Learning About Raeyan’s Down Syndrome
After bringing Raeyan home, we began following up with him at PPUM. We attended his genetic and developmental appointments and slowly learned more about what Down syndrome meant for our little boy.
The genetic doctor explained everything to us in detail. We learned that Raeyan had Trisomy 21, the most common form of Down syndrome.There was so much information for us to take in as new parents. We were learning about his condition while, at the same time, simply learning how to be parents to our precious little boy.
We also applied for his OKU (Orang Kurang Upaya) card, so that he could receive the appropriate support and assistance available to him.His hospital appointments were usually scheduled about every three or four months. In between those appointments, we were actively involved in his developmental therapies.
We attended his physiotherapy and occupational therapy sessions and did our best to support his development at home too. At that stage, our focus was simply on giving Raeyan the best support we could. We were learning, adapting and taking one step at a time. Little did we know that another important part of Raeyan’s medical journey was waiting for us, the journey that would eventually lead us to his heart surgery.
Growing, Reaching Milestones, and Becoming More Unwell
Despite everything we had learned about Down syndrome, Raeyan continued to surprise us. He achieved many of his developmental milestones, and we celebrated every little achievement along the way. Every new skill felt like a victory for us as parents. By the time Raeyan reached 1 year and 5 months, we had already experienced so many precious moments with him.
But around this time, we began to notice that he was frequently having secretion and respiratory-related problems. There were times when he became unwell enough that we had to take him to the hospital, and he was admitted for treatment and observation. These repeated hospital visits became worrying for us. We were gradually beginning to understand that some of the difficulties Raeyan was experiencing could be related to his heart condition, particularly his Atrial Septal Defect (ASD).
At that point, the heart condition that had once been mentioned to us at birth was becoming a much more significant part of our lives. We had hoped that the hole in his heart might close on its own as he grew. But as Raeyan grew older, we began to realize that our journey with his heart was not over.
When I Knew Something Wasn’t Right
Our appointments with the cardiologist became more frequent. At first, the doctors told us that the hole in Raeyan’s heart was about 3 mm. We were given hope that it might close by itself as he grew older. Later, during another appointment, we were told that it was about 5 mm. I had so many questions.
Whenever I met the doctors, I would ask questions again and again because I wanted to understand what was happening to my little boy. But every time we returned home, I was left with so much stress and worry. I couldn’t sleep at night. When Raeyan was sleeping, I would lie awake watching him. I started reading and learning more about Down syndrome. The more I learned, the more I began to feel that something wasn’t quite right with Raeyan. He struggled with his breathing at times, and I could see that he was having a difficult time. I kept asking myself, “Will the doctors think I’m exaggerating?”
But then I told myself, No. I am his mother. If I feel that something isn’t right, I need to find out. I decided that I wanted Raeyan to be seen by a cardiology specialist. So, we brought him to the emergency department again. He was admitted to the hospital, and this time, we finally got the opportunity to meet the specialist, the very person I had been hoping to see.
Then came the news that I could hardly believe. When we asked about his heart, we were told that the report showed the hole was approximately 10 mm. I was stunned. We had first been told 3 mm. Then 5 mm. And now, 10 mm. I couldn’t imagine what his little heart must have been going through. Looking at my tiny boy, I couldn’t imagine how such a small heart could be carrying such a big problem.
That was the moment I realized this was becoming much more serious than we had ever imagined.
