HAPPY LITTLE HEARTS FOR LIFE
2021-2024
General Overview
Children with congenital heart disease face significant challenges throughout their lives. Despite successful initial surgeries or procedures, all require ongoing follow-up during childhood, with 10-15% needing further procedures due to cardiac defects. Without timely intervention, these children risk a reduced quality of life or decreased lifespan. Beyond physical needs, holistic care, including psychosocial support for both the children and their families, is essential. Addressing these needs is crucial to improving their overall quality of life and extending their lifespan.
Dews of Joy – KK Women’s and Children’s Hospital (KKH)’s “Happy Little Hearts for Life (HLHL)” program, launched in 2021, aims to reduce the mortality rate and improve the quality of life for children with congenital heart disease by ensuring they live longer, happier, and healthier lives. The program addresses critical needs by providing timely medical interventions as well as holistic care, including psychosocial support for both the children and their families.
Main Areas for Holistic Care under HLHL
In order to provide a holistic enhanced care programme for the paediatric patients that will enable them to achieve their full potential, the main areas depicted in the visual above will be covered in a patient’s journey
Progress to Date
Providing Financial Assistance to Patients in Need
As of April 2024, HLHL has provided financial assistance to four congenital heart patients, covering the expenses for their equipment, consumables, and special diets post-surgery. Additionally, HLHL has utilized 3D printing for 10 patients to better understand the three-dimensional anatomy of their hearts, aiding in more accurate intervention and diagnostics.
Organising Patient Support Conferences
As part of providing holistic care to our patients with congenital heart disease, HLHL will be organizing a support symposium in 2024. The topics which will be covered in the symposium will be
1. Exercise and Activity or
2. Single Ventricle Survivorship Programme (children with complex heart needing multiple surgeries)
Developing Educational Tools and Resources
HLHL has successfully produced an illustrated book titled “Getting Ready for A Heart Operation”, designed for children aged four to eight with congenital heart disease who are preparing for their first surgeries. The book aims to ease their fears and prepare them for cardiac surgery or procedures. It is part of a medical play kit, which has already benefited 20 patients and their families. Feedback from parents has been positive, with many appreciating how the resources helped their children understand the procedures better and feel more prepared. A total of 100 copies of the book have been produced.
In addition, HLHL partnered with Republic Polytechnic’s Media School students to produce an animated journey for cardiac patients, guiding them from admission to discharge. This interactive media experience is designed to ease children’s anxieties as they prepare for cardiac surgery or procedures, offering an engaging journey through animation. Patients and families will be able to access the media experience by scanning a QR code on posters displayed around the KKH Cardiac Centre.
Advancing Research and Education
In line with the broader objectives of the HLHL Programme to improve the quality of life for children with complex congenital heart disease, a neurodevelopmental follow-up programme was initiated in April 2019. This programme involves systematic screening and assessment of development, learning, and behaviour problems. Between April 2019 and February 29, 2024, 123 patients were referred, with 102 (89%) completing their developmental assessments at the Department of Child Development (DCD) between 6 and 36 months of age. A total of 88 patients have been recruited into the research programme, with preliminary data available for 63 patients, including 18 who were followed up until 36 months. The programme has significantly benefited children by enabling early identification of developmental delays and referral to early intervention services, resulting in marked improvement in developmental trajectories for those who continued with the follow-up. Below are some key results gathered to date:
Child Life Therapy
In addition to providing practical assistance with medical expenses, HLHL recognizes the importance of addressing the mental health needs of our patients. Beginning in 2022, 20 patients were referred to our Child Life therapists for two sessions each—before and after their operations—with the costs absorbed by the department as a goodwill gesture. These therapists focus on enhancing the psychological well-being of both the children and their families, aiming to facilitate a smoother recovery process post-surgery.
Over the past year, six additional patients have been referred for these sessions, with the costs borne by the patients. These patients also provided positive feedback, noting that “the resources and prep sessions have been helpful and useful” and that “the resources helped parents understand the procedure themselves and learn how to talk to their child about it.” As the benefits of Child Life Therapy services become increasingly evident in supporting our patients throughout their cardiac journeys, we aim to encourage more patients to utilize these services. To achieve this, the services will now be made available at no cost to the patient, with expenses covered by the program’s budget, ensuring that all patients have access to these services regardless of their financial status.