As Head of Training for Tiny Tickers, my focus is mainly on delivering training to sonographers and other health professionals that provide obstetric scans. The aim of this is to give health professionals the confidence, knowledge and skills to better spot heart defects during pregnancy screening thus improving the antenatal detection rate of Congenital Heart Disease. The training focuses upon the normal fetal heart, it’s structure and circulatory system and the views to be obtained at the 20-week anatomy scan. We also touch upon some of the more common cardiac anomalies and how to recognise them.
Sonographers are often curious about what happens to these babies once they are born. In fact, most often, once the patient has been referred by the sonographer to the specialist cardiac team, the sonographer never gets to find out about that patient’s journey or the outcome.
At Tiny Tickers we also support cardiac nurse specialists. From the cardiac liaison nurse specialists who attend the antenatal diagnosis appointments through to the cardiac nurses caring for these children and their families on the wards and afterwards. These conditions often mean that the children and their families require lifelong follow-up and the cardiac team build good relationships with the families they care for.
With this in mind, I decided to create a series of condition specific webinars for UK health professionals.
They cover the incidence of the anomaly, the cause and any associations, the anatomical abnormality, and how a diagnosis can be made either in the antenatal or the postnatal period. They go on to examine the signs and symptoms, the different treatments and surgeries available, and the prognosis.
We have teamed up with Gill McBurney, a cardiac liaison nurse specialist who will be delivering these webinars with us.
They will be live presentations with the opportunity to ask any questions at the end of the session. To sign up for the dates below click here. Please note that you must use your NHS professional email address as these webinars are for UK health professionals only.
15th March; 6.30pm – Tetralogy of Fallot
26th April: 6.30pm – Transposition of the Great Arteries
We welcome all sonographers, cardiac nurses and doctors who wish to know more about specific conditions or just have a refresher and get to connect with our little charity.
On the 17th February 2021, hundreds of charities, including Tiny Tickers, will take to social media to back the Right Now Campaign and call on the government to create an Emergency Support Fund for the third sector.
Right now, charities are doing everything they can to make a difference, but resources are running out and people and causes are suffering. We join the call on the government to create an Emergency Support Fund.
During the coronavirus pandemic, there has been no let-up in our cause. Just as many babies have been born with poorly hearts, fighting for their lives against the dangerous, unrelenting and indiscriminate foe that is congenital heart disease, but now in the added context of the global pandemic. And that fight has been made harder – heart services have been severely reduced; families have faced the most difficult situations without the physical support of loved ones. Tiny Tickers has never been more needed.
The immediate response to coronavirus is only the start. People across the country know that charities like ours are Never More Needed right now, and for the foreseeable future.
During the last weeks and months there has been much greater demand for the work we do – more families needing support, more work to ensure that prenatal detection rates stay constant and do not drop. We want to carry on making a positive difference because we’re #NeverMoreNeeded than right now.
As a country, what we do and how we allocate resources as we move, hopefully, to recovery will only be effective if we include the people, problems and places that are often overlooked. The work charities like ours do – and our relationships with our beneficiaries – shows we must strive to meet everyone’s needs and rights, now more than ever.
We’re backing the #RightNow campaign because, like many other charities, we know the work we do helps change people’s lives, and our community, for the better.
Our CEO, Jon Arnold, has already signed the open letter, calling on the government to set up an Emergency Support Fund and urges others to do so too. You can read his blog about the #RightNow campaign here.
Tiny Tickers’ Chair of Trustees, Paul Schofield, says, “We are all very well aware of the toll the pandemic has taken on much of society over the last year or so, creating or amplifying extreme financial, physical or emotional hardship for many across the country. Often it is left to the charity sector to take up the strain when no one else can. But this usually vibrant sector is also under very significant financial pressure and the future of many vital charities hangs in the balance.
But still we, like others, worry about the sustainability of this funding over the medium term and hence I fully support the call for more assistance to prevent the additional burden of the pandemic weighing down most on already disadvantaged shoulders.”
Find out more about how you can support the #RightNow campaign here and follow Tiny Tickers on Twitter @tinytickers
On the 17th February 2021, hundreds of charities, including Tiny Tickers, are backing the Right Now #nevermoreneeded Campaign and calling on the government to create an Emergency Support Fund for the third sector.
Right now, charities are doing everything they can to make a difference, but resources are running out and people and causes are suffering. We join the call on the government to create an Emergency Support Fund.
By Katie Lawson, Head of Fundraising & Communications, Tiny Tickers
We know that the world looks a bit different at the moment, and that a lot has changed. Not being able to meet in real life has changed many aspects of our lives.
Here Katie, our Head of Fundraising and Comms, talks about some other ideas if your fundraising plans have been postponed or cancelled. All of these can be done from home, and from the comfort of your sofa!
So things have changed. And also they’ve not changed at the same time. I still spend a lot of time staring at a screen (too much some would say) and we at Tiny Tickers are still working hard to deliver services to support tiny hearts, their families and the NHS heroes who look after and care for them.
One thing that has hugely changed is the fundraising landscape. The bake sales, collecting tins, sponsored events can’t take place at the moment – and so people have had to get creative. But did you know that there are many ways to support your favourite charity (that’s us by the way) without leaving your home, or lifting your wallet – just stay on the sofa, with your jammies on and get going.
Here are 5 of the easiest ways to support us whilst keeping warm and cosy:
Use easy fundraising. EasyFundraising is a cashback site that donates money to charity every time you shop. Your online shopping experience won’t change. Just follow this link and carry on your shopping as normal! It really is easy fundraising… https://www.easyfundraising.org.uk/causes/tinytickers/
2. If you shop on Amazon then did you know that you can use Amazon Smile – it’s exactly the same shopping experience, but you get cashback every time you shop.
On your desktop/browser: Simply visit Amazon Smile and select Tiny Tickers as your charity. Amazon will then make a donation of 0.5% of the value of your goods, at no cost to you. Please note, to qualify for the donation you must checkout at www.smile.amazon.co.uk every time you shop. On the Amazon app: Tap on ‘settings’ then ‘Amazon Smile’ and choose Tiny Tickers as your charity. You will then raise a donation for us every time you shop! And remember to use this unique link – https://smile.amazon.co.uk/ch/1078114-0
3. Recycle your unwanted stuff for tiny hearts with the help of Ziffit. I’ve done this and it was ridiculously easy AND helped me clear my endless clutter. Virgin Money Giving have partnered with Ziffit to help you sell your unwanted books, games, DVDs and CDs quickly and easily whilst raising money for Tiny Tickers. It’s never been easier to declutter and donate! Set up your own virginmoney page and then get clearing out that clutter or link to our page here.
4. Everyone is familiar with Ebay but did you know that you can sell your stuff for tiny hearts? Just list your items as normal and tick the ‘donate to charity’ button on your listing. Visit our Ebay homepage here.
5. #Donateyourbirthday on Facebook! Birthday parties might be postponed but you can still ask your friends to celebrate so why not ask them to donate the cost of a drink? Or ask your Facebook friends to donate to Tiny Tickers instead of buying you gifts. Just follow this link and you can #donateyourbirthday – https://www.facebook.com/fund/tinytickers/. And if Great Auntie Maud doesn’t use Facebook, don’t worry, she can send you a cheque in the post and you can add the donation yourself! Easy!
So there we go. These are some ideas for you. And please do tag us in any activity you choose to do – we’re on all social channels @tinytickers on Instagram, Twitter, Linkedin, Facebook and we even have a YouTube channel. Also remember that liking, following and sharing our posts are a huge help to our tiny charity.
Tiny Tickers is concerned by the findings of the BBC News investigation into private baby scans. We have long backed calls for sonography to be a regulated profession – something we believe is important for the protection of the public and to help the dedicated NHS sonographers who look after them. We fully support medical professionals and groups who are calling for this to happen. It is wrong that anyone can set up a private scanning business and call themselves a sonographer.
The two NHS scans offered to pregnant women at around 12 and 20-weeks are vitally important appointments, and the best opportunity to assess the development of your baby. Our research shows many people do not fully understand the crucial role of these NHS scans. Our Think 20 awareness campaign empowers pregnant women to better understand the 20-week screening and its role in checking the development of their baby’s heart.
Companies offering private scans have a responsibility to the women they screen and their babies – and that responsibility must come ahead of profits. We recommend women who choose to have additional private scans empower themselves by making sure they understand the scan’s purpose and limitations, and the qualifications of the person carrying out the appointment.
Seeing your baby on screen can be a wonderful experience, but there are times when private screening will lead to potential health issues being detected. Providers of private scans must take responsibility for ensuring any suspected findings are communicated and followed-up in the appropriate way – ensuring pregnant women and their babies receive the highest standards of care and support.
Pregnancy scans should be about babies, not profits.
We’ve been providing expert training to healthcare professionals since 2002, with our trainers visiting more than two thirds of maternity hospitals in the UK. Read more about the training we provide to NHS sonographers.
One group of health professionals that are quietly, and constantly on the frontline of CHD treatment, care and support are the Cardiac Nurse Specialists (CNS).
CNS’s are teams of experienced paediatric cardiac nurses who can support families with an antenatal diagnosis. They often work in very difficult and upsetting circumstances. These nurses are based at cardiac centres which are not always in the same place as the Fetal Medicine Unit where the family may have received an antenatal diagnosis.
Different centres have different services available and the specialist nurse may not always be able to attend the Fetal Medicine Unit at the point of diagnosis. These specialist nurses provide information, support and signposting. They are able to organise visits to the cardiac centres during pregnancy to reassure and familiarise patient families with their future surroundings.
The physical challenges that Cardiac Nurse Specialists face in their work environment are the same as countless frontline NHS staff – masks, physical distancing, reduced staffing levels due to self isolation or illness. On top of this, cardiac nurses face very emotive and challenging patient care. They often deliver distressing and difficult news to families, made more difficult by the current global pandemic. The human face is extremely expressive and is able to convey countless emotions but the wearing of face masks takes away the invaluable aspect of this non-verbal communication. Offering reassurance and comfort whilst considering social/physical distancing makes this situation so much harder.
Advice for Cardiac Nurse Specialists
Caring for babies, children and families affected by CHD can be challenging. Nurses, don’t forget to reach out to your colleagues for support when needed.
Use your line managers as much as you require. They can signpost you to local support services and organise clinical supervision if needed.
Try not to take your work/cases home with you – learn to compartmentalise
We know that you work in an emotionally demanding environment, self-care is a priority, not a luxury
Access any courses you can in communicating unexpected news and bereavement counselling
We’re delighted that we have been able to start placing pulse oximetry machines in maternity wards across the UK once again. These monitors, which can help detect serious heart conditions soon after birth, are used to help improve early detection rates of congenital heart disease.
Unfortunately, earlier this year we had to pause three of our key projects due to Government guidelines and to enable NHS hospitals to focus on their critical role responding to the pandemic. Our face-to-face sonographer training is still suspended for the foreseeable future, as is our project placing situs dolls in NHS Trusts. However we are delighted to announce that we are now pressing GO on placing more pulse oximetry machines in maternity units across the UK.
Before lockdown, with the support of Simon & Hayley Hills, we placed pulse oximetry machines at Broomfield Hospital in memory of their son Marshall. Marshall was born with a CHD which went undetected during Hayley’s pregnancy, and tragically their son passed away soon after birth.
Thanks to Simon & Hayley’s donation we placed six handheld machines on the Broomfield Maternity Unit. This will help ensure that all newborns born in Broomfield Hospital get the test that could save their life.
A baby is born with a serious heart condition every two hours in the UK. However, not all congenital heart defects can be detected during routine prenatal scanning and some babies are at risk of falling into the early stage of heart failure if their condition is not diagnosed in time. As the only national charity dedicated to improving the early detection, diagnosis and care of babies with heart conditions, we want to change this. We are delighted that with the generosity of supporters and funders, like Edith Florence Spencer Memorial Trust, Next PLC, Children’s Heart Surgery Fund, DM Thomas Foundation for Young People, Spifox Too and the GC Gibson Charitable Trust, that we can continue to ensure these vital machines benefit the babies & families that need them most.
We launched our Pulse Oximetry project in 2017, and in 2018 we launched our national appeal, Test for Tommy, as part of our mission to ensure that no baby will die from an undiagnosed congenital heart defect.
Natasha Pye’s son, Tommy, was one of the 1000 newborn babies who leaves hospital every year with their heart defects undetected. Tommy tragically passed away at 11 days old and we have dedicated this campaign to his memory.
“We now know that Tommy had a congenital heart defect that could be corrected with surgery. If only his condition had been detected, he could be alive today.”
Natasha, Tommy’s Mum
Our Test for Tommy campaign is dedicated to the memory of baby Tommy and aims to ensure that every baby is given the test that could help save their life. A pulse oximetry test measures the oxygen saturation levels in a baby’s blood. It is quick, painless and a low reading could indicate a heart defect.
At present, pulse oximetry testing is not a mandatory newborn test within NHS hospitals, and many maternity units perceive cost as a barrier to introducing the test. This is why we are determined to place pulse oximetry testing kits in maternity units across the UK. Our ambition is that we will have offered machines to every NHS Trust in the UK by April 2022.
Thank you to each and everyone of our supporters who have helped us with this project. We’re excited to get started again…
Tiny Tickers is delighted to have played a part in creating new guidelines for sonographers that will help thousands of expectant parents affected by pregnancy complications each year.
Research led by the University of Leeds will for the first time provide sonographers with specific words and phrases to be used consistently when explaining miscarriages, foetal deaths and anomalies during scans, including instances where congenital heart disease is suspected.
At present, there is no standardised way of communicating scan findings, which can lead to increased distress for the expectant parents.
Each year about 150,000 families in England and Wales are affected by pregnancy complications: 20% of pregnancies end in miscarriage or stillbirth, while one in 20 scans reveal an anomaly which could indicate the presence of a foetal health condition.
Parents often recall the exact words and behaviours that the sonographer used when conveying unexpected news.
The new training framework, published today (Weds, 5 Aug) in Ultrasound, will help sonographers provide clear information for expectant parents in stressful situations.
Tiny Tickers’ Chief Executive, Jon Arnold, said: “I have personal experience of being a parent being on the receiving end of unexpected news – my daughter’s heart defect was first spotted at my wife’s 20 week pregnancy scan.
“The way you are told about your baby’s potential condition can have a profound impact on what follows and how you as expectant parents cope with it. Our sonographer did a good job – she was honest, clear and compassionate in the way she told us about our unborn baby’s heart.
“At Tiny Tickers, we hear the full range of experiences from the families we support, and also hear from sonographers about how tough it is to suddenly come across a possible problem and have to let expectant parents know without any time to prepare.
“This research project has seen sonographers, psychologists, charities and parents with lived experience combine to create the world’s first set of guidelines to help sonographers with the really, really challenging task of communicating unexpected news. It’s really important work and we’ve been delighted to have been involved.”
Dr Judith Johnson, a Clinical Psychologist at Leeds’ School of Psychology, led the research.
She said: “The language used during scans can have a powerful emotional impact on the parents.
“It can influence how they respond to the news, and any decisions they then make regarding how to move forward.
“Addressing this issue has been particularly challenging because sonographers may have to communicate a wide variety of findings to parents, from miscarriages to a specific type of foetal anomaly.
“However, sonographers receive no mandatory training in news delivery and up until now, there was no agreed guidance for how to communicate these findings to expectant parents.”
A wide range of charities, international academics, healthcare professionals and policy experts worked together on the new, comprehensive set of guidelines.
The recommendations include:
prioritising the use of honest and clear communication, even with uncertain findings
using technical terms, but these should be written down for parents, together with non-technical interpretations
the term ‘baby’ should be used as a default, even in early pregnancy, unless expectant parents use other terminology such as ‘foetus’
at the initial news disclosure, communication should focus on providing information
expectant parents should not be asked to make decisions during the scan
Dr Johnson said: “These are the first consensus guidelines for news delivery in ultrasound which have been published anywhere in the world
“We hope that these guidelines can both improve the experiences of expectant parents in the UK and help to shape news delivery policy in other countries.
“We also anticipate that these guidelines will help to reduce sonographer anxiety around news delivery.”
Ruth Bender Atik, National Director of The Miscarriage Association, said the guidelines could make a major contribution to patient care.
“The guidance focuses on key aspects of the ultrasound experience in pregnancy, from the first hello through to discussing next steps.
“They suggest specific words, phrases and behaviours that can best serve their patients and they remind practitioners not to make assumptions about how news may be received.
“We are delighted to have been involved in their development and will share them widely.”
A spokesperson from the Down’s Syndrome Association said: “We were very pleased to be involved in the important project.
“Sonographers have a crucial role to play in pregnant women’s antenatal care. It is vital that sharing news of an ‘unexpected’ finding in a scan is done with sensitivity and compassion.
“This resource gives guidance on how best to approach this, developed by a range of professionals who have thought this through carefully.
“Sonographers also need to know they can refer women for additional information and support from a range of relevant organisations, including support available from the Down’s Syndrome Association.”
Jane Fisher, Director of Antenatal Results and Choices (ARC) said: “We hear regularly from parents who have had unexpected news from scans and know how sensitive they can be to how the information is conveyed.
“We also run training for sonographers and know how keen they are to ‘get it right’. We welcome these resources as they will help equip sonographers to provide high quality care to parents and avoid causing extra distress in these challenging circumstances.”
Gill Harrison a sonographer at The Society and College of Radiographers, was also involved in drawing up the guidelines.
She said: “Sonographers have for many years been taught to deliver unexpected findings detected during an ultrasound scan using methods originally designed for oncologists.
“Unfortunately the setting is completely different in ultrasound. Sonographers are not always expecting to find an abnormality or miscarriage.
“It is often not until they start scanning that they realise things are not as they should be, leaving little time for preparation.
“To have a framework specifically designed for obstetric ultrasound practice, with clear examples from experts within the field will help in the education of student sonographers and assist experienced practitioners to develop their skills.
“This should not only help build confidence and skills in the ultrasound community, but also lead to better patient care and satisfaction in what can be extremely challenging circumstances for all involved.
The ASCKS framework research was funded by the Society and College of Radiographers, and the University of Leeds. Framework contributors include: Tiny Tickers, The Miscarriage Association; SANDS (Stillbirth and Neonatal Death Society); ARC (Antenatal Results and Choices); The Downs Syndrome Association; The Society and College of Radiographers; SHINE (the organisation for Spina Bifida and Hydrocephalus); Public Health England; Department of Health and Social Care.
I cannot believe it is just over a year since I decided to write a children’s picture book. I remember it distinctly as I had started penning little lines here and there at the top of 2020 and had pretty much finished the first draft just before the first lockdown hit in March.
I’m not entirely sure what prompted me to write it either. I’ve always had ‘write children’s book’ on a to-do list somewhere and following my daughter’s unexpected heart surgery, I think I was experiencing a deeper inspiration to get going, driven by her.
Elodie, now 2.5, had her open heart surgery in July 2019, at 14 months old (read her story here). A rather sizeable hole in her heart had been discovered at 13 months. My husband and I were utterly shocked at this news.
When we were told about the surgery she needed and once the risks and info on the procedure had sunk in, the reality that she would be left with a scar down her chest made me both sad and also grateful. A strange concoction. As a parent you never want any harm to come to your children and a scar will more than often be an indication that somewhere down the line there was harm, pain. A lasting print of a traumatic time. I felt angry that her little body was going to be put under such a mammoth event when she really should’ve only been concerned about where her next snack was coming from. Gratitude for the upcoming scar was also there too though, because that scar would ultimately signify that something had been fixed. That something truly miraculous had happened just underneath it to give our girl a life of running around and causing havoc as only a little one should.
When ever anyone asked about what kind of scar she’d be left with (as it seemed that was a real point of interest for people) I would turn in to a defiant champion of my little girl. Seemingly already preparing myself to do nothing but fill her with confidence as she grows. As best I can.
As the surgery came and went, really successfully, and Elodie went from strength to strength, I would ask friends and family to never show any kind of upset or shock if and when they saw her new mark. I never wanted Elodie to see that it caused those kind of reactions. Because that mark was proof of her strength. It was something to be in awe of. I have always chosen to show wonder at her scar, whenever she would acknowledge it herself especially in those early days post surgery. Kids are so perceptive and really look to you for a steer on things. Is this good or bad? Is this safe or unsafe?
So seeing our healing little girl, stronger than any other person I know, I felt compelled to write my first children’s book as a sort of love letter to her. A story of a little girl, not unlike lots of other little ones, who had to have an operation that left her with a ‘wonder line’.
My Wonder Line is a representation of little ones who have been left with scars from surgery. It’s so beautifully and tactfully illustrated by the extremely talented Angela Mayers and is aimed at making any child with a scar to feel represented on bookshop shelves.
I have released My Wonder Line to be there as and when needed. Perhaps when a child first starts to enquire about their own scar, or when they start to compare themselves to others. Or perhaps as a companion to a child about to go in for surgery. Some adults have also shown an interest in it as a way to open up conversations with their little ones about their own scars.
Another aim of the book is to open up conversations within the home about the journey of our own bodies. I am 40 this year and in rather recent years I have learnt that as an infant I was operated on for a herniated belly button. I’d had no idea about that growing up but think it is so important for us to know our own bodies better than anyone else.
My hope is that the book is comforting and celebratory. One where a child can point and say, “Hey that’s like me!” but also a guide of sorts for any little ones who have a friend with a scar too. We can all feel different in many ways and at different stages of our lives. I hope that in spotting some ‘differences’ and making them normal, the difference isn’t really that different at all. As one line in the book reads:
‘We can all find something, a part not quite the same
But imagine a life if we all had the same name!
We’d be topsy and turvy, we’d feel rather upside down.
It’s in our different bits where our real stories are found.’
My Wonder Line is available for advance pre-order now at www.mywonderline.com and will be ready to ship from March 2021. 10% of profits from book sales will be going to support Tiny Tickers.