Frequently asked questions
Here are some of the most common questions we get asked. If your query isn’t covered here, please get in touch via firstname.lastname@example.org and we’ll do our best to answer your question. If you require any clinical advice, please contact a relevant health professional.
Questions about congenital heart defects
How many babies are born with CHD? Studies vary. The NHS Choices website puts the figure at up to 9 per 1,000 live births – or 1 in 111. The most widely quoted figures are 1 in 100, 1 in 125 and 1 in 133.
Is a baby with CHD really born every two hours? According to EUROCAT (2014) there are approximately 4,000 CHD pregnancies each year which equates to 11 cases each day – meaning roughly 1 baby every 2 hours is born with congenital heart disease.
How serious can CHD be? Serious heart conditions are the most common and deadly congenital birth defect – responsible for 40% of all deaths from congenital anomalies and 1 in every 13 infant deaths in the UK. However, it is important to remember that surgical intervention is very successful in the UK – with survival rates among the highest in the world. It is also important to remember that there are many different types of CHD, with differing levels of seriousness, and each baby’s case is unique to them.
Is CHD hereditary? Should I get my other children checked? Approximately 10% of CHD’s can be passed on genetically so if you are worried about any other children, then please ask a relevant health professional.
Questions about my baby
Please always seek medical advice from relevant health professionals. Tiny Tickers is unable to offer medical advice.
My baby has just been diagnosed with…? Understanding the particular heart defect your baby has been diagnosed with is very important. You should have seen a specialist doctor when you were given the diagnosis, and they will have explained the condition your baby has. They may even have given you a diagram of your baby’s heart, and some resources. Take the time to read the information you have been given, and get back in touch with your specialist if you don’t understand any of it.
We have produced a new diagnosis booklet’ that gives you an overview of what to expect and the advice that parents, who have been through something similar, would like to give – order yours here.
Can I speak to someone about my baby’s condition? If you would like to hear from other parents who have been in similar positions then please join our Tiny Tickers Parent Group on Facebook and share your story. Or if you’d prefer not to share your story publicly, get in touch via email@example.com and we can put you in touch with other parents who have similar experiences.
I’m worried my baby has a heart problem but no one is listening – what should I do? The Think HEART campaign is a really easy way for parents and health professionals who aren’t cardiac specialists to know the key signs that a baby may have an undiagnosed heart condition. More info here.
My baby has CHD but is was not diagnosed during my pregnancy, should this have been picked up? It is not possible to detect every case of CHD during pregnancy – some conditions can’t be spotted and others can be incredibly hard to detect due to a number of factors, including the position of the baby during the scan. We want to increase early detection rates of cardiac defects – since we started our work in 1999 the national prenatal detection rates in the UK have doubled from 23% to 46%. That’s the national average – in some areas around the UK, detection rates are already well above 50%.
Questions about our sonographer training
How much does it cost to train a sonographer? £75 enables our experts to provide specialist on-site training for one sonographer, and our hospital visits usually see us train up to five or six sonographers per day.
Why does a charity have to provide this training? Sonographers are highly trained health professionals. Our training is specialist training that is designed to offer additional support and expertise to the training sonographers already receive. Research studies show training can help improve antenatal detection rates, and we exist to do everything we can to help sonographers.
Why doesn’t the NHS pay for this training? Some hospitals approach us to buy in our training for their unit. Where we provide large regional training programmes and conferences, or where we approach specific hospitals or areas, we use our charitable funds to enable us to train free of charge. The reason for this is simple – it means we are training a lot more sonographers and so more babies benefit.
In either case, we do not seek to profit from our training – we aim to cover our costs only – and work with hospitals to make our charitable services as accessible as possible.
How can I find out if my hospital / sonographer has been trained by Tiny Tickers? We can let you know areas where we have trained, but not which individual sonographers we have trained. Please remember that all sonographers are highly trained health professionals whether or not they have received Tiny Tickers’ specific training.
Questions about Tiny Tickers
Is there anything I can do to help? Can I volunteer? As a small charity we rely on volunteers to represent us in their local communities and to support the various activities and events we hold throughout the year. Whether you can spare a few days every month or an afternoon once a year, we have a volunteering role for you and we would love to have you on the Tiny Tickers team! There are lots of ways you can volunteer so please take a look at all the fantastic ways you can help here.
Are there any other charities doing this work? Tiny Tickers is the only UK charity dedicated to improving national detection rates for CHD. We receive no statutory funding and rely on the support of the public to fund our running costs and projects. We campaign and provide training so that more babies hearts are given a better start, and we concentrate on detection during pregnancy and in newborns as we know that the earlier a heart defect is identified, the greater the chance of survival.
What percentage of money raised goes on fundraising/admin and salaries? You can read our latest Annual Report here, which includes our accounts.
What does your CEO get paid? We are a small charity – currently we have five employees, four of whom are employed on a part-time basis. We do everything possible to keep our running costs as low as they can be. You can read our latest Annual Report here, which includes our accounts.
Do you work with other charities? Yes, we believe charities can have an even greater impact when they work together. We work collaboratively with other charities and organisations to help ensure families with a diagnosis of CHD get the support and information they need. And, while we don’t run formal support services ourselves, we work closely with charities that do and help our families access the right support for them.
We’re an active member of a coalition of national congenital cardiac charities, working in partnership with other charities who help families affected by CHD in the UK.
We actively support the More Than A Cold campaign to raise awareness of bronchiolitis and, in 2015-16, became one of the founding members of a national coalition of charities working to improve bronchiolitis awareness and services.