We were delighted to have been involved in this important research project, led by Dr Judith Johnson & the University of Leeds, to create the first ever world guidelines for sonographers communicating unexpected news during pregancy scans. I shared my own experiences on BBC Breakfast last month. You can catch up here.
This project has meant a lot to me as 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’re delighted to have been involved.
We are so grateful to all of you who support us week in, week out, month after month. Your support means we are able to do so much more to help babies with serious heart conditions, their families, and the NHS heroes who look after them.
Thank you for reading,
Jon
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We wanted to drop all of our supporters a note to say a big thank you for your continued support during these difficult days. And I do hope you are staying safe and well.
We are trying our very best to keep going - however we're a tiny charity and as a health specific organisation, we are not entitled to any of the UK Government funding packages. We continue to provide existing services where possible. We continue to offer training materials and resources to health professionals. We continue to be a voice for patients and parents, and to work with the NHS and service providers. We continue to offer information, advice and support to families.
The Coronavirus pandemic has forced us to change the way we help our beneficiaries. Unfortunately, we've 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. For the time being, we have suspended face-to-face sonographer training, and have paused our projects placing pulse oximetry testing machines and situs dolls in NHS Trusts. We remain fully committed to these key projects and will resume them as soon as it is right to do so.
All our other work continues, and we are also working on new ways to help health professionals and patient families at this most difficult time. This includes developing new digital resources for sonographers and support services for families.
A baby is born with a congenital heart defect every two hours in the UK - Coronavirus doesn't change that fact. Much of what is normal in our lives may have shut down, but our cause has not closed. Therefore, Tiny Tickers remains focused on doing what we can to help babies with CHD, their families, and the health professionals who look after them.
Once again a huge thank you for helping us to keep supporting those facing the challenges of congenital heart defects at the worst possible time.
I hope you are well,
Kind Regards
Jon, Tiny Tickers CEO
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As you have very generously supported us in the past, we wanted to get in touch to let you know how we are approaching the coronavirus pandemic - the steps we are taking to help families; keep our services running; and to look after our staff.
Firstly these are very uncertain times for everyone. We are bracing ourselves for a big impact in the coming weeks but our priorities are to keep supporting patient families; to continue our services for health professionals; and to look after our colleagues. It will only be through the generosity of our supporters and donors, like you, that our services will keep running.
Even though we are facing a huge public health emergency, a baby will still be born with a serious heart condition every 2 hours. That fact remains. As does the fact that we will now need to do even more to protect them, their families, and the health professionals that look after them, over the coming weeks and months.
Here are some of the things we’re doing:
Following the latest Government advice, we have decided to suspend all face-to-face sonographer training for the foreseeable future. Our online training resources remain available and we will add to these in the coming weeks. Our medical staff may also be deployed into the NHS during the next few weeks - and we support this completely. We stand by all NHS staff at this difficult time and send them our very best wishes as they work selflessly and tirelessly on behalf of the public.
We’ve cancelled or postponed all other non-urgent external meetings and visits for the time being. Unfortunately, this means we will not be facilitating staff and supporter trips to hospitals or schools during this period;
Our small team of six staff all work from home, so we are well-placed to continue most of our operations as normal. Our staff are all up to date with the latest advice and we have stopped ourselves from meeting in person for the foreseeable future. Flexible working plans have been put in place in the event of school closures and/or illness among the team. We’ll do the best that we can to look after each other, and to keep things running smoothly, basically.
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Okay, confession time. Some charities’ annual reports are dull. They don’t exactly entice you to curl up on the sofa with a cuppa and a few biscuits in eager anticipation of flicking through them. But ours isn’t like that. It really isn’t.
As well as going through our accounts, it also talks about our main activities and the impact we’ve had. We tell patients’ stories, and take the opportunity to say a great big thank you to all our supporters and funders. We’ve tried hard to make it a good read so, if you can spare half an hour to look through it, I guarantee you will learn more about us and consider it time well spent.
Our future will see us doing more of the same great work we are already doing – work that has helped increase average antenatal detection rates of CHD from 23% to 50% in the 20 years we’ve been around. Plus a whole raft of new work that we’re eager to get stuck into as soon as funding and resources allow.
And that’s where we rely on you, our incredible supporters – put very simply, without your support we can’t achieve any of that. So we remain incredibly grateful to every single person, company or grant-maker who donates, fundraises and supports us in any way.
However small you think your contribution to Tiny Tickers is, I can assure you, it’s absolutely vital. A sincere and very large thank you from all of us.
Warmest Wishes,
Jon Arnold,
CEO, Tiny Tickers
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At Tiny Tickers, we want to increase early detection rates of cardiac conditions because we know that spotting a defect early can improve a baby’s chances of survival and long-term quality of life. One of the main ways we do this is by training the sonographers who carry out pregnancy scans (20 week scans) to have the skills and confidence to detect heart defects in unborn babies.
To further assist the sonographers who scan babies at pregnancy scans, we created the situs doll. Each doll will help sonographers assess the tiny hearts of the babies they scan at 20 weeks gestation. This Giving Tuesday we have been asking for donations towards providing these dolls to hospitals around the UK. So far we have managed to raise nearly £800, with 66 dolls named and ready to be sent to hospitals in the UK.
Our Head of Training, Anne Rhodes, explains why she created situs dolls and how they help save lives:
‘One of the first things a sonographer does when starting a 20 week anatomy scan is to find out which way round the baby is lying.
Babies can lie in any position in the womb and this changes all the time as the baby moves around. They can be lying with their head up towards mum’s head, they can be upside down or on their side, curled up or stretched out.
It is important to work out which is the left and right side of the baby because the sonographer needs to check that the baby’s internal organs are in the right place.
Understanding which way round the baby is lying inside the mother is one aspect of the scan that can be very challenging. Working out where the baby’s head and spine are and then imagining the position of the baby can be difficult.
To help with this, while out delivering training to sonographers, I came to realise that by physically placing a baby doll (the same size as a 20 weeks fetus) over the mothers abdomen in the same position as the baby is lying, it helped the sonographer to work out the baby’s right and left side.
Then, I dressed the doll in a t-shirt which has an anatomical diagram of the heart on.
This helps the sonographer see which way the heart should be pointing. The heart diagram also has lines through it and these demonstrate where the scan probe should be over the heart to obtain all the views required by the sonographer in accordance with the fetal anomaly screening programme.
This is a simple, effective and practical way of confirming orientation and helps the sonographer to obtain the views they need when the baby is in different positions.’
Our mission is to ensure that every sonographer has access to a situs doll, to assist them with scanning unborn babies. Each doll costs just £10 and will help a whole sonography team in a hospital as they scan thousands of pregnant women every year.
You can read more about this exciting update on our website www.tinytickers.org
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