Tiny Tickers is working hard to help give babies with serious heart conditions a better start. We want these babies to get the treatment they need as early as possible. We want them to get the right care at the right time to give them the best chance of survival and a good quality of life.
National prenatal detection rates have doubled since Tiny Tickers was launched – and we’re proud of the impact we’ve had. But although great strides have been made in detecting heart problems, there is still far more that needs to be done. Sadly, heart defects are still one of the biggest killers in babies under 1, being responsible for 1 in 13 infant deaths. We are determined to improve this statistic. We want every baby to be detected as soon as medically possible.
“For a small charity we’ve already achieved so much, and we have big ambitions to do even more. Thanks to our wonderful supporters, we’re growing – which means more training, more support for families and generally having an even bigger impact for babies with serious heart conditions.” Jon, Chief Executive
What we do: Tiny Tickers provide specialist training to sonographers doing 20 week pregnancy scans – the best chance to spot most heart problems before birth
From Telford to Torbay and Grimsby to Guernsey, we have trained sonographers at hospitals all over the UK. One third of serious heart defects go undetected before birth and it’s vital that we train and educate as many sonographers as possible. This year, we’re running projects throughout the North West, Yorkshire, Scotland and the North East regions. This means hundreds of sonographers will have the chance to benefit from our expert trainers, through a combination of theory lecture days and hands-on practical training in sonographers’ local units.
The impact we’ve had: we estimate Tiny Tickers have trained in 75% of sonography units in the UK – meaning thousands of mums-to-be each year are having 20 week scan performed by sonographers who’ve had our specialist cardiac training. Since 2016 we’ve trained 1,571 sonographers in over 120 hospitals.
Fund Life-Saving EquipmentWhat we do: We fund pulse oximetry machines in maternity units across the UK. Pulse Oximetry machines can indicate possible heart or respiratory issues quickly and effectively by measuring the amount of oxygen in the blood. Low oxygen levels can be a key sign that a baby could have a critical heart defect. This is a very simple test that can help identify cases quickly and effectively, leading to immediate referral if required. Not every baby will be born visibly displaying signs and symptoms and without this machine serious defects could go undetected.
The impact we’ve had: To date we have funded over 200 machines and 2019 saw us placing our first 3 machines in Wales, and our first 5 in Scotland.
What we do: Tiny Tickers campaign to improve the early detection and care of heart babies
For example: We’re the patient and public representative on the committee overseeing a national piece of work to improve early detection rates; plus we’re on the NHS England clinical reference group for congenital heart disease; the steering group for the ongoing national pilot for pulse oximetry testing; and a range of other committees and boards – all making sure the patient voice is heard in decisions about how services are run.
The impact we’ve had: We have collaborated with the NHS Fetal Anomaly Screening Programme on an information leaflet given to pregnant women whose baby is suspected to have a cardiac anomaly at their 20-week scan.
The standards put in place by the NHS England board also include specific improvements we have lobbied for – as a result pregnant women whose baby is suspected of having a heart defect will be seen quicker by a specialist, and will have a specially trained nurse to support when they do. Tiny Tickers are proud to have achieved real, practical improvements for families at an extremely difficult time.
What we do: We spread awareness among parents-to-be, new parents, health professionals and the general public.
For example: Tiny Tickers’ Think Heart campaign highlights the signs that newborn babies may have a serious heart condition that hasn’t been spotted. It gives parents and health professionals easy-to-remember information about what to look for, and our awareness materials have reached thousands of people this year alone. This is a really easy way for those who aren’t cardiac specialists to know the key signs that a baby may have an undiagnosed CHD. The concept was developed by Dr Joan LaRovere at the Royal Brompton Hospital and it’s our mission to get the message to as many new parents and health professionals as possible.
The impact we’ve had: Our awareness work reaches tens of thousands of people through printed materials, social media campaigns, newspaper and radio coverage and directly at events like baby shows. As a result, mums-to-be are more informed about their pregnancy scans; health professionals and new parents know the signs of undetected heart conditions; and the general public is more aware of just how common and serious heart defects can be.
We support families who have a diagnosis of serious heart problems, and work with other charities and professionals to make a difference to families affected by CHD.
For example: We have developed a range of materials that gives them more information about the journey ahead. Our Family Experience films are a support tool for those struggling to come to terms with a diagnosis. These are a series of 10 short films that provide information & guidance for families dealing with a CHD diagnosis. And we have a wonderfully supportive Parents Group on Facebook with over 900 members – a supportive community for parents and carers of babies and children with heart conditions to find support and encouragement from one another, as well as share their experiences.
We have also developed resource booklets for families dealing with a diagnosis of congenital heart defects (CHD) including a New Diagnosis booklet for families and a Going into Hospital booklet helping families to understand what may happen when facing a hospital stay with their baby. You can order these here.
These resources inform families and include information about the journey ahead such as; what it means for their baby and immediate family, what to expect, questions to ask their care team, stories from other families, support available (including benefits), and advice on other important issues e.g. dental care and treatment. These booklets, and our films, offer advice, reassurance, and support, as well as allowing us to raise awareness of the support we can give, and the work we do.
Where parents-to-be need specialist support following a difficult diagnosis during pregnancy, we work with ARC (the Antenatal Results and Choices charity) to make sure they get the support they need.
The impact we’ve had: Our work in partnership with other charities includes being part of a national coalition of heart charities that has helped drive improvements to children’s heart services nationally through working with NHS leaders and government. Also, we’re founding members of a bronchiolitis coalition alongside the British Lung Foundation and TAMBA, and support the annual More Than A Cold campaign into bronchiolitis awareness.