Lynn Bailey: Down Syndrome is a chromosomal abnormality. It happens at conception; there is no fault of anyone. It is where there is an extra chromosome on the 21st chromosome. One of the things to remember is that the child will have 46 chromosomes, that it would have had anyhow; it just has one additional chromosome. So the child is a combination of its parents, like it’s brothers and sisters, the fact that it has an extra chromosome is going to give it-the child a few additional features of somebody else with Down Syndrome but it doesn’t mean that that child is going to look like every other child with Down Syndrome, the child will look like his or her family.
Professor Martin Delatycki: So the children with Down Syndrome invariably have a number of features including certain facial features, and have intellectual disability as a result of the effects of having three copies of chromosome 21 on the developing brain. About half will have a problem with the heart and the way the heart develops; some will have under activity of the thyroid gland; occasionally there can be blockage in the bowels.
Lynn Bailey: When a child with Down Syndrome is born, the medical machine goes in to overdrive and they test for everything, as they should. But that does not mean that your life is going to be full of medical appointments, it is just for that initial period of checking everything that they should, that the heart, the hearing, the bowel, all those things, but once they are ticked off--It doesn’t mean your life is going to be living at the doctors.
Kati: My name is Kati, I have three kids and my eldest, Taylor, who is seven and a half, has Down Syndrome.
Dona: My name is Dona, I have-my husband and I have five children and Charlie, who has Down Syndrome, is our fourth child.
Lynn Bailey: When the family is in hospital with a new baby it can feel to them, often, that-like they have given birth to a diagnosis rather than to a baby so we make a big issue of the fact that they have had a baby and that baby should be celebrated, because a baby is born not a diagnosis.
Professor Martin Delatycki: After birth most children with Downs Syndrome can be treated in exactly the same way as any other child, they can breastfeed and they can be with their mother, children can go home with their parents, bond and settle in to the routine of the family. So finding out that your child has Down Syndrome can be quite shock for parents, especially if people haven’t learnt that during the pregnancy and had time to come to terms with it before the birth of their child and parents often find very helpful to come into contact with the local Down Syndrome Association who can provide enormous support and help, and they can find help from family, friends, from their local doctor, they might be referred for counselling if that is helpful for those individuals.
Lynn Bailey: Most people think that having a child with a disability is going-has ruined their life and their life plans but that’s-that’s not the case, that’s never the case. It might slightly take you to another path, but that’s actually a really good path. One of the difficulties of my job is trying to explain to families when they are in, often such a state of grief, that life won’t be like that forever, it is just a period of grief that unfortunately they have to go through and trying to explain to them all the wonders that this child, like any child, is going to bring to their life.
Dona: Early on I would have probably thought, “What if I can’t love this child?” Particularly when you think, “How can I get excited about a child who is not going to be able to do something as simple as tie their shoelaces, how can I get excited about that?”, but you know what, you do. You get excited now because they have been able to achieve something that, okay maybe your other kids achieved it a lot earlier, but they still get there and that is the important thing.
Kati: He can be a very loving little boy. He will be just running around the room doing his thing and he will just come over to you, give you a quick cuddle and he goes, “Mum.”, and then off he runs again. He just comes in for these, sort of a-a top-up if you like, of the affection and off he goes again, which is really nice to see him want that interaction. So, that sort of tops me up then and I think, “We can do this, we can keep going.”