Muhammad Zaihan, 2-years-old

“As parents, we spend so much time worrying about what’s best for our children. But we have to remember that giving them all our love and attention is the best gift of all.”

 

Our first daughter Sarah Alena was born premature at 36 weeks and had all the features of a chromosome disorder baby. She experienced many challenges to her health especially with her breathing and spent so much time in the Intensive Care Unit. It was two months before we could hold her in our arms. That was a difficult and challenging time for us especially since we were first-time parents. Sarah left us in 2015.

I am 35 years old and working as an engineer in oil and gas, and my wife is a fulltime housewife. When we got pregnant with our second child Zahira Aisyah, it was a confusing time for us.  We were so happy that she came at the right time when we were going through deep grief after losing Sarah. But we were also worried whether our ‘rainbow baby’ would be a normal child or a chromosome disorder baby as well.

 

Then in 2018, we had our first son Muhammad Zaihan who showed the same symptoms as our first daughter and child. It was like history was repeating itself all over again.

Once it was confirmed that Muhammad Zaihan was a chromosome disorder baby, we had to prepare ourselves mentally. But honestly, because we had experience from our first child, it was easier to accept and we were less afraid.

Our son has a chromosome anomaly called 10Q 26.3. So based on the tests we did, his organs are affected, and his heart requires total repair. Because of this, he has the blueish baby symptom, which makes him blue as he gets more and more active. This then makes him less energetic. He always sleeps a lot and we are always worried. His development progress is also very slow.

 

Although he is two-years-old now, his growth is only like a four or five-month-old. Because of this development delay, he didn’t gain any weight in the past one and a half years. His weight is around five to six kilograms.

I think the most important lesson we’ve learnt from all three of our beautiful children is that we need to treasure the time we have them, cherish the moments and do not worry so much about what is going to happen tomorrow.

As parents, we spend so much time worrying about what’s best for our children. But we have to remember that giving them all our love and attention is the best gift of all.