Our first son, Adam, was born in October 2007 and Ryan arrived 23 months later. Both were healthy pregnancies, natural deliveries at 40 weeks and the boys each weighed 3.5 kgs. Contractions started gradually at home and their due dates were missed by mere hours.

With our 3rd pregnancy, everything went smoothly as previously. We found out early on that we were expecting another boy and were very excited. Adam, being 4 years old at the time and obsessed with all things Space, named his unborn brother Pluto. The smallest planet for the smallest member of the family (in our house, Pluto is still a planet!).

I was 32 when I fell pregnant for the 3rd time and no red flags were raised. My 12 week blood test screening picked up no unusual markers, the baby's nuchal fold was within normal range and the 20 week anomaly scan showed that he was growing nicely. My amniotic fluid was a little on the low side, but this was being closely monitored.

My husband and I were at the 36 week check-up, when the pregnancy took an unexpected turn. My amniotic fluid was dangerously low and my gynae decided that as I was nearly full term, it was time. An erratic heartbeat had also been picked up and so I had a foetal stress test. It was discovered that the baby was not in any immediate danger, but a Caesarean sooner rather than later, was the safest birth option. It was booked for 2 days' time – 28 June 2012.

This was not the birth plan I had wanted or even expected. I had just assumed that my pregnancy would progress as in the past. But I was willing to do whatever was necessary to keep our little boy safe and out of harm's way. I trusted my gynae implicitly and I knew that she had my and the baby's best interests at heart. And despite the fact that he would be a bit premature, I believed that we had to stay positive and that everything would be ok.

Thursday morning arrived and Nicholas was born at 08h49. He seemed so tiny (2.44kgs) compared to his brothers, but let out a good scream, which was a huge relief. I remember feeling very lightheaded and dazed, but holding him and thinking how perfectly tiny he was. We were wheeled into the maternity ward and began phoning family about Nicholas's arrival. It all felt very surreal. After about half an hour, the paediatrician (who had been with us in theatre) came into the room and brought our world crashing down. She suspected that Nicholas had Down syndrome. We were in complete shock. When the paediatrician left us, my husband was holding him and as he opened his eyes, I knew. I had been so out of it earlier that I hadn't noticed anything, but I now saw the signs.

Thoughts started racing through my mind. I immediately imagined Nicholas being placed into a home and my heart broke. I couldn't let that happen. Then I remembered it was 2012 – so much had changed from how special needs children were treated 20 or 30 years ago. I wasn't unfamiliar with this genetic disorder. A very good family friend, 7 years older than me, has Down syndrome. So I knew a bit of what to expect. I felt reassured in my knowledge that Nicholas would one day walk, talk and experience most of the things that typical children do.

The next few hours were a blur. We told family and close friends the news. Blood tests were done and it would be 5 days before the results were confirmed. Nicholas was struggling to suck and was taken to the neonatal ICU. I would only see him a full 24 hours later, once on my feet again. When my milk came in, I tried desperately to express with a top of the range breast pump that my husband had hired. Unfortunately I was just too stressed and as much as I wanted to breastfeed Nicholas (as I had my other two), there was just too much to deal with.

When he was 2 days old, Nicholas was checked out by a paediatric cardiologist, who confirmed 2 small holes in his heart. Although we would receive the blood test results in a few days, this was further evidence that he had Down syndrome. Up to 60% of babies with Down syndrome are born with heart defects. Thankfully, it was not life threatening and the cardiologist would keep monitoring.

We received the blood test results and Nicholas was diagnosed with non-disjunction Down syndrome, the most common type (about 95% of babies born with Down syndrome). By then it wasn't such a shock. Yes we clung on to some hope that he didn't have that extra chromosome, but we had essentially accepted the news at birth. It was absolutely heart-breaking to come home without Nicholas. We just wanted him to be off the feeding tube and able to leave the hospital.

Three weeks after Nicholas was born, he came home and his brothers got to meet their little Pluto for the first time. It was a very emotional yet happy event. We had told them about Down syndrome and what it entailed, but they were 5 and 3 years old, so we kept the explanation relatively simple. It honestly made no difference to them. Right at that moment, he was like any other little newborn baby with exactly the same needs. The most important thing was that the 5 of us were finally under one roof.

Unfortunately, 12 days after arriving home, Nicholas contracted RSV (a very dangerous and potentially life-threatening respiratory virus) and was admitted back into the neonatal ICU. Only later did we find out, that as a result, he had experienced mild heart failure. It was discovered that his heart defect was a little more serious than initially thought and open-heart surgery was inevitable. When he eventually came home again, 2 weeks later, it was now imperative that we 'fattened him up' in order to prepare for the surgery.

Nicholas was a very easy baby and doing well. He struggled to pick up weight, but we knew this was essentially due to his heart condition. We were given the option of waiting until he was 6 months old before having the surgery. But at 4 months of age, the cardiologist was satisfied with his weight gain and we really didn't want to put it off any longer. It was hanging over us like a dark cloud and if we waited, we risked Nicholas spending his 1st Christmas in hospital.

5 November 2012 arrived and Nicholas had open-heart surgery. It was an extremely nerve-wracking time for us, but we knew he was in the best possible hands. We were regularly updated throughout the surgery and 6 hours later, we received the best possible news. Nicholas's surgery was a success and he was out of theatre.

Cardio-Thoracic ICU is a very scary place. Visiting hours (parents only) are extremely limited and you know that all the patients in there, of various ages, are dealing with life-threatening issues. It was traumatic to see him attached to all the wires and machines, but every day, there was an improvement. The nursing staff was phenomenal and Nicholas received one-on-one care while he was in there. A week later he came home and we couldn't have been more grateful.

The open-heart surgery really put everything into perspective for us. That extra chromosome was meaningless. We just wanted our little boy to be healthy, back at home and for us to be a family. We can't imagine our lives without Nicholas. We didn't know that he would be born with Down syndrome and I'm so thankful that we didn't. We were spared some terrifying choices. Nicholas was always meant to be a part of our lives and our lives are richer for it.

My intention is not to dictate the path of others nor judge, but rather to create awareness for Down syndrome and to instil hope. I want to inform society and especially expectant parents, that these children can live to be happy, healthy and independent adults. They will most certainly make a positive difference in the lives of those who have the privilege of knowing them.