Help babies with serious heart conditions

Tiny Tickers works to improve the early detection, diagnosis and care of babies with heart problems in the UK.

Thanks to everyone who has recently donated - it really makes a difference in helping more heart babies to have a better start in life.

New film

We have finished a new film thanks to the generous support of William Johns and his film company.
You can see this on our YouTube page:  www.youtube.com/tinytickers

This is a very moving film about a family’s experience of having a baby with a congenital heart defect, where a young life can be in the balance, and how prenatal detection can make a crucial difference. 

If you would like to read more about other families’ experiences of heart problems, their stories they can be found at:  www.tinytickers.org/content/experiences

There is also a video for corporate support and anyone whose company wants to support Tiny Tickers, can find more information, here:  www.tinytickers.org/content/get-your-company-involved

Other news

We had a lot of great events up and down the UK in support of heart week, around Valentine's Day.  You can read more on our website:  www.tinytickers.org/TTW

Also, Team Bella have once again raised the bar in terms of fundraising by taking part in the Tough Mudder in memory of baby Bella:  www.tinytickers.org/content/team-bella-face-tough-mudder-memory-bella

Thanks again for your continued support.

Tiny Tickers works to improve the early detection, diagnosis and care of babies with heart problems in the UK, and thanks to your support, we have made good progress since our last report in September.

Training results

Since the last report, important results have been published, showing the impact of training on improving the detection of heart disease in babies, particularly in Wales where national training started in 2008.  In England, national training started in 2010 and ran for 2 years, so it is too soon to see results, but there has been steady improvement nevertheless.  

For more information, visit our facebook pages (there is a link at the bottom of our web pages).

Heart Champions in Government

We recently provided information to the All-Party Parliamentary Group on Heart Disease and recommended that there should be a Heart Champion in every screening department.  Having sonographers, in local maternity hospitals, with a special interest in improving heart screening would be an important step in increasing detection of heart babies.

For more information, visit our news page on our website:  www.tinytickers.org/news

Pulse Oximetry ...

Dr Andy Ewer who is one of our expert medical advisers has been meeting the Newborn and Infant Physical Examination Programme group (NIPE) to make the case for Pulse Oximetry just after birth to detect heart problems.

The good news is that Pulse Oximetry is still on the table and we will probably know more next year when NIPE make an announcement. The introduction of Pulse Oximetry for all newborns would help to detect low oxygen saturation which is linked to certain congenital heart defects.

New film

We are hoping to produce a new film in the new year, thanks to the support of a film company.

Check out our video on YouTube that shares a family’s experience of having a baby with a congenital heart defect:  www.youtube.com/tinytickers

If you would like to read more about other families’ experiences of heart problems, their stories they can be found at:  www.tinytickers.org/content/experiences

There is also a video for corporate support.  Anyone whose company wants to support Tiny Tickers, can find more information, here:  www.tinytickers.org/content/get-your-company-involved

Thanks again for your continued support.

Tiny Tickers continues to work to improve the early detection, diagnosis and care of heart babies in the UK, thanks to your generous donations.  

Here is an update on areas where we've made important progress, since our last report in June ...

Progress on posters

We are developing new posters that can be put in every maternity hospital.  These posters feature 5 important views of the heart that can identify structural heart defects using medical ultrasound with the addition of Colour Doppler.

Colour Doppler shows blood flow and can demonstrate if blood flow is reversed due to a heart defect that may not be obvious using ultrasound alone.

This new poster will help to improve sonographers' knowledge of how the heart looks and help them identify heart defects and will raise awareness of the need to look in detail at the heart.

What is a Heart Champion?

In June we reported on Heart Champions, but what is one?  These are sonographers, based in local maternity hospitals with a special interest in improving heart screening.  Local experts are an important step in increasing detection of heart babies.

Important news on Pulse Oximetry

Dr Andy Ewer who has joined our panel of expert medical advisers is meeting the Newborn and Infant Physical Examination Programme (NIPE) to discuss the way forward with Pulse Oximetry later this month.  If NIPE say yes to Pulse Oximetry - then it will be a matter of how and when, but if NIPE say no, we will need to campaign again.

Dr Ewer is Senior Lecturer and Honorary Consultant in Neonatal Pediatrics at the University of Birmingham and Scientific Member, National Medicines for Children Clinical Studies Group.  He has published studies and been a leading voice for the introduction of Pulse Oximetry for all newborns to detect low oxygen saturation which is linked to certain congenital heart defects.

New videos

We now have a new video on YouTube that shares a family’s experience of having a baby with a congenital heart defect:  www.youtube.com/tinytickers

If you would like to read more about other families’ experiences of heart problems, their stories they can be found at:  www.tinytickers.org/content/experiences

There is also a video for corporate support.  Anyone whose company wants to support Tiny Tickers, can find more information, here:  www.tinytickers.org/content/get-your-company-involved

Thank you very much for your continued support.

Links:

• Tiny Tickers videos

Tiny Tickers has been working hard to improve the detection, diagnosis and care of heart babies in the UK, and we're able to do that thanks to your generous donations.  Here are a few of the areas in which we've been making progress...

1. Think HEART - we collaborated with the Children's Heart Federation on Children's Heart Week in May 2012 which aimed to raise awareness of the symptoms of heart problems in newborn babies amongst health professionals and parents.  The events included an expert panel and a reception at the Houses of Parliament and we were represented on stage at both events, sharing our expertise and experience.

2. Heart Champions - we've been very busy planning this exciting 2 year pilot which will create local Heart Champions based in maternity hospitals and which we hope will launch later in 2012.  At the moment we are signing up London based hospitals to participate in the pilot and seeking funding.

3.We've been meeting with the Fetal Anomaly Screening Programme (FASP) and the Newborn and Infant Physical Examination Programme (NIPE) to advise them on the content of leaflets for parents on antenatal screening and tests which can help identify congenital heart disease in newborns.

4.  We are pleased to announce that Dr Andy Ewer, Senior Lecturer and Honorary Consultant in Neonatal Pediatrics at the University of Birmingham and Scientific Member, National Medicines for Children Clinical Studies Group is joining our panel of expert medical advisers.  Andy has been a leading voice for the introduction of a simple test called Pulse Oximetry for newborns to detect problems with oxygen saturation which often indicates congenital heart defects.  Together we will be campaigning for all infants to have this test, which research shows could save hundreds of lives each year.

5. We're working with a company to put posters in every maternity hospital to refresh sonographers' knowledge of how heart defects look on the ultrasound and to raise awareness of the need to look in detail at the heart.

Families are kind enough to share with us their experiences of having a baby with a congenital heart defect.  If you would like to read their stories they can be found at http://www.tinytickers.org/content/experiences

Thank you very much for all your support.

Links:

• Family stories