Archive for the ‘News’ Category

Annual Golf Day at Holywood Golf Club

Wednesday, April 9th, 2014

This year’s Golf Day in aid of Children’s Heartbeat Trust will take place on Friday 5th September at Holywood Golf Course.

The annual 4 ball competition will begin with breakfast in Holywood Golf Club, as well as lunch once a few rounds get underway. The days sporting efforts will be followed by evening entertainment, a disco, raffle and auction, which everyone is welcome to attend.

Lots of local golfers have been very kind to donate items for the auction and raffle, as well as a generous donation from Glenmuir who have not only donated some shirts but have also offered all our supporters an exclusive 10% discount code off their entire range at using voucher code ‘heartbeat’.

The competition itself is limited to 104 golfers so make sure you secure your place by contacting Stuart Cameron at or Robert Taylor on 07734877729 /



International Assessment Team visit

Monday, April 7th, 2014

The independent assessment team tasked with looking at the current and future needs for cardiology and cardiac surgery for congenital heart disease in N.I and ROI are in town this week.  The team consists of Dr John Mayer, Chair in Cardiovascular Studies at the Chidlren’s Hospital, Boston; Dr Adrian Moran, Consultant Cardiologist from the Maine Medical Centre USA; Dr John Sinclair, Consultant Cardiac Anaesthetis and Intesvist at Yorkhill Children’s Hospital, Glasgow.

We are meeting with them on Wednesday morning to put forward the key issues that we have been campaigning about since Easter 2012. These include;

Safety & Emergency

Impact on children and young people with heart disease and their families

Cardiology – maintaining skills & expertise


Positive future for all affected by congenital heart disease in N. Ireland.

Easter Mid-Ulster Support Group Meeting

Wednesday, March 26th, 2014

The Easter Meeting for the Mid-Ulster support group will be on Sunday 6th April at Cookstown Leisure Centre from 3 – 5pm.

There will be a guest appearance from ‘Kate the Clown‘ who will join us to entertain the kids, while mums and dads can just sit back and relax.

We might even get to see a special Easter bunny with plenty of eggs for all!

Join us on Sunday 6th April for a real treat for the Kids!

Holidays & Travel Insurance

Tuesday, March 25th, 2014

Below is updated information about Holidays & Travel Insurance companies recommended by other heart families.

Please note that the charity does not endorse or work with any of these companies and we cannot guarantee that they will be suitable for your child’s individual needs.


Music Therapy workshops for heart families!

Tuesday, March 4th, 2014

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

Friday, 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

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

Monday, 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

Friday, 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 to get the competition or the competition and rules can be downloaded  here


ArtBeat Comp Rules



CHD Awareness Week 2014 7 – 14 February

Friday, 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

Friday, 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  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.