Artist’s Point of View:

I am Kylie Boo Kai Ni, 22 years old. I am currently studying in Republic Polytechnic, Diploma in Arts and Theatre Management. I was born with Corrected Congenital Transposition of Great Arteries (CCTGA).  Due to the complexity of my heart, I was unable to receive the ideal treatment but instead, I did a Fontan Procedure in 2017, performed by Dr Loh Yee Jim. I was then transferred out of KK hospital in November 2018.

For the past 20 years, the CCTGA condition was challenging for me. After the first operation I did when I was an infant, there was a mandatory procedure waiting for me in the next part of my life. During the period of postponement, I experienced emotional challenges. Mainly due to my incapability of performing physical exercises in my primary and secondary school days.

I was outcasted by my schoolmates and the teachers were no exception. They do not understand what was wrong with me, so they did not explain to my classmate about the special treatment I was receiving – taking lifts instead of stairs, being exempted from partaking in any physical activities or NAPFA tests. The resentment from my peers piled up due to the lack of communication.

The insensible acts of my schoolmates disturbed my life. My conditions were worsened and as a result of admitting and discharging from the hospital repeatedly, I transformed from a bubbly girl to a dull person who almost fall into depression, just to stay immune to the situation I was in. Fortunately, I met my art teacher who constantly gave me opportunities to express my emotions through visual arts. He took me to several national and international competitions such as sculpturing, murals and floral designs. After winning a fair share of awards, I found myself at peace more so than ever. I found a calling.

After the Fontan procedure was completed, I decided to be a voice for patients that might have went through similar underserved situations who are still hidden in the dark. I want to be the medium between them and the general public.  By weaving their stories and plights into visual arts I create, it will allow all their heartfelt words, their desire to be a normal person as well as the unfair treatments they faced to be voiced out and made public.

I will be illustrating 15 different congenital heart diseases. The following list would be the conditions that I will be focusing on in this upcoming project.

Congenital Heart Defects:

Aortic Valve Stenosis
Coarctation of the Aorta
Ebstein’s Anomaly
Patent Ductus Arteriosus
Pulmonary Valve Stenosis
Septal Defects
Atrial Septal Defects
Ventricular Septal Defects
Single Ventricle Defects
Tetralogy of Fallot
Total Pulmonary Venous Connection
Transposition of Great Arteries
Truncus Arteriosus
Corrected Congenital Transposition of Great Arteries
Normal Heart – Dream

Social Issues

Heart defect patients are unable to do any vigorous activities such as running, climbing stairs, playing sports, etc. Hence, since young they were often outcasted by their friends while they are having games like hide-and-seek, catching, etc. As these patients looked normal on the outside, sometimes their friends are not able to show empathy or concern towards their well-being.

A report stated that, in every 100 babies were born, there will be one who born with heart conditions, and within this percentage, there must be one or two of them who were born cyanotic. Babies with cyanotic heart defects requires treatment since the day they were born, many of them needs to receive lifelong treatments such as surgeries, medications, etc.

However, due to the lack of knowledge in the general public, these patients are usually being ignored and do not dare to voice out just because they hoped to be a normal person. Some of them just endured their way through their adulthood or until they received the best treatment. Yet, not every patient is so lucky to receive the best treatment, some they will have to live quietly behind the scene and do certain activities that are out of their ability.

Objective:

The main objective of illustrating 15 different heart conditions is to spread the awareness of congenital heart defects to the public, focusing on cyanotic and acyanotic heart conditions. These patients who have been suffering from congenital heart defects since they were born are often being discriminated against and treated unfairly by society. As they look normal on the outside, hence there are rarely people know about their conditions, it is unfair to them to be treated normally, yet they are too healthy to be treated as a physically disabled person.

This project is to help them in voicing out their thoughts and their wounded mental health. Educating the public to shape a better society in Singapore.

Impact On the Audiences:

By looking at these 15 different heart defects, the audience should be able to relate themselves emotionally to these patients. Some of these audience may be the relatives of these patients and some may be the patient themselves. The hardship that they have went through should be voiced out to the world and create awareness on their natural heart defects. Not only to target the younger ones but also to inform those adults whom has employees or friends of the same circumstance.

For the younger generation who are deemed to be having a lack of empathy could also learn from these artworks. Encountering congenital heart defect patients are very common. There could be one or two in their class that has been neglected. Through this educational gallery / exhibition, one would be able to empathize and show compassion.

The victims of heart condition can also understand that they are not different, they can dream too. This visual art campaign would be effective and sympathetic.

Finally, they can be remembered.