[tri-med] GINA~ tri children and reporduction

Gina~ this post may help with your trier reproduction quest for information,
it's one Karen did a while back.

Michelle mom to Alex (16,partial trisomy 14 mosaic) and Molly (12)
MichiganUSA

>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  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.

>Reproduction for our children is possible now but who knows what technology
will be
> around in 20 years??



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

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