Author Archives: Amy Patterson
The Tiny Lives Trust has funded story books to encourage parents to read to their premature and sick babies on the RVI Neonatal Unit (Ward 35).
The COVID-19 Lockdown and subsequent restrictions have been especially tough on parents who have a baby on the Neonatal Unit. These babies – some born as early as 23 weeks gestation – require specialist care, often for weeks or even months. Parents generally are limited on how much they can handle and cuddle their baby until they are stronger, meaning that they have to rely more heavily on other methods for bonding with their new addition, such as gentle touch within the incubator, talking, singing, and reading.
The new Tiny Lives-funded books have recently been added to the Ward and are already proving a hit with parents such as Lewis from Birtley (pictured), who has enjoyed reading to his son Thomas (born at 28 weeks and 3 days gestation). Books are given to parents individually and sanitised, before being kept in the baby’s incubator or cot on the Unit.
Louise Carroll, Community and Events Fundraiser at Tiny Lives said: “Now that face coverings are commonplace for parents on Ward 35, some have expressed worries to the Unit staff about the additional impact this may have on connecting with their new baby. Reading to a baby and letting them hear your voice is such a powerful form of bonding. By providing these books, we at Tiny Lives hope to make it easier for parents to read to their new baby, helping to strengthen those all-important bonds in really tough circumstances.”
Find out more about what we fund on the RVI Neonatal Unit.
We’re delighted to be taking part in The Great Northern Raffle, which is running all throughout September! It’s a brand new fundraising tool for local charities, with some great prizes up for grabs. Entry is free, with a suggested voluntary donation of £5. By donating with your entry, you can support Tiny Lives and have a chance at winning some fab prizes. You just need to text TINYLIVES to 70085 (normal network charges apply!). September’s prizes include:
- 3-nights off peak cottage break in Seahouses that sleeps six people (and two well behaved dogs!) Kindly donated by Accentuate North East
- Three course dinner for two at Redworth Hall, Newton Aycliffe. Kindly donated by Redworth Hall Hotel
- A £50 online voucher from Pink Boutique, kindly donated by Pink Boutique
Headline Prize -Herring Masters Cottage
Redworth Hall – 3 Course Dinner
Crafters Companion Hamper
Malmaison Newcastle – Overnight stay
Pink Boutique – £50 Voucher
Occupational Therapy takes a ‘whole-person approach’ to both mental and physical health and wellbeing and enables individuals to achieve their full potential’ (Royal College of Occupational Therapists, 2019).
My name is Alice Gair. I am thrilled to have recently joined the Allied Health Professional (AHP) Team on the Unit following maternity leave. My background is in community children’s OT, with a speciality in sensory processing and integration, I am also project lead for our community service development The Sensational Thinking Project © and one of NHS England’s Clinical Entrepreneurs. I have extensive hands on experience working with children from birth to 19 years of age with a number of diagnosis and medical backgrounds, including those that were born prematurely.
My experience in community has afforded me the opportunity to recognise first-hand the impact of early follow up and intervention on long term development, so I am very excited to bring this perspective to the unit. I am looking forward to using my specialism in sensory integration to enhance the healing environment for both you and your baby, as well as working on bridging the gap to support you on the often tricky transition from the unit to home through follow up care, and promoting the parent/carer occupation in caring for your baby.
Recognising the reciprocal nature of physical and mental health and how we need to nurture this to promote the best outcomes for your baby and the family unit is fundamental to our professional values and standards of practice.
What does an Occupational Therapist do on the Unit?
In the specialist area of Neonatal Care the Occupational Therapist’s (OT) role is to support the development of your baby and your emotional wellbeing as a family unit. We aim to achieve this through neuro-behavioural, neurodevelopmental and sensory assessment, facilitating family centred developmentally supportive care, empowering you in your occupations and engagement on the unit and in the transition home to lessen the incidence of long-term developmental concerns (British Association of Perinatal Medicine, 2010). Basically, we are taking a preventative role in your baby’s care and want to support you in positive caring activities with your baby so that as a family you can live independent and fulfilling lives. You can spot us wearing the green trousers!
Having a baby on a Neonatal Unit can be very difficult for families at any time. Through conversations with parents and staff on Ward 35, we know that COVID-19 has presented additional, unique challenges for families, on top of the usual issues and stress.
We are keen to gain a deeper insight into the impact that COVID-19 is having on families who are currently on the Neonatal Unit, or who have recently spent time on RVI Ward 35. This will help us to shape the support we can offer to families in these trying times.
This survey is open to anyone who has spent time on the RVI Neonatal Unit within the last 2 years, so we would be very grateful if you could let us know your thoughts: https://www.surveymonkey.co.uk/r/QZ2NRN9
Here at Tiny Lives, we know how hard it is for parents at the moment, especially those who have just been discharged home from Ward 35 and are unable to attend any of the usual baby groups.
To help tackle this issue, Tiny Lives has funded The Baby Hub Gateshead to deliver a term of their award winning M+Ms (Music, Movement and Sensory) classes throughout August, exclusively for Ward 35 babies! Classes are suitable for babies from 6 weeks to 12 months, and will be online weekly from 10th August, so you can join in from the comfort of your own home at a time suitable for you and your baby.
Classes feature a mix of singing, music, action songs and themed sensory fun, adapted for online participation. Each week there will be a theme such as Farm, Garden and Weather. All you’ll need is to have is either a smart phone, tablet, PC, laptop or smart TV to watch the video link.
Every Monday, a new video will be uploaded for the week to the Baby Hub’s private Tiny Lives M+Ms Facebook group. This means you can watch your class whenever suits you and will be able to pause or return to it at any time during the 4 week term.
Places are limited so if you would like to join please email firstname.lastname@example.org
The webinar is aimed at medical professionals and will be taking place in September (exact date TBC). The webinar will focus on the scenario of a baby born in the region who has an undiagnosed congenital heart defect and will discuss the whole process of caring for that baby.
The organisers of the webinar are keen to ensure that the parent voice is heard in this session, and so are looking for a short story from a parent regarding their whole experience; from delivery of the baby to eventual treatment at Newcastle’s Freeman Hospital. The organisers are looking for a parent with a baby who:
- Was born with an undiagnosed congenital heart defect.
- Was born in the North East or North Cumbria
- Was eventually treated (or is undergoing ongoing treatment) at the Freeman Hospital in Newcastle-upon-Tyne.
The organisers understand that this is an sensitive and emotional topic, so will be there to support you in telling your story.
To volunteer, or for more information, please email email@example.com.
The Great North Run as we know it may have been cancelled, but you can still take part in a unique GNR experience in 2020 – and raise funds for Tiny Lives!
The Great Run company have developed a ‘Virtual Great North Run’, meaning that more people than ever can take part. It may not be exactly the real thing, but you can still complete an amazing personal challenge, enjoy getting fit and raise vital funds to support vulnerable premature and sick babies and their families.
“Great North Run Reimagined is a virtual running campaign, created to provide you with a Great North Run experience to remember. We’re thinking outside the box to recreate an experience as close as possible to the real event.” – The Great Run Company
To get involved you need to download the app for the Run and sign up. You’ll also be prompted to set up a JustGiving page to enable you to fundraise from your run.
Sign up here: https://www.greatrun.org/great-north-run/gnr-reimagined
Meet the Doctor – April 2020
Thank you to everyone who submitted a question for this Meet the Doctor session! We regret that we can’t answer all of your questions, especially if it was very specific or about an individual case, but we have done our best to pull together some info for our FAQs below.
As always, we would always recommend you call your healthcare professional directly if you are in any doubt at all or have any questions about your baby.
Download FAQs and answers here.
Tiny Lives is joining forces with the rest of the UK’s charities to encourage supporters to take part in The 2.6 challenge, from Sunday 26th April – Thursday 30th April, to raise vital funds.
Charities including Tiny Lives are suffering the impact of cancelled events and fundraisers due to the COVID-19 outbreak. It’s a strange time for everyone right now, but if you and your family could spare as little as 2.6 minutes to take part in this challenge, you could raise vital funds for premature and sick babies and their families – and make a huge, positive difference to your community.
Absolutely anyone can take part! All you need to do is dream up an activity based around the numbers 2.6 or 26 that suits your skills and complete it on Sunday April 26 – when the 40th London Marathon would have taken place – or by April 30th.
This could be something as simple as pledging to run or ride 2.6 miles as your daily exercise, holding the plank for 2.6 minutes, to gardening for 26 minutes. We’ve come up with some ideas for you below, but we’d anything goes! As long as it fits the 2.6/26/260 theme then it’s a winner!
Remember, your activity must stick to Government social distancing guidelines too. Why not try:
- Getting the kids involved for a 2.6km toddle
- Break out your inner football star and complete 26 keepie uppies (bonus points for whoever does them the fastest!)
- Sweat through a 26 mile row (on a rowing machine)
- Run 2.6km as your daily exercise – in fancy dress if you’re feeling brave!
- Grab your paints and involve the whole family in a 2.6 hour paint-a-thon- what masterpiece can you create in that time?
- Plank for 2.6 minutes a day for the 4 days.
- Read 26 books to your little one in a readathon
- Have a 26 hour sponsored silence
- Bake 26 cupcakes and donate for each one you scoff!
- Do 26 laps of your garden (inspired by Captain Tom!)
- Do 26 squats a day (even more impressive if you do it with a baby sling)
- Do 26 hops, skips, pogos or spacehopper lengths of the garden
Once you have chosen your challenge, all you need to do is:
- Follow this link. Once it loads, you should see something like this:
- You can either choose to fundraise and ask for donations, or you can simply complete your task as a personal challenge and donate. We suggest a donation of £26 per personal challenge, but anything you can give will make such a huge difference.
- Complete your challenge between 26th – 30th April. Make sure to take some pics and share them with us on our social channels using #2point6forTinyLives!
- Spread the word! You might inspire lots more families to complete their own challenges and so raise even MORE for Tiny Lives.
Please see below a message from ICHOM:
The International Consortium for Health Outcomes Measurement (ICHOM) formed a Working Group to identify a minimum set of measures to be implemented in clinical practice for the care of preterm and hospitalized newborn patients regardless of any specific condition or diagnosis.
We’re excited to announce that the Outcome Validation Survey for this work has been opened. If you’re interested in influencing better quality care for children, please provide us with your feedback!
We are seeking feedback from parents and caregivers on the relevance and acceptability of a draft minimum set of health care measures.
Participate in the Preterm and Hospitalized Newborn Patient Validation Survey here.
If you have any questions about the study or the survey, please contact the researcher directly by emailing Nick Sillett at firstname.lastname@example.org.