Fit for Life
At the tender age of 21, this young lady with Down syndrome has gone through eight major operations for congenital heart disease and other problems.
The health pages will appear three times a week in the main paper now. We start with a Down syndrome woman’s journey.
Your baby will probably not be normal.
These ominous words struck like a hammer at Rohana 21 years ago when she went for her prenatal checkup, just two weeks before she was due for birth.
“Can you imagine how I felt? There was nowhere to turn to. I couldn’t even share it with others as I felt malu,” said Rohana, 55.
When Nabila Abdul Raes was born, doctors confirmed that she had Down syndrome as well as an imperforate anus (see Anatomy of an imperforate anus).
Baby Nabila had to go under the knife when she was just two days old as part of the procedure to correct her imperforate anus.
Then further bad news hit – when Nabila was three weeks old, doctors diagnosed her with atrioventricular septal defect.
An atrioventricular septal defect affects the heart valves between the heart’s upper and lower chambers, as well as the walls between the chambers.
Congenital heart disease and gastrointestinal problems are, unfortunately, more common in babies with Down syndrome, as well as a host of other difficulties.
It is estimated that about half of all affected Down syndrome children are born with a heart defect.
Digestive abnormalities, such as a blockage of the intestine, also occur, but are less common than heart problems.
For Nabila, she would eventually have eight operations altogether – for the heart, for correcting the imperforate anus, cardiac catherisations and operations for her hip.
Today, Nabila is a healthy, shy 21yearold young lady with a beautiful smile.
She was with her mother and father, Abdul Raes, 63, at Institut Jantung Negara (IJN), taking part in an awareness event on congenital heart disease at the centre’s Paediatric & Congenital Heart Centre.
“Her last major heart operation took place in 2010. Now, she just needs regular followup once every two years at IJN to ensure that everything is okay,” Rohana said.
On the day she received the news that not all was well with her unborn child, Rohana and Abdul Raes were understandably in despair.
“But through the despair, I kept praying that everything would turn out well,” remembered Rohana.
“For a mother, when a doctor diagnoses that something ‘bad’ is going to happen, you must have faith and remind yourself that there must be a reason why God has given us this test.
“I take this as proof that God loves me. Yes, there are times when I get very down, but I recover, I move on.
“After what happened, I resolved to do my part to help other parents in similar situations. My aim now is to help spread awareness about congenital heart disease.”
For Rohana and Abdul Raes, the support community has been a source of strength.
“Years ago, one of my friends helped me with an event at Wisma MCA. She helped arrange for a ‘Save adik Nabila’ day, and we raised RM68,000 from generous donors to help with surgical fees,” she said.
It’s one of the reasons Rohana emphasises the importance of support groups.
This is not the first time the family has faced adversity. Rohana and Abdul Raes had another daughter with congenital heart disease 27 years ago. The baby died at seven months of age. They also had a son who was stillborn.
Today, Rohana and Abdul Raes are grateful that all their other children, six of them, including Nabila, are well.
“These days, Nabila is gaining quite a bit of weight because of all the good food we give her. We’ll have to start controlling her weight,” she grinned.