit can make the situation less scary and overwhelming. Why not ask them to make a card or a drawing for their new sibling, pick out a special toy to gift or an outfit, or tell them a story?

5.         Share new information

Siblings sometimes have questions about new babies’ condition or treatment and providing age-appropriate information can help them understand what is happening and why their brother or sister can’t come home just yet. Use simple language and be honest about what they can expect so they don’t get a shock when they arrive on the ward.

7.         Encourage emotions

Siblings need to express their emotions during this challenging time. Encourage them to talk about how they are feeling, whether it’s through art, writing, or talking to a trusted adult. Validate their emotions and let them know that it’s okay to feel sad, angry, or confused – in fact, it is completely normal!

8.         Celebrate milestones together

Whether it is joining the kilo club, graduating from the neonatal ward, or hitting a health milestone like coming off a ventilator, include siblings in celebrating achievements big and small. Our Parent Packs include milestone cards and acknowledging these moments as a family can bring some much-needed smiles during a tough journey.

Sign up for Tiny Lives Sibling Memory Making Group.

At Tiny Lives we offer informal sibling support groups for siblings who have spent time on the unit, or whose brothers or sisters have sadly died. The groups involve craft activities and are a chance to meet other children who are having or have had a similar experience.

Children of all ages are welcome at our sibling support groups, no matter how long ago their sibling(s) were on the unit. These sessions run three times a year and provide a safe space for siblings to share their experiences, connect with others in similar situations, and receive additional support. You can find out more about our Sibling Memory Making Groups and book your space here

Tiny Lives funds RVI Neonatal Unit refurbishment!

Tiny Lives is proud to announce that we have funded a remarkable transformation of the Neonatal Unit at Newcastle’s Royal Victoria Infirmary. What was once a space has now been transformed into a nurturing and comforting environment, designed to enhance the overall atmosphere, wellbeing and comfort of families with their premature or sick newborn baby.
Thanks to their generous and dedicated supporters we have been able to provide over £50,000 of funding for the refurbishment that aims to enhance the overall atmosphere and comfort for families. Providing a space that feels less clinical and more nurturing alleviates some of the stress and anxiety experienced by families whose baby is on the Neonatal unit, at what can be one of the most challenging times of their lives.

Kelly Blakeney, Chief Executive of Tiny Lives said,

“Tiny Lives is proud to support the refurbishment of the Neonatal Unit at the RVI. Families are at the heart of everything we do, and we are committed to ensuring that we help to create an environment that gives premature and sick newborn babies and their families the best possible chance to thrive. This is only possible because of the dedication and generosity of our fantastic supporters. “

The completion of the refurbishment, which was undertaken by Grosvenor Interiors, was celebrated this week with an official opening and a special cake being shared with parents whose babies are currently on the neonatal unit. A Mam from Newcastle whose baby girl is on the neonatal unit, said of the completed work,

“I love it! It has made the family room a place where I can relax and have some mind space away from the clinical side of things after doing my baby’s cares.  Its gives me a bit normality”

Dr Jen Dixon, a Neonatal Paediatrician from the RVI who led on the refurbishment said,

“It is essential that the Neonatal unit provides a physical and social environment that is family friendly, comfortable and which enables parents to spend as much time as they wish with their babies, minimising separation and enhancing experiences of care. I am delighted to the say the funding from Tiny Lives has made this possible.”  

Meet, Chat, Learn is growing!

Thanks to your incredible feedback and overwhelming demand, we’re thrilled to announce that Tiny Lives is adding more groups in new locations to accommodate more neonatal parents and babies!

Your feedback has been invaluable in shaping our classes, ensuring they meet the needs of parents and babies who have spent time on the neonatal unit. With the new classes, we’re coming to more locations, making it easier for families to connect with other parents on similar journeys.

We can continue to offer these classes, free of charge to neonatal families, thanks to the amazing support and fundraising we receive from our supporters.

Booking will be opening on 28th March – please look out for:

⭐️ Baby Yoga and Baby Massage classes

• In Newcastle – Tuesday PM with Soothing Baby Massage and Yoga, at West Denton Community Centre

• In Gateshead – Tuesday AM with KalmaLife Gateshead, at MetroCentre Community Hub

⭐️ Music, Movement and Sensory classes

• In Newcastle – Wednesday PM with The Baby Hub, at Owl Tree Children’s Cafe

• In Gateshead – Thursday PM with The Baby Hub, at Raven Valley Gym Club

⭐️ Art and Creative Play Classes

• In Newcastle – Friday midday with ARTventurers Newcastle at Great Park Community Centre

• In Gateshead – Friday PM with ARTventurers Tyne Valley, at Blaydon Youth and Community Centre

There will also be the weekly Bubbles Group, hosted by Newcastle Community Nursing Team and 0-19 service, at Fawdon Children’s Centre, Wednesday PM

Every month, you can also come along to our popular ‘Stay and…’ sessions, hosted by Tiny Lives and our Peer Supporters;

⭐️ Stay and Play, Saturday AM at Alan Shearer Centre

⭐️ Stay and Splash, at Sunday PM PaddlePod Whitley Bay

If you have any questions about our groups, please contact us here.

Parental Input Needed…

Dr Janet Berrington and her team are looking for parental input for a new study that is looking at reducing breathing problems after discharge in preterm babies. The study has funding from the NHS and is currently being set up. Parent views are essential to help the team plan and deliver the study in the best way for families. They are looking for parents who can join meetings online, and they expect to be able to offer re-imbursement for their time. If you think you can help or would like to know more please contact Dr Janet Berrington at the RVI janet.berrington1@nhs.net

35 Miles for Ward 35!

We need YOU to run, walk, cycle, skate, hula-hoop (however you would like) 35 miles in January to support Tiny Lives and Ward 35!

We’re in the same boat as you. We’ve eaten far too much this Christmas and we’re not feeling ourselves but our 35 for 35 challenge is here to save the day!

Covering 35 miles throughout the month of January is a realistic and attainable goal that will help you kickstart your 2023 the right way all whilst raising funds for Tiny Lives!

By encouraging your friends and family to sponsor your challenge, you’ll be raising vital funds for premature, sick newborn babies and neonatal families. You could event get the kids involved and make it a family activity!

Fancy the challenge?

Step 1 – Create a fundraising page. we recommend JustGiving. Simply click ‘Fundraise for Us’ to get started. 

Step 2 – Spread the word. Share the news of your amazing commitment on social media, with friends and colleagues, with everyone! The more people who get access to your fundraising page, the more donations you may get.

Step 3 – Get moving! Whether you prefer to move indoors or outdoors, little and often, or long-distance, as long as you manage the 35 miles before 31st Jan, you’ll have completed something incredible! A tracking app such as Strava can be useful for keeping track of how far you’ve gone (and it integrates with Just Giving too!) You can also track your distance using your Fitbit or Apple watch!

We’ll be behind you all of the way, so if you need anything during your challenge just email us – we’d love to see some pics too if you do choose to take part! 

Your support will make a huge difference to our neonatal families.
You can find out about what we fund here to help you motivate yourself to move!

Record Amount Raised through 35 for 35 Challenge

Tiny Lives Supporters raised an incredible £6005 by taking part in our 35 for 35 challenge!

The challenge saw participants commit to walking, running or cycling 35 miles throughout January.

We’d like to thank each and every one of our supporters, their friends, and family for helping us raise such a wonderful amount. The money raised will help us continue our vital work supporting our neonatal families on Ward 35.

We hope everyone who took part in the challenge enjoyed it and it helped kick-start your 2023!

Tiny Lives Christmas Reunion Returns for 2022

We are thrilled to announce the return of our Christmas Reunion! This year, the date for our 2022 Christmas Reunion is Saturday November 26th, 10:30 – 14:00 at St. James Park, Newcastle.

This event is specially designed for families that spent time on the RVI’s Neonatal Unit! It’s a chance to come together and enjoy an event full of Christmas cheer and catch up with some old faces as well as meet some new ones!

There will be games, food and entertainment and we’ve also heard a rumour that Santa Claus himself might make an appearance…

This event is recommended for children aged 8 and below and tickets cost £10 (suggested donation) for a family (max. 2 adults per family group).

Spaces for Christmas Reunion have now all been allocated. We have set up a waiting list for those families wishing to attend and any spaces will be allocated on a first come first serve basis – https://register.enthuse.com/ps/event/ChristmasReunion2022

We kindly request that you DO NOT buy tickets through anyone offering to sell them. It’s been brought to our attention that there are several scammers claiming to have tickets for sale when this is not the case. For the safety of our families, all tickets and names are checked on entry at the door.

If you are no longer able to attend the reunion, please get in touch with Tiny Lives directly so we can reallocate them to a family on our waiting list.

Many thanks for your cooperation!

Tiny Lives Vacancies


We’re recruiting for Peer Support Volunteers AND our NEW Parent Advisory Group.

Parent Advisory Group (PAG)
Would you like to help Tiny Lives develop the support we provide to families? It is important to us that the support we offer families is directly influenced by the families we support. To help us do this we are setting up a Parent Advisory Group (PAG). We are looking for parents with lived experience of having a baby on the Neonatal Unit or who stayed on Transitional Care for a week or more at the RVI. We are keen to recruit parents who have a wide range of lived experience and backgrounds.

Click Here for more information and to apply for the Parent Advisory Group.

Peer Support Volunteers
We are looking for parents – Mams and Dads – with a wide range of different NICU/TC experiences and backgrounds from full term babies to micro premmies, if your baby was on NICU or you were in Transitional Care for over a week your experience counts. You need to have been discharged home for at least a year and able to commit a minimum of 2 hours a week. We are particularly keen to recruit bilingual peer supporters and those who could be available during the daytime, this could be term time only.

Click Here for more information and to apply for Peer Support Volunteer.

Tiny Lives Summer Raffle

To celebrate Picnic for Preemies and Screen on the Green, we’re holding a picnic themed raffle! We have three great prizes up for grabs donated generously by local businesses Olive & Bean, The Glamorous Owl and Sabai.

First Prize – An Olive & Bean Hamper, including 1x Olive & Bean Voucher*
Second Prize – A Silver Ring Making Workshop with The Glamorous Owl
Third Prize – A £50 Hairdressing from Sabai
Fourth Prize – Two £8 Olive & Bean Vouchers

Raffle Tickets cost £5 per entry and you can purchase your tickets below.

We’d like to thank these incredible local businesses for supporting Tiny Lives and for donating such wonderful prizes.

*The Olive & Bean Hamper must be picked up from the Tiny Lives offices on Newcastle Business Park.

Update on the Butterfly Project

Recently, we spoke with Professor Nick Embleton who updated us on The Butterfly Project and their most recent work.

‘Over the last 15 years Tiny Lives has supported research into the views and experiences of parents whose babies sadly died. This research expanded into further projects focusing on the situation where one baby from a multiple pregnancy (either a twin or triplet) sadly dies, and where one of more babies survived. These parents must somehow cope with the challenge of dealing with the grief and sadness for the baby (or babies) who died, whilst remaining happy and/or hopeful for the surviving baby. The loss of a baby from a multiple pregnancy can happen at any stage, sometimes there is a miscarriage early in the pregnancy, or an unexpected stillbirth of one twin. In some cases, both babies may have been born prematurely and receiving care on the neonatal unit, but one twin dies and the other survives. In this situation, parents must somehow cope with regular contact with the surviving baby on the same unit, whilst worrying about how to deal with the loss of the other twin. Occasionally this happens unexpectedly close to term as in the well-publicised recent case of Cristiano Ronaldo and his partner Georgina.’

‘Our work led us to develop the Butterfly concept, and we now place a Butterfly cot card with the name of the baby who died next to the surviving baby/ies. Using this work, we published academic research babies and created a series of short films with parents and staff talking about their experiences. We are extremely grateful to all those parents who felt able to share their painful experiences, and all the other parents who contributed to our research over the years. More recently, we have created an online learning course for health professionals. This explains the challenges and helps everyone better understand the challenges parents face, and how we can better support them. This course is highly emotional, and many will find it quite challenging. Whilst it is not aimed at parents themselves, or family and friends, we know many parents and families have viewed the course, but we would recommend everyone thinking carefully before viewing such sensitive material. The course is free to view and can be found here.

In the 6 months since the course was launched it has attracted over 600 learners from more than 80 countries worldwide.’

If you would like further information about the course, or research, please contact Tiny Lives who will pass your request to the research team led by Professor Nick Embleton.