[tri-med] Re: [tri-family] having kids

----- Original Message -----
From: "gina L Anderson"
>> i asked him what planet he was from and he started to laugh and he told
me that there is some kids that do have families. i just can't see it
happening gina son taylor triosmy 8 mosaic 21 months old

Its definitely for real sweet. There are many of our mosaicers who have had
children.

There are two ways of looking at this and I am not sure which one you mean
so bear with me and I will try and answer it both ways without getting
technical or controversial.

Just because a person has a chromosomal anomaly doesn't mean that they can't
physically have children. Even those children with full trisomies are quite
capable of becoming pregnant. And very sadly it has happened. I say sadly
because it has happened as the result of abuse.

Some chromosomal anomalies, for example Turners Syndrome (monosomy X),
Trisomy 21 etc usually have high incidences of infertility. However it is
not an absolute fact and there have been cases where pregnancies have indeed
happened.

Why most families don't think about it is because they are thinking of the
developmental age of their children. But this attitude is changing, and
rather quickly.

When I was growing up it would have been unheard of for a person with any
sort of disability to live alone, let alone living with a partner or having
children. But these days its actually encouraged in many ways.

There are a lot of supported units where couples can live very ordinary
lives, keep house, work and have children if they wish.

I used to work for a private children's charity and one of their jobs was to
support individuals with disabilities who had children of their own. Tough
job for the workers sometimes!!

The general thought these days is that if a person can care for themselves
there is nothing to stop them caring for a child. They may need support, but
they, like the rest of us, are entitled to make their own decisions about
marriage and having children.

One of the concerns with children who have a trisomy is that they will pass
the condition on to their children. In the case of a person with "full"
trisomy this is absolute. Any child that they have would indeed have the
same trisomy. (the reality of course is that they would probably miscarry,
but technically they would still be able to fall pregnant)

With mosaicers its a bit more complex. It depends on how the gonads
(reproductive bits) are effected by the trisomy. With Taylor being a boy its
a little easier to tell. When he is older they will be able to take a sperm
sample and see if the sperm have a trisomy, don't have a trisomy or if there
is a mix - some sperm with and some without. They could test now - and you
could ask - but chances are that they wouldnt do the test. Firstly it would
be invasive. Secondly it has no bearing on Taylors current treatment (unless
he were to have radiation therapy, certain types of chemo etc). And finally
as my geneticist told me - its none of my business :-))) I asked re Alex (of
course) and as she told me that is not my business but Alex's and his
decision to make when he is older :-))) Given the current state of possible
discrimination with the insurance industry regarding genetic information I
now dont want to know!!!

A person with mosaicism will NOT have a child with a mosaic trisomy. Their
children will either have "full" trisomy or be completely "normal".
Percentages of risk will vary greatly depending on the person, but it would
be anywhere from 0 - 50% possibly 75% but unlikely to be that high.

There are a few cases in the literature pertaining to T-18 regarding this.
I remember being scared out of my wits when I first started researching T-18
to read of a particular case in NY. It came to the attention of the doctors
when one family had multiple pregnancies where all the babies had confirmed
full T-18. I think it was 3 or 4. When they tested the parents they found
that one was actually a very high functioning T-18 mosaicer. The parent
never had any idea that there was something wrong. They lived completely
independently, held a steady job etc. This level of high functioning
mosaicism is of course rare we think, but may be less rare than we realise.

More recently there was a case in the literature where a woman decided to
have children - she had T-18 mosaic. She actually had a healthy child by
using pre-implantation diagnosis. That is where the egg is fertilised
outside of the womb and the fertilised egg is tested at 3(??) days old to
make sure the chromosomes are OK and then implanted in the mothers uterus.
Preimplantation biopsy has been stopped in Australia for the time being -
but thats another story.

In the other case a few years ago, it was the father who had T-18 mosaic. In
that instance he had a healthy child, but they used a sperm donor from
memory. They are short articles and I did promise to type them out for
folk - but have never gotten around to it. If anyone wants the job let me
know.

I also helped a family where the mum had Monosomy X mosaic (Mosaic Turners
Syndrome) - she actually fell pregnant (easily) and had a child with full
Turners Syndrome. She has since had a healthy child.

So my sweet - when Taylor grows up it is very possible that he may want to
have children, and equally possible that it will happen!!! Never say
never............ its possible now but who knows what technology will be
around in 20 years??

He who never made a mistake never made a discovery.
-- Samuel Smiles

Keep Looking for Rainbows!!!
Karen, Mum to Alex (7, T-18 mosaic)
Sydney, Australia
http://members.optushome.com.au/karens
http://www.trisomyonline.org

                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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