Congenital heart disease is one of the leading causes of death of Australian babies aged under one year and among the most common birth abnormalities, affecting one in every 100 births, according to national health charity HeartKids.
Eight babies on average are born every day with the disease, for which no cure yet exists, and four lives are lost each week. It’s a complex chronic disease requiring lifelong treatment.
In the February issue of Retail Pharmacy Assistants magazine, we spoke with HeartKids CEO Fiona Ellis about the organisation and how pharmacy assistants can support affected families.
Tell us about HeartKids and how the organisation supports parents, families and children with heart issues.
HeartKids provides dedicated, quality support services to parents, carers, young people, adults, and ‘Heart Angel’ families [those who have had a child die from congenital heart disease].
We provide practical information and education, referrals to relevant services, and share information relating to available local services. HeartKids’ support staff also collaborate with allied health services, connect families with the NDIS, the Department of Human Services, indigenous liaison and other organisations and bereavement services.
We provide connection to other families and peers who understand the realities of living with congenital/acquired heart disease. We provide direct emotional support and practical support, which includes meal assistance, patient travel and accommodation assistance.
We also have a national HeartKids helpline service that enables us to continue to meet community demand, along with the launch of webchat and SMS options for helpline assistance.
What are the common heart conditions that can affect children?
There are many different forms of congenital heart disease (CHD). The best reference is our website’s ‘The Facts’ resource here.
In approximately 80 per cent of CHD cases, the cause is unknown. Some of the known causes are genetics – 20 per cent of cases have a genetic cause – illness during pregnancy, medications, age, other birth defects, smoking, drinking or taking drugs during pregnancy, diabetes, or poor nutrition during pregnancy.
What are the signs of heart problems in children?
CHD may initially be detected during a routine ultrasound scan of the baby in the womb. Specialist ultrasound, or foetal echocardiography, will then be carried out at around 18 to 22 weeks of the pregnancy to try to confirm the exact diagnosis. Serious congenital heart defects are usually noticed soon after birth or during the first few months of life.
Signs and symptoms could include:
- Pale grey or blue lips, tongue or fingernails (cyanosis).
- Rapid breathing.
- Swelling in the legs, belly or areas around the eyes.
- Shortness of breath during feeding, leading to poor weight gain.
Less serious congenital heart defects may not be diagnosed until later in childhood. Signs and symptoms of defects in older children may include:
- Easily becoming short of breath during exercise or activity.
- Easily tiring during exercise or activity.
- Fainting during exercise or activity.
- Swelling in the hands, ankles or feet.
Your child’s healthcare provider can advise whether your child’s symptoms are due to a heart defect or another medical condition.
How can parents help improve their child’s heart health? What is the role of diet and lifestyle here?
This research study link is an excellent source of information on this topic.
What is the role of pharmacy assistants in this space?
Referring families to our national HeartKids helpline, where staff can offer information about CHD, referrals to services, and practical assistance for things such as preparing for hospital. The helpline staff can also connect families and individuals to their local HeartKids family support team for one-on-one assistance and peer support.
In addition, we encourage those impacted by CHD to access our national CHD directory [which was scheduled to be live to the public from January 2023].
At which point is it important for pharmacies to refer to specialists and/or GPs for ongoing support?
If they spot any of the above signs in children.
To learn more about HeartKids and how your pharmacy can help in the CHD space, visit: heartkids.org.au.
