Media Centre
Heart Children New Zealand under the international spotlight
2 February 2010
Heart Children NZ’s CEO and President of the International Congenital Heart Disease Coalition (ICHC) Lara Syddall will be a keynote speaker at the 1st Pancyprian Congenital Heart Defects Congress with International Participation in Cyprus this week.
Held from 5-7 February the Congress will focus on many issues that impact lifelong care for those affected by congenital heart defects (CHD) worldwide.
Syddall will also meet with Minister of Health Christos Patsalides at the invitation of the Cypriot government.
It’s a week which will see Heart Children New Zealand and the lifelong services it provides to children with heart disease and their families deservedly under the international spotlight.
“Being able to offer over 50 services to our members is something I am extremely proud of,” says Syddall. “The tangible benefits of our work are evidenced in so many ways. I believe when hospitals, government agencies and member organisations such as Heart Children NZ, work closely together, anything is possible.”
“While we still have work to do in terms of some of these relationships, the successful implementation of so many services is a huge testament to the dedication of medical staff and those who support Heart Children so generously.”
Syddall will meet with Patsalides to discuss Heart Children’s CoaguChek programme; a programme which ensures all heart children prescribed the blood thinning drug Warfarin have access to a CoaguChek home testing machine.
Children prescribed Warfarin must endure regular blood tests. In severe cases this can be a daily trauma. The CoaguChek machine eliminates the need for blood tests taken through the vein. A prick of the finger accurately measures the thickness of the blood to identify the daily dosage of Warfarin required. The CoaguChek machine is small, portable and can be used by the child and their parents/caregivers.
Wellington’s Nicholas Ward (14) was part of the first group of heart children to receive a machine under Heart Children’s CoaguChek programme.
Mum, Carla Ward, can still remember the trauma of taking a three year old Nicholas for his weekly blood tests.
“Our local hospital would only draw blood from the vein so each week Nicholas was held down on a high narrow bed, usually enduring several attempts to find a vein in his small arm,” says Carla. “Quite often, when attempts failed, we were asked to come back the very next day and try again. Nicholas became so traumatized that light sedation became essential.”
“Within one week of using the CoaguChek at home Nicholas started to come out of his shell. He began to laugh again,” says Carla. “The CoaguChek machine programme quite simply changed our lives.”
Now at 14, Nicholas is completely independent. He can perform the tests himself and interpret his own results.
“Heart Children New Zealand’s CoaguChek Programme has been making the world of difference to
New Zealand heart children, like Nicholas, for many years,” says Syddall. “I’m looking forward to sharing our experiences, processes and protocols with the Cypriot government and several other interested parties.”
Following her meeting with Patsalides, Syddall will speak at the Pancyprian Congenital Heart Defects Congress where she will present data and services from ICHC member countries, including New Zealand.
“It’s one of the long term goals of the ICHC to provide the World Health Organisation, (WHO) with a case for Congenital Heart Disease issues to be part of the WHO agenda,” says Syddall. “The Congress will present an excellent opportunity to highlight the significant impact of CHD across the globe.”
The first round table will focus firstly on the role of fetal echocardiography, (an ultrasound device used to display moving images of the working heart). Other discussions include neurological outcomes following cardiac surgery in children, sudden death in adults with CHD and psychosocial issues as a result of CHD.
A congenital heart defect is the world’s most common birth defect affecting between 4 and 10 per 1,000 live births. In New Zealand this equates to 12 babies born each week with a heart defect; 600 additional children every year.
Heart Children NZ is the sole organisation to provide lifelong support to children affected by heart disease and their families. The organisation began 25 years ago, the legacy of then new Mums, Michelle Mann and Linda Davies who, despite the loss of their own heart children, set about easing the chronic need for parental support and information.
Today Heart Children New Zealand stretches across the nation, providing professional emotional, practical support, information, education, training, advocacy, specialised equipment and friendship to thousands of children, youth, adults and their families.
For more information on Heart Children New Zealand visit www.heartchildren.org.nz.
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Media Release Fact Sheet
1st Pancyprian Congenital Heart Defects Congress with International Participation
1. President of the International Congenital Heart Disease Coalition (ICHDC) and CEO of Heart Children NZ Lara Syddall, will be a guest speaker at the 1st Pancyprian Congenital Heart Defects Congress with International Participation to be held in Cyprus on the 5, 6, 7 February 2010.
2. The Congress’ agenda will focus on lifelong care for those affected by congenital heart defects (CHD) internationally, starting with the role of fetal echocardiography. Other presentations include neurological outcomes following cardiac surgery in children, sudden death in adults with CHD and psychosocial issues as a result of CHD.
3. As the President of the International Congenital Heart Disease Coalition Syddall’s lecture will include data and services from ICHC member countries, including New Zealand.
4. The International Congenital Heart Defect Coalition (ICHDC) empowers international committees to improve lifelong care for those affected and through collaboration improves access to services and support to those in need.
5. One of the long term goals of the ICHC is to provide the World Health Organisation with a case for Congenital Heart Disease issues to be part of the WHO agenda. CHD continues to be the most common birth defect affecting between 4 and 10 per 1,000 live births. In New Zealand this equates to 12 babies born every week, 600 children every year.The larger prevalence figures account for all cases, many of which may be mild and not require active medical intervention.
6. Several members from the World Health Organisation have accepted invitations to the Congress.
Meeting with Cyprus Minister of Health Christos Patsalides/Heart Children NZ’s Coaguchek Programme
1. At his invitation, Syddall will meet with Cyprus Minister of Health Christos Patsalides, (4 February) to discuss the lifelong support services Heart Children New Zealand provides to children affected by childhood heart disease and their families.
2. The Adult Congenital Heart Disease Association of Cyprus (ACHDAC) is working closely with the Cyprus Government to develop programmes and services for those affected by congenital heart disease.
3. Syddall will specifically discuss Heart Children NZ’s CoaguChek machine programme with Patsalides; a programme which ensures all heart children prescribed the blood thinning drug Warfarin have access to a Coaguchek machine.
4. Warfarin is a blood thinning drug taken by many heart children. For children the levels of warfarin required are constantly changing as they grow.
5. A CoaguChek machine is a small portable machine that tests INR levels in the blood with the prick of a finger. (INR stands for International Normalizing Ratio; a measurement of the time it takes for the blood to clot). Medication adjustments to the amount of Warfarin needed can then be made accordingly. Testing strips required are also funded by Heart Children NZ.
6. Children on Warfarin are required to have regular blood tests, in severe cases this can be a daily trauma.
7. Whilst in Cyprus Syddall will meet with several parties to share Heart Children NZ’s experience of the Coagucheck Programme, process and protocols.
8. Heart Children New Zealand’s CoaguChek Programme has been providing support to heart children for many years.
9. Wellington’s Nicholas Ward (14) was born with a heart condition called Tricuspid Atresia, a condition where the tricuspid valve is not formed between the right atrium and right ventricle. Nicholas had no tricuspid valve and two big holes in his heart. His right ventricle usually bigger than the left, was shriveled and useless, unable to pump. Essentially he was missing a functional right heart.
10. Nicholas had his first open heart surgery at eight weeks, at six months and just prior to his fourth birthday. His congenital heart defect will be a lifelong challenge.
11. Nicholas received his CoaguChek machine ten years ago. He was one of the first group of New Zealand heart children to on Heart Children NZ’s CoaguChek machine programme.