‘There is no footprint too small that it does not leave an impact on this world’
It is a sad fact that not every baby on the unit makes it home and on Sunday 1st December (2.30pm) a memorial service will take place at St James Reform Church to remember babies that have sadly passed away at the RVI. This annual service is organised by Women’s Services at Newcastle-upon-Tyne NHS Foundation Trust, and Tiny Lives is proud to support this important occasion.
Whether parents are on the ward, or they are at home, Tiny Lives organises and funds bereavement support to help families through and honour the memory of their baby. Including:
Sibling Support Groups
Siblings Support Group is an informal, supportive group where families who have spent time on Ward 35 with their baby or babies who have sadly died can meet. The group is facilitated by staff from the Neonatal Unit and provides memory making activities for siblings helping them to remember and honour their lost sibling. The group is supported by Tiny Lives and a light lunch is provided. We welcome children of all ages to take part, no matter how long ago their sibling(s) was on the unit.
If you are looking for a parent only support group, please email info@tinylives.org.uk, where we can provide you with information of where these groups are available.
Counselling
The counselling is being offered in partnership with the North East Counselling Service (NECS), and parents can take part in 6 free sessions of individual or couples counselling. The service is self-referred, meaning that the parent does not need a medical referral to benefit from this additional support. Counselling can take place in person at NECS offices or virtually – whatever best suits you.
On Unit Bereavement Fund
We operate a dedicated fund for the Neonatal Unit Bereavement Team, which can be used for a variety of items to help support parents through the bereavement process, and to help honour the baby’s passing with the utmost respect. These include baby bath products and hooded towels so that parents can have the experience of giving their child a bath, material which is then crafted into burial gowns suitable for smaller babies, and more.
Heart in their Hands Keyrings
These keyrings are a precious keepsake for bereaved parents. They come in two parts, a removable heart charm and a circular keyring. The heart is kept with the baby after they have sadly passed, and the keyring is kept by the parent, symbolising that their little one will always have a piece of their heart. We also supply a twin version of the keepsake, with two removeable charms.
Memory Boxes
When you’ve lost a baby, there’s nothing more precious than the memories you have with them. We help to fund memory boxes for the Neonatal Unit, which are filled with items such as their baby’s admission bracelet, their Miniboo, neonatal dummy and sometimes clothing or a lock of hair – anything that will help parents to remember their little one.
Digital Cameras and Photos
We supply the Ward 35 Bereavement Team with high-quality digital cameras, complete with memory cards and accessories, in order to let parents take priceless photos in the time they have with their little one. We also pay for these pictures to be confidentially processed and delivered to parents as soon as possible.
Books for Bereaved Siblings
When a family loses a baby, it can often be a huge and emotional challenge to explain this loss to a sibling, especially if they’re younger. To help with this we fund a special book for siblings that parents can use to help support them through this difficult conversation.
If you or a loved one needs support, we are here for you. Please info@tinylives.org.uk, where we can provide you with the best information for you.
We’ve had the first snow of the winter and we’re getting into the Christmas spirit here at Tiny Lives! With the festive season just around the corner, we wanted to share what we have coming up over the next few weeks and how you can support babies and their families over the holidays.
Christmas can be a difficult time for families spending time on the unit, those celebrating first Christmas and for parents whose babies are no longer with us. Our festive fundraising activities and events allow us to support babies and families during their time on the unit, and post discharge all year round.
First off, we want to say big thank you to the team at Trinity Square, Gateshead who invited Tiny Lives to be part of their incredible Christmas light switch on event on Thursday 21 November. The support we have received from the whole team at Trinity Square over the years is amazing. They are always thinking of new ways to continue their support to Tiny Lives; if they have any family activities going on in the square, they always try to involve Tiny Lives, which we are very grateful for!
Here are just some of the way you can get involved with Tiny Lives this Christmas…
Order your Tiny Lives Christmas Decorations
We’ve got lovely Tiny Lives Wooden Christmas Decorations kindly provided by Ryder Architecture! These gorgeous decorations cost £5 each and are a wonderful way to show your support families on the neonatal unit this Christmas In order for decorations to arrive in time for Christmas, the checkout will close on Sunday 11th December.
We’re very excited that Santa himself has agreed to write and post personalised letters to our Tiny Lives supporters again this year. These letters are a perfect way for ALL families to help support premature and sick babies and families on the RVI Neonatal Unit. You don’t have to have spent time on the Unit to order some, they’re available to everyone! Each letter is personalised for each child.
We suggest a £5 or £10 donation per letter (you can choose at the checkout), which includes postage costs – although anything you can give will be very much appreciated. The funds raised from the sale of these letters will go a long way to supporting families on the RVI Neonatal Unit through this festive period and beyond. Closing date to ask Santa for your personalised letter is Thursday 12th Dec and letters from Santa will begin arriving w/c 2nd Dec.
We need to raise a minimum of £580,000 to continue our work every year and we simply couldn’t do this without our wonderful fundraisers! We are incredibly proud of everyone who chooses to raise money for us, their dedication and enthusiasm is simply inspiring.
This Christmas why not organise a festive event – we will even help you with fundraising ideas and setting up a fundraising page. It could a Christmas coffee morning, or a Christmas jumper day!
Find your stocking fillers on the Tiny Lives online shop
Forget Black Friday and Cyber Monday, the Tiny Lives online shop has loads of gift ideas from travel mugs, hats and hoodies for grown up to bibs and teddies for little ones. The best thing is that all of the money raised from sales on our online shop goes straight back into the charity and will allow us to achieve our vision to support even more babies and parents in 2025 and beyond.
Along with a great range of Tiny Lives merch, our online shop also gives you the chance to give a virtual gift to a loved one. By purchasing a virtual gift you are supporting families as they navigate the neonatal journey. This gift represents the typical cost of supporting a neonatal family with a Parent Pack when their baby is admitted to the Neonatal Unit. Our virtual gifts are real examples of the ways in which Tiny Lives supports the babies and families of Newcastle’s RVI Neonatal Unit and we will ensure that your donation will go towards where the babies and families need it most. You will receive an instant downloadable gift that you can print or email to the recipient.
Donate your spare Christmas gifts
While we know it’s the thought that counts, sometimes you end up with some prezzies that you are just never going to use. To save those extra bubble bath sets, boxes of choccies or ‘interesting’ jumpers going to waste or gathering dust, we’d love to take them off your hands. Instead of letting your prezzie gather dust, regift them to Tiny Lives and we’ll make sure they go to a good home. We can use your generously donated Christmas gifts as great raffle and tombola prizes throughout the year, helping to raise money for premature babies and their families on the RVI Neonatal Unit.
If you’d like to donate, please call 0191 230 2112 or email info@tinylives.org.uk to arrange a drop-off at our office. We may also be able to pick up larger amounts – just let us know.
Make a donation
Do something amazing this Christmas and make a donation to Tiny Lives!
Globally, 1 in 10 babies is born prematurely and on Sunday 17 November we marked World Prematurity Day here in the North East.
Landmarks around the world lit up purple to raise awareness and honour babies and families who have experienced premature birth, including the Tyne Bridge and Millenium Bridge right here in Newcastle. Seeing our iconic bridges across the Tyne turn purple with Tiny Lives families and supporters was a beautiful moment, we at Tiny Lives made sure there was plenty of cakes and goodies for the families and staff back on the unit to enjoy on the day too.
This year a group of nurses from Ward 35 got together a special World Prematurity Day pack for families, including chocolate, candles and handmade keepsakes to mark to day.
World Prematurity Day brings global attention to the significant impact of premature birth, which affects 1 in 10 babies worldwide. In celebration and support of those born prematurely and their families, schools and groups across the North East are also taking on the 10 for Prem challenge this month – walking, running or cycling 10km throughout November to raise money to support our work here at Tiny Lives. You’re all our Ten for Prem heroes!
‘Take on 10 for Prem’ is an easy, ten-minute online workout designed to get children and their friends active while raising awareness and educating young minds on the challenges and stories of premature birth while raising vital funds for Tiny Lives.
As well as being loads of fun, ‘Take on 10 for Prem’ is also an important way to teach children about important health issues while encouraging physical activity and team work – all key parts of children’s learning and development.
Rachel Hardwick, fundraising and engagement manager said ‘World Prematurity Day is a significant day for families who are currently spending time on the unit and those who have navigated the experience of having a baby be born early in the past. Spending time on the unit when a new arrival is born early is a very scary time for parents and although every neonatal journey is different, we want families to know that they are not alone. At Tiny Lives we’re committed to supporting premature babies and their families by providing equipment, support and other items to make the journey a little bit easier, on World Prematurity Day, and every day.
“Without the generosity of our supporters, including everyone taking part in 10 for Prem, we wouldn’t be able to provide the vital equipment and support that families are in need of all year round. Thank you!”
If you would like to donate and help us continue our work, please click here.
The Tiny Lives 2024 Charity Ball took place on Saturday 5th October 2024 at the Hilton Hotel on the Newcastle Gateshead Quayside. Our guests stepped into the world of Willy Wonka’s Chocolate Factory, raising just under £27,000 to support sick and premature babies and their families across the North East and Cumbria.
The wonderful Pete Graves returned to host the evening and live music was provided by local heroes Aukestra who had the dancefloor full from the very first song!
Louise Carroll, Community and Events Fundraiser here at Tiny Lives said, “Our annual charity ball is an event that we look forward to every year, it’s one of our biggest fundraising events of the year and it’s a chance to celebrate the hard work of the team on the Neonatal Unit at the RVI and to show our wonderful supporters how we continue to support the families and babies going through the neonatal journey. It’s also a chance to bring our fantastic community together for a fun-filled evening. I want to extend an enormous thank you from everyone at Tiny Lives, it really was a night to remember! And it only happened because of our amazing supporters and sponsors”
Our sponsors and supporters on the evening only make this possible and we want to say huge thank you to:
We also wanted to extend a big thank you to Sue Comb who has kindly made all our table centre pieces for the last 5 years at no costs to the charity. The SK Dance School of Performing Arts and West End Prep Musical Theatre for entertaining our guests through the drink’s reception and during the evening, and not forgetting all the individual supporters who donated prizes for the evening, your kindness has helped to raise thousands of pounds to support babies and families spending time on the neonatal unit.
We hope that you all enjoyed the evening just as much as we did, we’re already excited for 2025! See you there.
We are thrilled to announce the return of our Christmas Reunion! This year’s event will take place on:
Saturday November 30th 10:30 – 14:00 Kingston Park Stadium (home of the Newcastle Falcons Rugby team).
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! It’s only thanks to our kind supporters that events like this are possible. 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. Tickets are free (max. 2 adults per family group) however, if you are able to make a suggested donation of £10 to help Tiny Lives to support more neonatal families and put on more events like this, we would be very grateful .
Children’s food and drink is provided with tickets, there are unfortunately no meals or alcoholic drinks available for adults, although tea, coffee, soft drinks and snacks are available to purchase from the venue.
TINY LIVES TRUST, a charity dedicated to supporting premature and sick newborn babies, has announced its new five-year strategy allowing the team to help even more families during the most difficult times across the North East and North Cumbria.
The strategy, which is the result of months of collaboration and consultation with families, supporters, staff, and board members, outlines three key impact goals for the coming five years. These goals include a focus on supporting babies and families to flourish during the first 1,001 days and beyond, ensuring that babies and families with experience of neonatal care are understood and supported by those providing services, and championing neonatal care as a key driver of positive health and social outcomes in the North East and North Cumbria.
Every year one in seven babies will spend time in neonatal care and in the North East alone, 190,000 babies, children, and young people across the North East live below the poverty line.
Kelly Blakeney, Chief Executive Officer at Tiny Lives Trust said, “Recently Tiny Lives celebrated our 10th anniversary as an independent charity and over this time we have helped thousands of families during the most difficult of times.
“Today we are launching our new five-year strategy that will allow us to give even more sick and premature babies in the North East and North Cumbria the best possible opportunity to thrive. Families are at the heart of everything that we do and our future focus will see us deepening our relationship with the Royal Victoria Infirmary (RVI) hospital, as well as working to support even more families, including those families who are currently underrepresented within our service. The first 1,001 days, from conception to age two, are fundamental to a child’s lifelong emotional and physical wellbeing and we want to play a defining role in supporting premature and sick newborn babies and their families during this critical period.
“Our heartland is the Newcastle Neonatal Service at the RVI in Newcastle Upon Tyne. As a regional centre of excellence, the RVI plays a unique role in caring for babies with the most complex needs. Over time, the RVI’s reach has extended across the North East and North Cumbria, allowing us to expand our services and support more families. Wider developments across maternity services have also provided an important policy focus.
Yet we know we can go further to support families cared for at the Newcastle Neonatal Service. We also know that many more families across the North East and North Cumbria need support throughout their neonatal journey.
This strategy is the result of months of collaboration and consultation with families, supporters, staff, and board members and reflects what we want to achieve, how we will prioritise our activities and resources, and how we will know if it’s working.”
With eight out of the 10 local authorities in the UK with the highest rates of child poverty in the North East and Cumbria, the support that Tiny Lives Trust provides to families spending time on the neonatal ward is needed more than ever.
Download the Tiny Lives Trust five-year strategy here.
Watch a video from the charity discussing the need for this revived focus here
Today is #InternationalDayOfCharity but every day we are blown away by the dedication of individuals and organisations in the North East who lend their time and expertise to raise money to support the work we do here at Tiny Lives. From plant sales to Tough Mudder challenges and FUNdraising weeks, the creativity of our supporters never ceases to amaze us.
Rachel Hardwick, Fundraising and Engagement Manager at Tiny Lives said, “Every penny that our amazing fundraisers donate goes towards supporting premature and poorly babies and their families from the moment they are admitted to the ward all the way through to post-discharge support. We’re always blown away by the creativity and time that our supporters put into their fundraising activities and love seeing pics of everyone’s achievements.”
Here are just some of the amazing people who have been fundraising recently…
Winn Group – Tough Mudder 2024
13 members of the Winn Group team took on Tough Mudder this summer in aid of Tiny Lives. Winn Group has chosen Tiny Lives as its charity of the year, and as part of that, they took on the notoriously difficult Yorkshire course together, raising an amazing £3094 for neonatal families here in the region. Ross Jackson, Winn Group CSR Team Member said, “It’s great to announce our chosen charity for the current financial year. Tiny Lives does incredible work in the toughest times for families dealing with a difficult start to life for a little one. “We’re kicking off our fundraising for the cause by taking on the entertainment sponsorship for their charity ball later in the year, as well as entering a team in the Tough Mudder event this summer. Credit to our colleagues who took part. I certainly wouldn’t fancy some of those obstacles, but never mind the 10-mile run-in-between! “This is the first of several events across the year that we will deliver to our staff as they fundraise for this worthy cause.”
Jackie Pucci and Hylton Castle Working Men’s Club
Jackie and everyone at Hylton Castle Working Men’s Club raised an incredible £12,837 for Tiny Lives through their fundraising efforts. Jackie’s granddaughter, Mia, spent time on the unit when she was born, and we were thrilled to receive the cheque from Mia and her younger brother Theo. Their dedication and commitment has made a big difference to babies and families spending time on Ward 35.
Tom, Grace, and the Gosforth Allotment Crew
Tom, Grace, and the Gosforth Allotment Crew raised over £1000 to support premature and sick babies and their families by kindly growing and selling delicious veg on the allotment. The group has supported Tiny Lives for over five years now and we also want to say thank you to Plants Plus who donated a range of plants to sell on the stand too!
Richard Coats Primary School
Richard Coats Primary School chose Tiny Lives as their charity of the week and the whole school got involved with activities throughout the week to raise funds to support our work! Our Louise went to speak at the school assembly at the start of the week to share more information about everything we do to support babies and parents spending time on the neonatal unit. They raised an amazing £727 for Tiny Lives and we couldn’t be more grateful.
If you have a fundraising idea for Tiny Lives we would love to hear from you! Contact louise@tinylives.org.uk or call 0191 230 2112.
A Tiny Lives-funded project focused on ‘Lactation after Loss’ has been launched for NHS staff.
Recently we funded ‘Lactation after Loss’, a free online eLearning course designed to support RVI staff to better support bereaved parents following baby loss, specifically the management of lactation and we are over the moon that this project is now live and available for medical professionals to use.
‘Lactation After Loss: Choices for Bereaved Parents’ is a free, high-quality, endorsed e-learning for NHS staff to explore critical concepts surrounding lactation following baby loss, from the physiological processes to the practical options available for families. It is here to:
Support mothers in the face of loss with actionable lactation guidance
Understand the impact of baby loss, from lactation physiology to breast milk donation options
Guide mothers with compassion through sensitive discussions to find supportive lactation solutions
As a charity, we are committed to funding research to further support better health outcomes for premature and poorly babies and their families in the North East and North Cumbria. This is just part of our extended service to allow us to support more families as they navigate their unique version of the neonatal journey.
The project was led by, Nicholas Embleton Professor of Neonatal Medicine with over 25 year’s experience in a large NICU, including research programmes in neonatal nutrition & work with parents
In a video speaking about the project, Prof. Nicholas Embleton said, “I only found out about the idea of lactation after baby loss only around two or three years ago and when I first heard about it I was a bit surprised or confused, I had never really thought about it if I am honest. Over my career, I must have sadly looked after hundreds of families who had babies who died and I hadn’t stopped to think about the choices that women have to make when their baby died. Even though I don’t look after women who have had a stillbirth, as I’m a neonatologist, not an obstetrician, I hadn’t stopped to think about how women might want to make choices that are different from the standard offer of just taking drugs to suppress lactation.
You can watch Prof. Nicholas Embleton discuss the project in more detail here.
If you would like to find out more about the kinds of projects we fund and how you can support our work please email info@tinylives.org.uk or call 0191 230 2112.
When you arrive on the ward with your baby it can feel overwhelming to suddenly hear lots of new words and phrases that you have never come across before.
Remember that no question is a silly question and it is absolutely ok to ask staff on the unit to clarify what certain terminology means so you can feel as empowered as possible in the care of your new arrival, everyone is there to support you caring for your baby. The Tiny Lives team is with you every step of your journey we may not know all the answers, but we can help you find out. As part of that support, every mam and dad that arrives on the unit receives a parent pack which is full of useful bits and pieces to help make the initial transition to the Neonatal Unit a little easier, including a notebook and pen so you can jot down any questions you might have or make a note of specialist words or medical terms relating to your specific situation. Some of the words may sound scary when you first hear them, but to ease some of the anxiety that parents may be feeling, we wanted to put together a handy guide of just some of the things that you might hear when you are spending time on the neonatal unit.
Apnoea An apnoea is a pause in breathing. This is common in preterm babies as they have to learn to control their breathing but can happen in term babies too if they are unwell.
Anaemia A low number of red blood cells which carry oxygen around the body.
Blood gas This is a type of blood test taken by a heel prick or special catheter already in the baby which tells the medical team how well the lungs are working. It can help doctors and nurses know whether to offer or adjust breathing support.
Bradycardia or ‘brady’ This is a different way of talking about a slow heart rate.
Breathing tube or Endotracheal Tube / ET Tube This is a soft plastic tube that goes in the windpipe (also referred to as ‘trachea’) to connect the baby to the ventilator. It usually goes through the mouth but you might see it through the nose sometimes. When this breathing tube is put in it is called ‘intubation’ and ‘extubation’ is the process of taking the tube out if they are ready to come off the ventilator.
Central Line / Peripherally Inserted Central Catheter (PICC) line This is a thin tube (sometimes called a catheter) that is placed into a vein to help with feeding, and giving fluids or medicine to your baby.
CT scan A special type of X-ray that uses a computer to take pictures of different parts of the body. CT scans can be used to get a detailed image of your baby’s brain so doctors can understand how they are developing.
Congenital This means something that your baby has been born with or is present at birth, for example, ‘congenital heart disease’.
Culture A sample of blood, urine, or other bodily fluid that is collected to be tested in the lab. This helps the medical team decide on the best medicine or support for your baby.
Desat This is when the baby’s oxygen drops lower than the medical team would like.
High-frequency oscillating ventilators You might also hear these called oscillators or HFOVs. This type of ventilator blows small amounts of air into a baby’s lungs very quickly so they are gently ‘wobbling’. When you first see this it can look a little odd so ask the nurses if you have any questions. With this type of ventilator, your baby can still take normal breaths if they wish.
Kangaroo Care We love Kangaroo Care at Tiny Lives! It refers to skin-to-skin contact which is a great way to promote bonding with your new addition, helps soothe baby, helps stabilise the baby’s oxygen levels, mams and dads are encouraged to do Kanagaroo Care but for mams it also can encourage breast milk production, it is a very important part of the Neonatal experience.
Low flow Low flow provides a small amount of oxygen directly to your baby through small prongs in their nose with no machine to help the ‘work’ or breathing. Some babies, especially pre-term babies, may go home with low-flow oxygen. Other babies may need a sort of machine to help – these are called CPAP and High Flow. A CPAP machine helps keep baby’s lungs inflated and makes breathing easier as they take all their own breaths while a High Flow machine provides warm, moist air to baby through soft prongs in their nose, giving a small amount of pressure to make breathing easier.
Meconium A medical term for the first poo that a baby does! Meconium is thick, sticky, and dark green to black in colour, this is nothing to worry about.
Nitric oxide This is added to the ventilator to help babies who need a lot of oxygen. It helps to relax the blood vessels in the lungs to help blood flow into the lungs and pick up oxygen.
Oxygen Some babies can do all of the ‘work’ of breathing but need extra oxygen added to the air they breathe.
Saturations or Sats This tells the medical team how much oxygen is in a baby’s blood. You’ll see it being measured by a special probe in the hand or foot. Monitoring this helps the team understand how much oxygen to give. You might hear beeping from this machine – this can happen if your little one is moving around, even when oxygen is at the correct level.
Ultrasound An ultrasound is used to take pictures of organs like the brain, kidney, and heart. It isn’t painful and uses very fast sound waves to get the image of the area that doctors need to see.
Ventilators This machine gently blows air into your baby’s lungs through a tube in their nose or mouth, inflating their lungs to make breathing easier. This can be adjusted so your baby is getting exactly what they need.
If there are any words and phrases that you would have found helpful to know before you spent time on the neonatal unit please do let us know either via direct message on social media or by email at info@tinylives.org.uk
World Prematurity Day is taking place on November 17th, 2024 and this year we are inviting schools, clubs, and community groups to participate in a special challenge…
World Prematurity Day brings global attention to the significant impact of premature birth, which affects 1 in 10 babies worldwide. In celebration and support of those born prematurely and their families, Tiny Lives is launching an exciting new initiative – ‘Take on 10 for Prem!’
‘Take on 10 for Prem’ is an easy, ten-minute online workout designed to get children and their friends active while raising awareness and educating young minds on the challenges and stories of premature birth while raising vital funds for Tiny Lives.
As well as being loads of fun, ‘Take on 10 for Prem’ is also an important way to teach children about important health issues while encouraging physical activity and team work – all key parts of children’s learning and development. Registration now is open for schools and groups here and we’ve even created a downloadable toolkit so you can spread the word to family and friends about why you’re taking part in the challenge.
Rachel Hardwick, Fundraising and Engagement Manager said, “Here at Tiny Lives we want all premature and sick newborn babies and their families living in the North East & North Cumbria to have the best possible chance to thrive, and if your school or group ‘Take on 10 for Prem’ you can help us do this. We would be thrilled to have you and your friends and family on board, making a difference and celebrating the strength and resilience of those born prematurely. As well as raising vital funds for the neonatal community from the North East and North Cumbria.
“Individuals and groups are invited to join in the online workout at a time that suits them in the lead up to World Prematurity Day and every group that takes part will receive a certificate to celebrate their achievement, and every individual will get a sticker to take home to show they took part in the event.
We would be thrilled to have you on board, making a difference and celebrating the strength and resilience of those born prematurely. As well as raising vital funds for the neonatal community from the North East and North Cumbria.”
To find out more about ‘Take on 10 for Prem’ and receive your downloadable fundraising tool kit please get in touch with Louise at louise@tinylives.org.uk or call 0191 230 2112. Or you can sign up here
