Ok all you mothers who have been researching like mad, tell me why every organ and system in the body is not always affected by the extra chromosome? If there is an extra chromosome in every cell, why don't all children with DS have the same health problems? Why are some areas of the body affected and not others? Why do some kids seem to have a lot of heath issues and others don't?????

because the individual cells don't control the organ once it's developed. (ok, this is a very very loose translation!) but they do control how the organ developed in the first place. Some of the organs will develop normally and some will not. Just like kids who have Fragile X syndrome. Not all their organs are affected. Or Cystic Fibrosis...not all the organs are affected, or Prader Willi, not all the organs are affected.

You know who could answer this brilliantly is Courtney. I think she is still in the hospital with her son, but maybe she'll chime in later.

This is the short answer: for the same reason our kids don't all look alike. There are 46 other chromosomes at work, too, and each brings with it a particular influence. I was also told once that the way in which the 47th chromosome is attached (how much extra genetic material there is, how it is incorporated) influences the development, which is why there are degrees of abilities in people with DS.

I don't know if this makes any sense. I am not explaining it very well. I think it's like snowflakes--they are all snow, but each is also completely individual and unique.

Uggg. I'm really struggling. Courtney??? Courtney???

The way it was explained to me was......your child has all of your genetic material.....moms and dads give kids their chromosomes. So the best example I can give is....my husband is 6ft 6 inches. Now yes, having that extra #21 for Daniel will mean his growth will be slower.....but his genetics tell a different story. Daniel will be predisposed to being taller...because that's what his daddys genes will tell his body to do. I assume it's the same with other things. The way the extra material effects each child is determined by what their genetics that's their moms and dads gave them. And how that is expressed is unique to each of our kids.

Maybe's our kids eyes slant a little....but I can see the color of my husbands eyes in Daniel. Maybe his hands have a crease....but I can see my hands in him. So even though our kids share some common traits....your own genetics shine through and the end results is as different in our kids with Ds as our typical ones.

I'm gonna PM Courtney, now that she's home, and see what her take on this is...I'm really curious...

The best explanation I heard on this was a theory. When a body grows or organs develop, they refer to the master plan witch is contained in the nucleus (chromosomes). The heart for example will look at the plan and see how to build heart cells. Because of the extra chromosome the builder gets confused because it expects to see only 2 of each witch in theory explains slower growth and development.

All I know is they're still a little of us and a little of them.Clara looks so much like Daddy that I'm jealous! The DS effects cell lines. Like skin and brain cells are in the same cell line, etc. The syndrome part is referring to how there are a cluster of features and health issues that may or may not be present. There are also people without DS who may have some of these features, like a random palmar crease or wide spaced eyes. Some of these features also appear in other genetic syndromes.

I don't know any more then this but would love to hear more of the why answered. Good question!