After I found out that my daughter has an extra chromosome I was crushed. Fear and lack of understanding about the condition made it worse. I was unsure about what kind of life and future my daughter Zia had laid ahead of her. When I was pregnant I had read a lot about baby’s developmental milestones so having to erase those expectations from my mind was very difficult but necessary as accepting that my daughter would develop at her own pace was the first step to embracing her condition. It took me a while to seek help because I thought no one would understand how I felt. Initially I thought only people over a certain age had babies with DS (down-syndrome) so I was very confused as to why it had happened to us. I was 23 and her dad was 30 when we had her. We were also very fit and healthy. I then started reading a lot about DS looking for answers. It was also at that point that I got the courage to seek help. I contacted the Down Syndrome Association and from that time they have been supportive. Here is some information that they gave me.
DS is a genetic condition caused by part or all of a third copy of chromosome 21. It is typically associated with growth delays and intellectual challenges. The extra chromosome occurs by random chance and so the parents are typically genetically normal though they may carry it in their blood. If the father’s blood contains it then there is a 12% chance that the condition will happen again in his other children. If the mother has it then that number trebles to 36% so it is important that these tests are done before planning to have more children so as to make an informed decision. We went for these tests and none of us have it and so while there is a chance that it may happen again, those chances are very small.
DS affects people on different levels, severe, mild or balanced. If it is balanced then it is present in your blood but does not affect you at all. Although there are higher chances of a little one being born with down syndrome the older their mom is, the condition is really very random. It happens in about one in every 1000 babies born each year. There is no prevention and no cure and while it is possible to find out if the baby you’re carrying has DS through prenatal screening followed by diagnostic testing, this is not standard prenatal testing procedure. There are also no symptoms that may prompt someone to get these tests done while they are pregnant. Most people find out after baby is born like we did.
After getting in touch with the DSA we were encouraged to join a support group of other parents who have special little ones like Zia. This has helped a lot as we get counselling and advice. I’m happy to say that I am no longer afraid nor uncertain about my daughter’s future because I know that with proper help she can live and enjoy a good life.