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A couple’s journey

We had dressed up nicely for a day in town. After all, we had ultrasound scans done of the swiftly-growing fetus in my wife’s womb, and we were looking forward to celebrating the result of the detailed scan that day, which would reveal to us whether we were expecting a baby boy or a girl. My wife had spoken wistfully of having a little princess to doll up, and as for me, coming from a family of all boys, I was looking forward to a new experience. But no matter what gender our baby was, we were really looking forward to the arrival of our first-born child.

Our ultrasound analyst had been very quiet over the last few minutes. My wife and I had been chatting happily about how our baby looked on the monitor screens when we finally noticed that the analyst had been focused on the belly of our unborn child. “We have problems,” she finally said. “The baby has at least two problems. There may be more.” She pointed at the screen. “Here you can see a protrusion from the abdomen. It’s an omphalocele. That alone is a serious issue. But your child has a cleft palate as well. I’m sorry, but these are signs of larger issues facing your daughter.”

The rest of the afternoon went by in a blur. We faced the doctor on duty, and our gynaecologist came to check on us, but my abiding memory is that of leading my sobbing wife past a crowd of uncomprehending, staring faces in the Antenatal Diagnostic Centre.

The next couple of weeks were filled with questions. The endless rounds of check-ups, the amniocentesis procedure, and the interminable wait for the results of the tests took their toll on us. What had been a dream come true had turned into a nightmare. Finally, we were ushered into our gynaecologist, Dr Tan’s office, and were dealt a hammer blow of a diagnosis.

“It’s Wolf-Hirschhorn (W-H) Syndrome.” An extremely rare genetic disorder. It meant that our daughter was missing some genetic material in her chromosomes, and that it implied a full laundry list of birth defects, headed by profound mental retardation, frequent seizures, muscle weakness and ending with a drastically reduced life expectancy. The omphalocele and cleft palate, as it turned out, were only the tip of the iceberg.

Genetic counselling would come later, but we were faced with a decision to make that any parent would dread. Regardless of our decision, we were told that KKH would help in any way possible. For us, though, the thought of losing our baby was tearing us apart inside. To lose her now, so close to the mid-point of her gestation? Or have her slip away, as so many born with W-H Syndrome do, within one or two years of her birth?

We finally made up our minds to check into the hospital to induce her delivery.

We had good care and support during those terrible hours following the insertion of the pessary. Ultimately it was anticlimactic. Births are followed by an infant crying and parents laughing. Ours was silent, broken only by sobs.

I saw my little girl in the small side room next to the nurses’ station. She had been cleaned and was lying on her side on a pink cloth. As I gazed at her tiny, delicate features, I could almost imagine that she was sleeping and that I might wake her up if I made a sound. The extent of W-H syndrome on her appearance and body was clear, but there was a look of serenity on her countenance that was of small comfort. Early the next morning, I accompanied her on the final journey deep into the basements of the hospital.

I’m a carrier of what is termed a balanced translocation. Genetic testing confirms that I, not my wife, have this anomaly, and that each child I have will have only a fifty-percent chance of being normal. As you can imagine, this was yet another blow on top of losing our daughter. How we struggled to resume our regular family life following this experience I recall only faintly, but it was only with the help and support of our family, friends, and the staff at KKH that we managed to get back some normalcy into our lives. We turned to our religion for solace; we have to thank our friends from the religious association for helping us put these events into perspective. We were told that subsequent pregnancies would need to be carefully monitored; that my wife could expect to have to undergo unpleasant procedures such as chorionic villus sampling (CVS) as a rule in order to ensure that any abnormalities are detected earlier.

It is coming to three years now since the loss of our daughter. Time, and the good fortune of having not just one but two beautiful baby boys come into our lives have lessened the pain somewhat. But I do know that my wife and I will cherish and hold close to us the memory of our daughter; and that one day we will tell our sons about their sister that made their presence in this world possible.

Tang C.O, 3 March 2009