MOSAIC MOMENTS

Throughout the years, I have met many adults who have mosaic Down syndrome. In a lot of these instances, the adult was told all their life that they had Trisomy 21 Down syndrome. However, as they grew and began to make friendships, they realized that something was different from them compared to their peers with Down syndrome.

Perhaps they didn’t have the stronger physical characteristics associated with Down syndrome. Or, maybe they didn’t have the speech impairment that so many with Down syndrome have. In some instances, they went to school without the need of extra help in their courses.

And, so, throughout their lives they stayed in this state of confusion, because although their parents told them that they had Down syndrome, and they formed relationships with other people who had Down syndrome, the person with mosaic Down syndrome thought “something isn’t right” in the back of their mind.

As they grew into adults, they discovered (through a karyotype or from their relatives) that they actually had mosaic Down syndrome instead.

In almost every instance of this happening, the person with mosaic Down syndrome felt remorse towards the parents because they felt as though the parent withheld vital information from them. In at least one instance, the person lost trust and refused to talk openly with his parents again.

Like my Cookie scenario, I think it is important to know exactly what the diagnosis is and to let your child know exactly what they have. Because, as your child grows and becomes an adult, this information will be important to him or her. And, when they are asked about Family Medical History, they will be confident that they are providing accurate information.

It is true, we don’t know as much about mosaic Down syndrome as we do about Down syndrome, however we are working on that to get more research done so we can discover all the ins and outs of what this truly means.

What we do know is:

1. It happens differently than Down syndrome. 

2. There is often a specific speech problem in MDS compared to Ds

3. Depending on where the affected cells are located will determine the delays and health conditions present.

4. Depending on where the affected cells are located in the reproductive system will increase the chance of passing Down syndrome to the offspring.

5. The physical characteristics are not usually as prominent in a person with mosaic Down syndrome.

Tomorrow, I am going to change up my format just a little. As parents of children with mosaic Down syndrome and Down syndrome we are, FIRST, parents! So, beginning tomorrow, I will talk about parenting in general and from now on, each weekend I will discuss parenting issues and hopefully pass on some tips I have learned over these past 26 years of being a mom!

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