Before Hui-Yin was born, my husband and I had no inkling at all of what was to come. The gynecologist only mentioned that she would be a small baby. The delivery did not take very long, unlike my previous two children. Immediately after the delivery, the gynecologist told me that baby had some problems with her mouth and hand. Within an hour, the pediatrician came to me and said that he believes she has a condition called trisomy 13. He said trisomy babies generally do not live long. I can still remember his words that this baby may have “3 days, 3 weeks, 3 months”- he didn’t know. He did say his preliminary diagnosis was subject to a blood test.

We were shocked. For the next few days we could only cry and grieve. We did not know whether she would live or die. And then, the blood test results came back. It was negative. She did not have trisomy 13. We were referred to a geneticist. He ordered another blood test. It came back negative too. He then diagnosed her condition as Ectrodactyly-Ectodermal Dysplasia-Clefting Syndrome or EEC Syndrome. As the long term prognosis for this syndrome was good, he advised us to proceed with her care and to repair her birth defects. Her immediate problems were a hole in the heart and a cleft lip and palate. She also has a shortened right hand that is missing 3 fingers.

The geneticist was very kind. During the appointment she was having a fever. As there was a bed available, the doctor immediately admitted her. After 3 weeks in the general ward, I was exhausted taking care of her. One night she vomited and did not stop crying. The doctor decided to transfer her to the intensive care unit. My heart sank.

In the ICU because of her heart condition, she was placed on a bi-pap machine to help her breathe. The doctor told me that this particular hospital was the only hospital in the Klang Valley or maybe West Malaysia to use that kind of machine on children (at that time). During Hui-Yin’s stay in the ICU for 1 month, surprisingly she had no infection, no vomiting and no fever. She increased in weight and was ready for the heart operation in a shorter time than if I had her at home. At every turn, when I thought things were getting worse, instead it turned out for the better. She had a successful heart operation after that.

In the early hours of 31 August, I watched the fireworks going off at Taman Jaya from the hospital window. It was truly merdeka for me. Hui-Yin was discharged from hospital that day.

At home, I still needed to feed her by tube every 3 hours. The plastic surgeon said I had to get her used to feeding with a bottle. It would help in her food intake and speech later on. I experimented with all types of bottles bought from the pharmacy. Finally through the Cleft Lip and Palate Association of Malaysia, I was able to obtain a softplas bottle. She could suck when I squeezed the bottle and I could see how much she was drinking. It was still hard work as she could only take in 1 ounce of milk each feeding.