Babies with abnormal hearts need extraordinary care

Just 37 days old and Adam Nazafi was already on death's bed. The fact that he is alive today is thanks to the National Heart Institute's (IJN) consultant cardiothoracic surgeon Dr Pau Kiew Kong and his 15-member team who performed a six-hour operation last year, to save his life.

Adam's problem began 11 days after birth. His mother Rosmaniza Ali, 34, found him "blue" one day.

"I took him to Hospital Teluk Intan on July 6 where he was resuscitated and put on a very high ventilator setting," said Rosmaniza.

Resident paediatrician Dr Ng Su Yuen noted that Adam had pneumonic changes in his chest X-ray. A cardiac echocardiography showed a complex congenital heart disease with additional lung infection.

Adam was transferred to IJN where he was ventilated in the intensive care unit. He also suffered kidney failure as well as urinary tract infection caused by a fungal infection.

After being treated with multiple antibiotics and anti-failure drugs (diuretic and digoxin) and later with oral sildenafil to decrease the pulmonary artery pressure, he was finally ready for the surgery, which took place on July 27.

"I am so happy that Adam looks okay now," said Rosmaniza, a teacher, who has two other boys, aged 9 and 4.

She said she never dreamt that her son would have to undergo so much pain and suffering.

"My only wish is that he will be all right from now on and lead a normal life."

Dr Pau said one in every 100 Malaysians was born with an abnormal heart.

The worrying part -- some do not even know they have congenital heart disease and succumb to the disease before the first birthday.

"This is a critical issue because congenital heart disease is the world's most common birth defect," he said.

"With advancement in paediatric cardiac surgery, about 90 per cent of the children with congenital heart disease can be saved," he told the New Straits Times.

He said there was a need to create awareness among the people and doctors of the various types of congenital heart diseases, the mode of treatment and surgeries.

IJN conducts symposiums for paediatricians, general practitioners, cardiologists, cardiac surgeons, anaesthetists and allied healthcare professionals on management of congenital heart disease with live surgery demonstrations.

"The live surgery demonstrations are to provide the audience an opportunity to see how cardiac surgery will help many of these patients with congenital heart disease," Dr Pau said.

He said this would give the participants who come from government and private hospitals and universities the opportunity to tap the knowledge and in-depth experience of IJN specialists.

Besides Dr Pau, the IJN specialists include chief cardiothoracic surgeon Datuk Dr Mohd Azhari Yakub, and consultant cardiothoracic surgeons Dr Hew Chee Chin and Dr Sivakumar Sivalingam.

"We have the expertise, facilities and a highly trained team to undertake all forms of congenital heart disease. We have performed some 8,000 surgeries over the last 13 years," he said.

Last year, IJN performed 141 cases compared with 712 in 2006, 650 in 2005 and 567 in 2004. The number is expected to increase this year with four consultant surgeons handling congenital heart disease surgeries.

As IJN has a waiting list of some 400 cases, some parents turn to private hospitals.

One such case was that of 1-month-old Lim Jing Tong of Johor Baru who had pulmonary atresia, a condition where the lungs do not receive enough blood and oxygen.

Jing Tong's father, Lim Tian Soon, 36, a furniture repairman said doctors in Johor Baru realised something was wrong two days after Jing Tong was born.

The child also had two holes in the heart.

"We took him to IJN on Nov 14 last year and he was admitted for seven days before the doctors told us to take him back to Johor. It broke our hearts," said Lim. They then decided to take Jing Tong to Gleneagles Intan Medical Centre in Jalan Ampang.

There they were told that he required multiple corrective surgeries.

"The surgery would have cost RM20,000. We didn't have that kind of money, so we turned to the media for public help," said Lim.

Jing Tong successfully underwent the first surgery and was waiting for the second operation when he died on Feb 17.

In another case, 9-month-old Balqis Juhari who was put on a two-month waiting list at IJN in September last year just to see a doctor, successfully underwent surgery at Gleneagles on Jan 30 and was discharged on Feb 12.

Balqis who suffered from a congenital heart disease at the age of 2 months, was referred to IJN from Kuala Lumpur Hospital.

Norfizah Mansor, 39, said her daughter was 7 months old when they took her to IJN and was given an appointment for two months later.

"Within the two-month waiting period, complications arose and we had to take her to Gleneagles where she was warded in intensive care for three weeks. She needed heart surgery costing RM26,000," she said.

In both cases, the families appealed through NST for public donations.

This article was first published in www.nst.com.my on 25 March, 2008