International Assessment Team visit

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

Networks

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

Easter Mid-Ulster Support Group Meeting

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

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.

 

Mum’s Pamper Party!

March 24th, 2014

Mummies, manis, massage and munchies….what better way to spend a Sunday?!

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Our first Pamper Party was a great sucess and flow studios was such a lovely venue for a relaxing afternoon tea with a little bit of well deserved pampering thrown in!

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It was brilliant to see so many mum’s on the day and lovely for them to get to meet other mums that have families affected by heart disease. After getting to know each other over lots of tasty treats and bottomless cups of tea and coffee our mums were treated to a relaxation session, manicure and mini massage to help them to relax and enjoy thier afternoon off!

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Huge thank you to our lovely Glam Squad from BMC Whiterock, Busy Bees massage, Eleanor and Katie at Flow studios, Stefs Angel Cakes and Karen and Denise from Barista who very kindly donated all of our tasty treats!!

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Music Therapy workshops for heart families!

March 4th, 2014

Car Boot, Poultry & Craft sale; 5th April; Killylea Church Hall Car Park

February 27th, 2014

Come along to Killylea Church Hall and Car Park to grab your self a hidden gem and a bargainat this charity Car Boot and Craft Sale!

For more details contact Alwyn Bloomer on 07875445500

Sr Alison Kearney is retiring

February 25th, 2014

 

Ward Manager of Clark Clinic, Alison Kearney is retiring in April of this year. Alison has been Ward Manager in Clark Clinic for the past 28 years and has nursed and overseen the care of thousands of heart babies and children. We at the charity will miss her greatly, as will all the patients and families who have benefited from her compassion, care and skill.

Although we are very sad that she is leaving, we wish Alison a relaxing and restful retirement with her family. In recognition of Alison’s work and care for our heart family we would like to give her a special gift.

We are putting together a book of memories, stories and thank you’s for Alison, but we need you to help us make it really special. Please send us stories, pictures, memories, thoughts or thanks that you would like to be included in this book, that we will then present to her on her retirement.

Please  email pictures, stories and memories to sarah@childrensheartbeattrust.org

 

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

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ArtBeat Comp Rules