A Journey Which Led To More Than Learning To Be A Parent

Becoming a parent and being a parent is a universal shared experience. Regardless of what all the parenting articles, books and classes tell you, the uncomfortable truth is each subsequent pregnancy and each child is a different experience altogether, eluding the one size fits all mentality.

When Ansam and Naura learned of their second pregnancy, they had already been raising a daughter together. During the course of the pregnancy and at birth of their son, Neil, not much contrasted with the first one. It was not until Neil was 5 months old, they learned how different things would actually be.

Whilst there are diagnostic tests that can help identify Down Syndrome during a pregnancy, Ansam and Naura having no concerns regarding the matter at that time, had no reason to opt for such a test. It is also common to diagnose a baby with down syndrome after birth based on the physical appearance, as features associated with the condition are evident. As Neil lacked such features, this was also not the case.

When Neil was 5-months old, a doctor who had a hunch recommended doing a blood test to confirm the presence of extra material from chromosome 21. However, the test was not one that could be done in Maldives, so a blood sample is taken and sent abroad to do the testing. The parents were told that it would take up to three weeks for the results to come out – beginning 3 long weeks of agony.

In these 3 weeks, Ansam & Naura began to learn about down syndrome as much as could and prep themselves for what the results could be. Yes, Neil had down syndrome. Despite all the preparations during the three weeks, it broke their hearts when they got the test results. There was a lot of crying as well. But that very same day, together they decided that it was the last day they would cry over this fact. And there, began acceptance that this is the reality.

Neil is 9-years old now. Although he shows cognitive delays just like most children with down syndrome, otherwise he is a healthy little boy. Ansam & Naura have over time adopted a very positive attitude when it comes to raising Neil whilst avoiding so much of focusing on the ‘down syndrome’ aspect. Altogether, they are a very happy family – living their best life.

One thing, however, they like the rest of the parents who have children with down syndrome ask for is more awareness within the society regarding the condition in addition to acceptance of individuals with down syndrome. The dream of an inclusive community.

To achieve this goal, Ansam has also founded an NGO, Beautiful Eyes, that works towards increasing awareness regarding down syndrome. Beautiful Eyes also supports parents with children who have down syndrome in addition to helping children get the therapies they require and advocate for their rights to education healthcare & employment etc.

In addition to this, what Ansam & Naura could ask as parents to a child with down syndrome is for the common availability of services that individuals with down syndrome require – which in the Maldives even now is a scarcity.