The Children’s Heart Disease Research Unit in the Department of Paediatrics and Child Health held a Listen to my heart: Focus on Congenital Heart Disease on 11 March 2017 at the Red Cross War Memorial Children’s Hospital in Cape Town. The purpose of the event was to provide important information to parents and guardians of children, as well as teenagers and soon-to-be young adults living with congenital heart disease.
   
While this event focused on Congenital Heart Disease, it shares many touch points with children living with Rheumatic Heart Disease as they face new and daunting challenges as part of the transition from childhood into adulthood. Adolescent health care is receiving increasing attention as the issues of reproductive health, mental health and making healthy behavioral choices are crucial in these young people’s lives. Many parents, as well as clinicians, are not well-prepared to deal with this transitional period.

The topics covered by the Programme were those raised most often by patients, parents and families and covered school and school performance, sport and exercise, diet, surgery as well as information about the transition to adult medical care.

The programme was facilitated by Professor Liesl Zühlke, Director of the Children’s Heart Disease Research Unit at the Red Cross War memorial Children’s Hospital.  About 50 family members attended and were joined by clinicians and nurses from the paediatric cardiology service.

The programme was comprised of a series of conversations between young patients, their parents and their clinicians.  Important topics such as missing school, fatigue, recovery, and stigma, were covered by a young woman who had undergone a series of open heart surgeries throughout her life. Her strongest message was to parents and teachers to be open and communicate about what the young patient is going through. One of her earliest memories of surgery at the age of 6 was a detailed explanation of her condition from her parents that assuaged many fears and made her feel less anxious.
 
Next, an 11-year old patient discussed sport and exercise with his paediatric cardiologist. Both discussed the value of exercise, fitness and regular sport for all with CHD. This young man, playing for the under-17 team at just 11 years old had recently won the most promising cricket player award from his club. He is a fast bowler but is aware of his limitations and when he tires, he takes a break.
 
A dietician from the Heart and Stroke Foundation of South Africa gave a talk and demonstration on healthy lunchboxes. She focused on healthy alternatives such as whole wheat bread, wraps, hummus, tzatziki and vegetables. She discussed healthier options with takeaways such as only a burger and not the chips, or healthy chicken or stir-fry options – a good lesson for all!

The next speaker explained the concept of transition from paediatric cardiology to grown-up congenital heart (GUCH) clinics at around 13 years of age.  This is an important transition for our patients with acquired heart disease as well since it is also a life-long commitment to regular follow up and adherence to medications.
  
Young women with chronic heart disease – whether it is acquired or congenital - have additional needs during pregnancy.  Combined cardiac-obstetric units are becoming more available where patients can discuss future pregnancies and risks involved.  Chronic heart disease varies in severity and type and possible complications with pregnancy should be explored in advance of pregnancy. The need for open discussion about sex to prevent unplanned pregnancies for the safety of the patient was stressed as was the importance of regular follow-up and hospital visits.
 
The final session was to discuss the impact of CHD on the entire family. The impact of heart disease and cardiac surgery on the child and the family is a life-long journey and the audience was reminded of the importance to discuss this with the siblings and wider family.

This event gave parents, guardians and children a rare opportunity to raise questions and to receive answers and more information from healthcare providers outside of the clinical environment about how CHD impacts everyday life. It also provided the venue for young patients and their families who have undergone cardiac surgery - or are facing it - a chance to meet, share stories and form a support network.

As in the past Listen to my Heart events, feedback from the parents, guardians and children was written on the back of hearts, and people were requested to say what they thought was meaningful in terms of CHD.

Here are what a few of them had to say:

“Please can we look after the sick children because they need support!!”

“More awareness”

“Screening for Congenital heart abnormalities should be part of antenatal clinics”

“Children with heart disease are special, who will grow up to be extra-special”

This event can be used as a blueprint in other parts of the world in that there is a needs gap by parents, guardians and patients for information regarding paediatric heart disease (both congenital and acquired) and everyday life.