Diagnosis: Down syndrome

It’s an indescribably horrific experience. The feeling that you get while lying on the operating table and hearing something like: “Oh! He has an extra thumb!” moments after your precious little bundle has been born and before you’ve even seen him. All your most basic expectations are shattered.  The shock of a disability or abnormality, no matter how big or small, takes weeks to absorb and accept.

When you’re pregnant and even before that, you don’t expect to have a disabled child. You don’t plan for it and you don’t prepare for it. It is something that happens to other people.  As a second time mom, pregnant with twins, I had to deal with the reality of learning my youngest twin boy had Down syndrome. Since I was younger than 35 and pregnant with twins, there seemed to be no reason to do any additional tests while I was pregnant. Even directly after birth, there didn’t seem to be any indication that something was wrong.

However, once we were back in the ward, the nurses realised that something was wrong with Zaan.  As soon as he was taken from the incubator, he turned blue. The paediatrician had to be called back and Zaan was placed in ICU.  The next day the paediatrician came to see me with the news that he had requested several tests and a second opinion from a doctor specialising in genetic disorders. He suspected that Zaan had Down syndrome.

The very first thing that went through my mind was “No, it’s not possible. He must have made a mistake”. The next thing was thinking that it must be something less drastic than Down syndrome. To me the biggest challenge was to accept that my son would have a mental disability.

After having the Down syndrome confirmed, I didn’t want to talk to anyone. No sympathy or advice and I definitely did not want anyone to try and cheer me up. All I wanted was to be left alone with the knowledge that everything had changed. How could anyone understand my feelings in this situation?  It took me ages before I was able to talk about my son’s diagnosis.

One of the books that I read described finding out about a disability as grieving. And that is exactly what happens. You grieve for the perfect baby that you were expecting. The life that you had planned for your child. You even go through the same process as grieving. First there is shock and denial, then there is anger, bargaining, guilt, sadness and depression. Finally there is acceptance.

Added to these feelings, was the news of our baby’s health problems. We had to deal with the heart condition that required expert care and a big operation within the first six months of his life.

As a mother who preferred breastfeeding I felt like a complete failure because I was unable to.  I also felt guilty for not being able to express enough milk for all of his feeds. Looking at the little alien lying there connected to all those wires and tubes, I felt so distant from the perfect little baby I was eagerly awaiting.

Once he came home my feelings slowly changed until I was again in love with my little bundle of joy. The obstacles that he would face in his life became our obstacles. I started planning his future again. Oh, the joys when he reached a milestone! Getting to know his little personality taught me that he was an individual in his own right and not just a condition.

Do you have a Down syndrome child? Share your experience. Or bust your own beliefs about Down syndrome. Read about Down syndrome myths.
The Down Syndrome Association can be contacted on (021) 919 8533 or info@downwc.co.za

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