We need your thoughts & ideas – help us plan for the future!

February 21st, 2014

We are currently working with PricewaterhouseCoopers (PWC) on a long term strategy and direction for the charity.

We are ambitious and keen to ensure that we provide relevant and strong support to our heart families and represent their needs appropriately.

We need you to help us by taking part in this short survey –www.pwcresearch.com/uc/childrensheartbeat/

Please take a few minutes to fill it in and help us plan for a bright future.

We would like to thank PWC for their time and support in this project, which they are undertaking pro bono, and look forward to sharing the results with you all over the next few months.

Pulse Oximetry Screening – Info Doc

February 10th, 2014

Pulse Oximetry Screening

What is Pulse Oximetry Screening?

Pulse Oximetry screening is a safe, simple and reasonably accurate test that measures oxygen saturations in blood using a non-invasive device.

How can pulse oximetry improve detection rates of Congenital Heart Defects?

Congenital heart defects (CHD) are the most common birth defect in Northern Ireland and studies indicate that critical congenital heart defects are the leading cause of infant death in developed countries.

Although antenatal screening of congenital heart disease is improving, it is estimated that up to 50% of babies with CHD may be missed by fetal ultrasound.  Each year up to 33% of babies with critical CHD are sent home undiagnosed.

By measuring oxygen saturation levels, pulse oximetry on newborns can be an early indicator of a heart defect, detecting cases of critical congenital heart disease that would otherwise go undetected.  Research shows comprehensively that pulse oximetry testing can greatly increase detection rates to around three-quarters.  Early detection means that the baby’s outcome is much more likely to be positive, as early treatment leads to better results.

Practically, how will this impact on babies with CHD?

The introduction of pulse oximetry will help to diagnose critical CHD in babies that might otherwise be discharged and sent home undiagnosed.

In these instances the baby with critical CHD goes home and is rushed into hospital a few days or weeks later with shock and heart failure.  At which point the baby requires urgent treatment.

It is evident that the consequences of delaying treatment until the infant becomes critically ill are higher risks of mortality, much longer stays in ICU and a higher incidence of serious complications.

Introducing pulse oximetry would improve detection rates, reducing emergency incidents in babies in ICU, preventing longer stays in ICU and reducing risk.

This early treatment of infants before they become critically ill will have a positive impact, both for the family involved and also financially for the Health Service.

 Financial Costs

The benefits of introducing pulse oximetry screening for newborns far outweigh the costs.

Most neonatal units have pulse oximeters that are used for other purposes, and most nurses and technicians are well trained in the use of oximeters.  It is estimated that each test would cost from £4.68 – £6.24, with reusable probes costing in the region of £150.

This is in comparison to the very high costs associated with delayed diagnosis resulting in long stays and care in ICU, and the potential for serious complications incurring further costs.

 Pulse Oximetry screening across the world

In Switzerland over 85% of new borns are screened and in the United States of America over 50% of states have or are in the process of introducing pulse oximetry screening.

In the Republic of Ireland the Royal College of Physicians Ireland have recommended screening be introduced since 2012.

Pulse oximetry screening is currently offered successfully as part of newborn checks in one in five hospitals in the UK and a consultation has recently been carried out to consider implementing it throughout all hospitals.

 Pulse Oximetry and Northern Ireland

Children’s Heartbeat Trust want Northern Ireland to lead the way in offering pulse oximetry screening for every new born baby in our hospitals.

The early treatment of infants with critical congenital heart disease before they become acutely ill will allow the most appropriate intervention and reduce emergency incidents.

This will then have a huge impact on babies, parents and families that currently face the risks of leaving hospital with a critically ill baby due to congenital heart disease.


Research Papers consulted

Hoffman., It is Time for Routine Neonatal Screening by Pulse Oximetry

Thangaratinam, S. et. al., Pulse oximetry screening for critical congenital heart defects in asymptomatic newborn babies: a systematic review and meta-analysis

Rasiah & Ewer., A business case to establish a neonatal pulse oximetry programme for screening of congenital heart defects


Children’s ArtBeat Competition

February 7th, 2014

Harley and Zoe launch Children’s Artbeat Competition 2014 in the Ulster Museum.

Let’s make Art for Hearts Sake

Art Competition launch kicks off Congenital Heart Disease Awareness Week

Five year old Harley, from Portavogie, donned his white coat and stethoscope to highlight the beginning of Congenital Heart Disease Awareness Week, as he launched the ‘Children’s ArtBeat competition with Zoe, 11, from Ballyclare at the Ulster Museum in Belfast.  Both Harley and Zoe have complex heart defects.

The Children’s ArtBeat competition is for 4 – 11 year olds and Children’s Heartbeat Trust is asking each child to design or imagine their own heart, using whatever materials or colours their imagination desires! The competition closes on Friday 25th April with three top prizes up for grabs for the lucky winners.

As well as the competition, the week will include an information event about Pulse Oximetry in partnership with the All Party Group on Congenital Heart Disease at the Northern Ireland Assembly. Pulse Oximetry is a simple, non-invasive technique which measures oxygen saturation levels at birth and can greatly increase early detection of a critical congenital heart defect to around three-quarters.  Early detection means that the baby’s outcome is much more likely to be positive, as early treatment leads to better results.

Speaking at the competition launch, Sarah Quinlan, Executive Officer of Children’s Heartbeat Trust said: “Congenital Heart Disease is the most common birth defect in Northern Ireland, with over 250 babies born each year with the disease. Treatment can include surgery, medical treatment and extended periods of hospitalisation. Supporting children with the defect and their families is critically important and this week, as well as highlighting the impact on children, will also show the great work by clinicians and support provided for families.”

You can email admin@childrensheartbeattrust.org to get the competition or the competition and rules can be downloaded  here


ArtBeat Comp Rules



Tattoo Event; 15th February; Studio 76, Derry

February 3rd, 2014

The Tattoos are good for the Heart event is in its second year and is expecting an even biggerturn out than last year!

Call down to Studio 76 to get your very own special heart tattoo – all in aid of Children’s Heartbeat Trust. Also available on the day will be the opportunity to have a 15-minute photoshoot by Kayleigh Clark.

Booking essential so please contact Hayley Moore Doherty via their Facebook event page

Italian Night; 15th February; Coleraine Yacht Club

February 3rd, 2014

Come and experience a taste of Italy at Coleraine Yacht Club on Saturday 15th February.

As well as an Italian Feast including delicious pesto and authentic ice-cream donated by local producers, also enjoy after dinner entertainment.

For tickets contact Rhonda Lynn on 07971826872

CHD Awareness Week 2014 7 – 14 February

January 31st, 2014


CHD Awareness Week is this 7 – 14 February. Throughout this week we have lots going on! We are holding an event about Pulse Oximetry in partnership with the All Party Group on Congenital Heart Disease in Stormont, we will be launching our 2014 Heart Art Competition and will be continuing to raise awareness of heart disease in children and young people through a variety of media. Should be a fun week!! : )

Caravans available for booking from 1 February 2014

January 31st, 2014

Newcastle & Ballycastle Caravans

Bookings will be open for 2014 from 1st February 2014.

**Please note that if you and your family enjoyed a stay in our caravans in the last year then you can only provisionally book in Feb 2014, but we will be unable to confirm the date until the middle of March.  This is to ensure that families who have not yet had an opportunity to have a holiday in the caravans are given priority**

We can only accept bookings for the caravan via email to admin@childrensheartbeattrust.org.  Please email with the caravan location you want to stay in and dates.

The Children’s Heartbeat Trust has two caravans available for the use of families in Northern Ireland. It can be difficult to travel far with a sick child and so these caravans provide a welcome opportunity to enjoy a break close to home!

The two caravans are situated at Windsor Caravan Park, Dundrum Road, Newcastle and Causeway Coast Caravan Park, Clare Road in Ballycastle.

The caravans are both have 1 x double bedroom, and 2 x twin bedrooms, as well as a living area, dining area and kitchen. Each caravan also has a television in case it rains! The kitchens are stocked with, cups, plates, glasses and cutlery.

Families need to bring their own bedding, (sheets, pillows, quilts, sleeping bags etc,) tea towels and towels.

The cost is £50.00 per week which runs from Saturday to Saturday. The caravans are also available for weekends or long weekends from April to June and September, but only if not booked for the week. Weekends not available during July and August.



Press Release: Lack of transition arrangements increasing risks for heart children

January 21st, 2014

Below is the charity’s response to the story that’s making the news today about the local family’s terrifying air ambulance journey to England…

Lack of transition arrangements now risking lives of heart children

Speaking following the news of the McGinn family’s experience on an air ambulance to England, Sarah Quinlan, Executive Officer, Children’s Heartbeat Trust said:

“It is unacceptable that a critically ill infant and their family should have to go through the ordeal of being transported on an air ambulance which experiences engine failure during the flight. The story is all the more shocking and frightening as the type of surgery their son Laochra required could take place in Belfast, meaning the journey was unnecessary to begin with.

“This entire debacle demonstrates the cavalier attitude to the provision of paediatric congenital heart surgery by health officials. The simple and unanswered question remains – why was a child transported using air ambulance when the procedure could have been carried out in Belfast or Dublin?” she added.

News of the event comes just over one month after the Health Minister’s statement to the NI Assembly where he announced the appointment of international paediatric cardiology experts Dr John Meyer and Dr Adrian Moran to examine the provision of an all-Island surgical network.

“These events undermine the statement given by the Minister on the 9th of December which said that interim measures would ensure surgical services in Belfast would be supported and that details would be finalized in the next few days. Just over one month after that announcement, a child’s life was placed in jeopardy because these arrangements are either not in place or are being ignored,” said Sarah.

“We are today seeking an urgent meeting with the Health Minister to discuss the implementation of interim arrangements and for the suspension of the air ambulance involved in this particular incident while a full investigation is undertaken. Only then can families have faith that this will not happen again.

“Without the deft work of the pilot, we could have been dealing with the aftermath of an absolute tragedy. The lack of appropriate arrangements is now risking the lives of heart children and they need to be introduced urgently,” she added.


January 15th, 2014

Unfortunately the North Belfast and Jordanstown family support group due to meet this Saturday at Barista Coffee House has been cancelled.



January 15th, 2014

The next Lurgan/Craigavon Family Support Group Meeting will be at the Jethro Centre on Saturday 25th January at 2pm.

This is a great opportunity to meet other local Heart Families and share your thoughts and experiences over a cup of tea and a biscuit!

For more information you can contact your local Family Support Coordinator, Mary Gowdy on 028 9265 1086

All are welcome!