KUALA LUMPUR, July 15 — Childbirth is among the most joyous and invaluable human experiences, especially if it’s the first child.

However, when a child is born with a congenital disease, it immediately turns the happy occasion into a devastating event filled with distress and anxiety.

That was the case for Eric Tan Chin Zhia, who had no clue about congenital diseases. So he was caught by surprise when his only child was born with a serious heart disease in July 2015.

Prior to the incident, the software project manager had no general knowledge about congenital heart disease and didn’t know how he should handle the situation.

Recalling the stressful moments, Tan said when his son was born, the doctor noticed abnormal heart rhythm and low oxygen levels.

"They had to admit him and monitor his condition and after reconsideration, I was advised to take him to KPJ Damansara Specialist.

"He was there for a couple of days to undergo several diagnosis tests to find out the root cause of his condition before it was confirmed he had a heart problem.”

Tan, 42, was then advised to take his son to the National Heart Institute (IJN) or a private hospital with the necessary facility to operate on his child.

Due to the long queue at IJN, Tan’s son ended up at a private hospital in Kuala Lumpur which came at a hefty price tag.

"The hospital bill was mounting and I was running out of funds to save my son, despite receiving donations from family and friends.

"I reached out to Hospital Serdang to see if I could send my son there but they only had 10 intensive care unit beds with nine already occupied.”

The doctor told Tan that the 10th bed was reserved for a patient from outstation, but the patient had not shown up for two days.

"Thankfully, they allowed my son to be transferred there where he underwent his heart operation for his interrupted aortic arch (IAA) complication.”

For the uninitiated, IAA is a rare heart defect where the aorta, which is responsible for carrying oxygen-rich blood to the body, doesn’t form completely.

Had Tan wanted to have his son’s operation at the private hospital, it would have cost him over RM80,000, together with over a month of hospital stay.

Tan, however, said he was lucky enough to get an empty bed from Hospital Serdang (now known as Sultan Idris Shah Hospital, Serdang) which cost him a mere RM500.

"The total cost of operation and admission at Hospital Serdang came up to around RM100,000 but thanks to the government subsidies, Malaysians only need to pay RM500,” he added.

Journey to create change

The distressful event sparked a desire in Tan to help other children born with similar conditions to his son.

"After going through such a challenging ordeal, I felt a profound sense of responsibility to help others with similar conditions needing assistance.”

Following his son’s operation, Tan was approached by the surgeon, Datuk Dr Hamdan Leman, with an idea to set up a foundation and provide assistance to families with congenital heart disease for their newborns.

Recognising the need for such a worthy cause, Tan joined Dr Hamdan and they formed the Malaysian Congenital Heart Foundation in 2017 under the Trustees Act with the Legal Affairs Division under the Prime Minister’s Office.

Apart from creating awareness about congenital heart disease, the foundation’s primary goal is to raise funds and support children who require immediate surgery for their condition.

By doing that, Tan said the foundation also helps to off-load some of these patients on the government hospital’s waiting list by accommodating the operation at private hospitals.

"To date, we have sponsored over 15 congenital heart patients since 2020 with each surgical operation costing approximately RM50,000.

"We have also provided financial assistance to 300 families since 2017, while also donating equipment such as pacemakers and congenital heart disease rehab tools to government hospitals,” said Tan who is also the foundation’s chief executive officer.

The foundation will also be hosting a charity run called Heart Heroes on August 17 at Universiti Malaya Arena to raise funds for its ongoing efforts.

Paediatric surgeons shortage

One of the contributing factors to the long queue for congenital heart operations at government hospitals goes back to the lack of paediatric surgeons in the country.

According to Pantai Hospital medical services and liaison head Dr Ridzuan Razak, there are only a handful of paediatric surgeons specialising in congenital heart disease in Malaysia.

"Among these few, some surgeons are attached to the private sector, hence there is a shortage at the government hospitals with a long waiting list of patients.”

Dr Ridzuan said most of the patients may not be able to afford the surgical cost at private hospitals as insurance does not cover congenital cases.

"Therefore, we have been working closely with the Malaysian Congenital Heart Foundation to help some of these cases and also reduce the load on the government hospitals’ waiting list.”

Recently, the hospital had a four-year-old case from Sabah who needed to be operated on for his ventricular septal defect.

"We managed to get RM50,000 donations from Gas Malaysia Berhad and some funds from Shangri La Hotel to operate the child and cover the operation cost.”

To help these cases, Dr Ridzuan said they get in touch with various paediatric doctors to source for congenital heart patients who need immediate surgery but require assistance.

"We try to help them before they go on the government hospitals’ waiting list and raise funds to operate them.”

From last year until now, Pantai Hospital Kuala Lumpur has managed to successfully raise funds and operate on six congenital heart patients through the foundation and private donors.