Archive for the ‘News’ Category

Building work due to start for new Children’s Heart Centre

Wednesday, March 29th, 2017

2017 will see the development of a much-needed Children’s Heart Centre at the Royal Belfast Hospital for Sick Children.  This centre is a key component of the new all-island Congenital Heart Disease (CHD) network and is required to ensure the provision of high quality CHD services in Northern Ireland within the new North-South partnership.   The improved facility will deliver crucial aspects of the ongoing care for children with heart defects, including the provision of segregated specialist outpatient clinics, imaging services, day procedure cases, a research and telemedicine hub, as well as specialist diagnosis and treatment for babies and children.

Children’s Heartbeat Trust have been involved in the development of this project since its conception and have pledged to donate £100,000 to ensure the area is child and family focused, providing a world-class service to heart families across Northern Ireland.  The charity has previously delivered a similar project with the Children’s MRI Scanner Unit and has seen the positive impact additions such as sensory equipment, innovative lighting, bright murals and a child centred environment can make to a minimalist, clinical space.   Such child-friendly environments are proven to relieve the stress and tension of hospital visits for both the child and their families.

Work is due to commence in April 2017 and the first stage will be to build a separate administration block in the grounds of the RBHSC which will house all the administrative, specialist and consultant offices, as well as the tele-medicine and research hub, which are currently squeezed into the ground floor of Clark Clinic.  The second stage will then be an extension to the ground floor of Clark Clinic to accommodate the expansion as per plans below, however there will be no change to the Clark Clinic ward on the first floor.

We imagine there will be some disruption during this building work so keep an eye on our social media and website for all updates.








Information About Mycobacterium Chimaera

Tuesday, March 21st, 2017

Parents and guardians of children who have undergone heart surgery may have received a letter from the Belfast Trust concerning the very low risk of an infection called Mycobacterium chimaera. Below is some further information we have collated for heart families.

Information on Mycobacterium Chimaera

What is Mycobacterium chimaera and why have I have been contacted about it?
Mycobacterium chimaera is a rare bacterium. There is a very low risk that it may have contaminated certain heater-cooler devices used to regulate body temperature levels during open heart surgery.

What is the risk?
The overall risk of clinical infection during open heart surgery is deemed to be very low. Worldwide there have only been two cases documented in children. However, heart parents should be aware of the signs and symptoms of any potential infection, what to look out for and what they should do. The symptoms can take a long time (possibly several years) to appear and unfortunately there is no test to tell if a patient will develop symptoms in the future.
When you next visit your child’s GP, make sure they know your child has had open heart surgery and that this is included in their medical record.

What to look out for.
The signs or symptoms of endocarditis can be associated with the infection. You should contact your GP should your child have any of the below symptoms;
– Unexplained fevers
– Unexplained weight loss
– Increasing shortness of breath
– Night Sweats
– Joint or muscular pain
– Nausea, vomiting or abdominal pain
– Abnormal levels of tiredness/ fatigue
– Pain, redness, heat and/or pus around the surgical site
If your doctor thinks it is important to test your child, a blood sample will be taken. Please note that these symptoms can have many different causes and are unlikely to be due to a Mycobacterium chimaera infection. In the event that your child does have a mycobacterial infection, your GP will refer you to an expert centre and a course of treatment agreed.

What actions have been taken?
An international safety notification has been issued to inform medical staff of the existence of this bacterium so they will know to include it in testing if a patient presents with symptoms of endocarditis.

Who to contact if worried.
Contact your GP who has been advised of the appropriate action but if you want to speak to someone from the Belfast Trust, an Advice Line will be operating from
– 10am until 9pm on Tuesday 21 March 2017
– 9am until 6pm on Wednesday 22 March 2017 until Friday 24 March 2017
The number to contact is 028 9063 0500

My child has had open heart surgery, why have I not been contacted about this infection?
If you have not received a letter, the Public Health Agency has deemed that your child is at minimal risk of exposure to this infection.
Children’s Heartbeat Trust would advise that all heart parents are aware of the symptoms of endocarditis and if concerned about your child for any reason, attend your GP as normal.



Sir AP McCoy joins starting gate for Children’s Heart Centre

Wednesday, March 15th, 2017


McCoy joins the starting gate for new Children’s Heart Centre


Children’s Heartbeat Trust are holding an exclusive dinner with World Champion Jockey, Sir Anthony McCoy in Belfast City Hall on 21st April.


The most successful jockey of all time, Sir AP McCoy, will be the special guest at an exclusive dinner in Belfast City Hall on the 21st April to help raise funds for a new Children’s Heart Centre at the Royal Belfast Hospital for Sick Children.



The Moneyglass man was Champion Jockey a record 20 times and won some of the world’s most famous races including the Cheltenham Gold Cup, Champion Hurdle, Queen Mother Champion Chase, King George VI Chase and the Grand National. The event will be an intimate evening with Sir AP McCoy, where he will tell the inside stories about his life and career as one of the world’s most successful and dedicated sportsmen of our time.



Organised by local charity, Children’s Heartbeat Trust, ‘An Evening with Sir AP McCoy’, will raise funds for the new Children’s Heart Centre in Belfast which will be a dedicated centre for the care and treatment of children and young people with congenital heart disease. Over two hundred babies are born with a congenital heart defect each  year in Northern Ireland and many will have to face open heart surgery and ongoing treatment for their complex condition.  Children’s Heartbeat Trust is a chosen charity of the Deputy Lord Mayor, Cllr Mary Ellen Campbell, and this exclusive dinner is one of the special events being held at City Hall during her year in office.



Speaking at the launch, Sarah Quinlan, Chief Executive, Children’s Heartbeat Trust, said: “We are delighted to host an evening with 20 time Champion Jockey Sir AP McCoy at Belfast City Hall with kind permission of the Deputy Lord Mayor, Councillor Mary Ellen Campbell. We have all followed AP’s career, and may have even won a few bets with his successes, and are thrilled he’s returning home to share his sporting stories with us.



“The goal of this exclusive evening is to raise vital funds to create a child and family centred environment at the new Children’s Heart Centre which is being built at the Royal Belfast Hospital for Sick Children. The new facility will deliver high quality services for hundreds of heart children in Northern Ireland, matching the world leading care already provided by our doctors and nurses.”



Children’s Heartbeat Trust is a local charity that delivers practical and emotional support to children and young people with heart disease in Northern Ireland their families.  The charity has been involved with the development of the Children’s Heart Centre since its conception to ensure that heart children and their families continue to receive the best quality care and treatment possible.


An Evening with Sir AP McCoy takes place in Belfast City Hall on Friday 21st April. Tickets are available for purchase by contacting Lynn Cowan on 028 9031 2228 or 



Co-op Local Community Fund

Monday, February 20th, 2017


Children’s Heartbeat Trust have been selected to receive funding from the Co-op Local Community Fund.

The more support we get, the more funding we could receive. So if you’re a Co-op Member log in to your Co-op Membership account and choose us as your chosen charity. If you’re not a member, please join and support us!

How it works

Every time Co-op members choose Co-op branded products and services and use their Co-op Membership card, 1% of what they spend will go to their chosen cause.

Members can change their choice at any time until the end of the giving period on 18th March 2017.

If members don’t pick a cause during the giving period then their 1% is shared out equally between all the local causes in their community.

Any funds raised for Children’s Heartbeat Trust will be distributed to the charity after the end of the giving period.

If you’re not a Co-op Member you can join by signing up via:

You will then be able to support our work.


There are a select number of Co-op Stores and funeral homes that will be supporting our cause specifically and these are listed below:

Food: Abbots Cross – BT37 9QT
Food: Whitewell Road – BT36 7NH
Funeralcare: Glengormley (P) – BT36 7UA
Funeralcare: Browns Houston & Williamson (P) – BT37 9RU
Funeralcare: Mulhollands of Carrickfergus (P) – BT38 8BL
Funeralcare: Bairds of Antrim (P) – BT41 4BE

Please support these in anyway you can with your membership card.


An evening with Sir Anthony McCoy

Wednesday, February 8th, 2017

Children’s Heartbeat Trust is delighted to host an evening with 20 time jockey, Sir AP McCoy at Belfast City Hall, with kind permission of the Deputy Lord Mayor Councillor Mary Ellen Campbell on Friday 21st April.

The goal of our exclusive evening with Sir AP McCoy is to raise vital funds to create a child and family centred environment at the new Children’s Heart Centre which is being built at the Royal Belfast Hospital for Sick Children.  The new facility will deliver high quality services for heart children in Northern Ireland, matching the world leading care already provided by our doctors and nurses.

The evening will include a drinks reception, 3 course evening meal, Q & A with all time champion jockey, auction, raffle and music.

As part of our evening we have developed exclusive sponsorship packages for businesses and corporates who would like to get involved. These will give patrons a wonderful and high-class evening with the international sports star.  Please contact Lynn on the details below for more information.

Tickets are available to purchase through or by calling 028 9031 2228.

Tickets cost £80 per person (tables of 10)

Children’s Heartbeat Trust supports the Fetal Cardiology team at Clark Clinic

Tuesday, January 17th, 2017

Fetal Cardiology folders

Dr Ranj ECHO Song

Monday, January 16th, 2017

Dr Ranj ECHO

Check out this super catchy ECHO song that Lorraine and Fiona from Cardiac Investigations at RBHSC told us about! Some children can get very upset at the thought of a hospital visit of any kind but hopefully this song will help to turn an ECHO scan into a bit of an adventure for them! Click HERE to watch and listen to Dr Ranj’s slick performance!!!

Join us for ROCK RED FRIDAY!

Friday, January 13th, 2017



This February is the return of our ROCK RED FRIDAY event where we encourage everyone to get involved by wearing red and helping to raise awareness and funds for our work with local heart children.

We’re calling all schools, youth clubs, organisations, businesses and individuals to get involved. Simply wear red, raise awareness and donate £1 to Childrens Heartbeat Trust.

Please feel free to post us your rock red images to facebook and twitter using the hashtag #RockRedFriday


For a fundraising pack, please email or call 028 90312228.


Paediatric First Aid Course

Wednesday, January 11th, 2017


Our next Paediatric First Aid Course with REC First Aid Trainers N.I is taking place from 9am – 5pm on Saturday 18th February 2017,  Brownstown Community Centre, Portadown.

This is a fully certified 1 day course and is free to all heart families living in NI and have a child with heart disease. The feedback from this course has been fantastic with families describing the course as “Excellent hands on training, gave us the knowledge and confidence to be able to perform first aid if needed.”

Due to the nature of the training, spaces on the course are limited so if you are aged 16+ and would like to take part please don’t hesitate to book your space by emailing: or call 07436589480.

Take a trip around the new MRI Scanner unit at the Children’s Hospital

Tuesday, January 10th, 2017




Watch the youtube video below to see how the £2Million by the Children’s MRI Scanner Appeal has been put to use with the wonderful new MRI Scanner Unit at the Royal Belfast Hospital for Sick Children.