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May 15, 2023 12 mins

Hiding Important Genetic Information From Your Children

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Speaker 1 (00:00):
Robin Terrrily kip on brisbanees Kiss ninety seven three.

Speaker 2 (00:05):
Robin tarykips full disclosure, no.

Speaker 3 (00:09):
Exposure, forgive me father for ab sin.

Speaker 4 (00:13):
Yea, it's a big one this morning. You can go
to our website and tell us your story just Kiss
ninety seven three dot com dot au. We promise that
you won't be identified now when we really.

Speaker 1 (00:21):
Want to hear Brisbane's secrets because it makes us all
think and we have to check our own moral compass,
and no more than with this one.

Speaker 2 (00:29):
My partner and I were told that genetically we should
never have children because we're such a bad match genetic wise,
like it will cause big issues around fertility for us.
Doctors told us that there would be a seventy percent
chance that they would have major health issues like down
syndrome or heart defects or whatnot faster than twenty years.
We ignored that advice from the doctors and we had

(00:53):
two gorgeous children, but they both do have severe health issues,
my daughter being a lot more off now she's in
that wanting to have her own kids, but there's one
hundred percent chance she will face the same issues that
we did, So do we tell her or is it
too late? We don't really know what to do.

Speaker 4 (01:15):
Thirteen one oh six five's our number?

Speaker 1 (01:17):
That is so full on, isn't it?

Speaker 2 (01:20):
Me?

Speaker 1 (01:20):
Just think about it. You've kept this secret from your
kids about their medical history. You've now got a situation
where you're actually looking at the people you love the
most in the whole world, and you know something about
them that has not only caused them pain, but he's
going to potentially have generational impact.

Speaker 4 (01:38):
Yep, what do you reckon? I think you've got to
tell them now. I think you can't wait another day,
you know what I mean, Like it's going to affect.

Speaker 1 (01:46):
Them any minute.

Speaker 4 (01:48):
Excuse me, it's going to affect them any minute. Like,
you've got to tell them now, because the longer you
keep it, I mean, the more they know, you.

Speaker 5 (01:53):
Know, what do they say?

Speaker 4 (01:54):
Information is powered, so they if they know things, they
know what they're going to expect, and they're trying for
a kid themselves. They know you might have facility issues
and this is why.

Speaker 1 (02:05):
Okay, but you've also lied to them for twenty years,
like the I mean, and I agree.

Speaker 5 (02:09):
I think you have to.

Speaker 1 (02:10):
Well, I mean, for me and the way that I
sit on parenting, and I've had to live with this
for a really long time since my kids' dad's suicide.
Is that I have always gone on the front foot
because there was information and things that you know, you'd
think you shouldn't tell a nine year old that, or
you shouldn't tell a twelve year old that. But I
went and saw a counselor and he said, be age appropriate,

(02:32):
but be honest. So in all of my dealings with
my kids, even with the things that were so detrimental
to me and that would have changed their opinions about me,
I told them because I think they should know. But
this is even worse because this impacts them medically, right
like mine's moral stuff, like mind stuff about how you

(02:55):
will see the world and the people around you. This
actually has consequences to how they live their lives moving forward. Yes,
that's full one. That is a secret.

Speaker 4 (03:05):
And yeah, like I said, it would have been great
to tell them years and years ago, but every every
day is another day. They should have told them.

Speaker 1 (03:13):
I know, what do you reckon?

Speaker 5 (03:16):
There's a pivotal moment here. There's two things.

Speaker 6 (03:18):
One is that the child themselves has become the adult
actually has knowledge.

Speaker 5 (03:22):
Actually has note how you've struggled through her life.

Speaker 6 (03:25):
And so the parent talking that child can say, i'm
telling you at this time because we both know how
tough it's been for you at times. And he can say,
when you're loving your child, you don't want to see
them suffer the way I've seen you suffer across the years.
So he's got the chance to say, if you want
to go forward this way, you won't want to.

Speaker 1 (03:41):
You know, I'm telling you how you're saying, I've made
a big mistake, So don't make the mistake I've made.

Speaker 6 (03:46):
It's hard to say I've made a big mistake without
saying you're a mistake.

Speaker 5 (03:50):
Yeah, but you've got to say, I don't know.

Speaker 1 (03:53):
The mistake is in not telling. The mistake is not
in the child.

Speaker 5 (03:56):
Yeah, no, no, no, no.

Speaker 1 (03:57):
At no point. Okay thirteen one o SI. So this
is such a big moral issue, Louise of ol Jester,
what do you reckon?

Speaker 3 (04:05):
Oh, good morning crew. Yeah. Look, I've been listening to
your comments and feedback on this, and look I come
from a bit of a different angle with this because
I don't see it as a lie, because really, you
made those parents made a decision to have children. Yes,
it was a big risk, but they wanted to have them.
They had them. Yes, they had their struggles and difficulties,

(04:29):
but they loved them through it. And really, if they
told them at an earlier age, would those children have
been able to comprehend properly the parent's decision for this.
So they're at a stage now and an age now
where they could receive that information in a better line.

Speaker 1 (04:53):
And you're also taking the positive, which I also like,
like you're saying, hey, we've had this amazing life, We've
loved our kids. Kids have had a you know, they
have been oblivious to the fact that there is a
reason for their stuff. I mean, I guess if you
see the cup half full as opposed to half ample.

Speaker 6 (05:08):
All the half side is the difficulties they've had, raising
a job with whatever the medical condition is.

Speaker 5 (05:13):
Yes, so the whole family, And then.

Speaker 3 (05:16):
You could just you know, obviously they could sit down
and talk to them about it and say, look, I
know that you want to embark on on being parents,
which I think is wonderful. We need to let you
know that obviously you've had your own struggles and genetically
that could come through as it did with us, that
we still chose to have you because we wanted to
have children.

Speaker 4 (05:38):
Louise seems like a good mum.

Speaker 1 (05:39):
Yeah, and you seem really like level headed and practical.

Speaker 5 (05:42):
Yes, have you been all our lives?

Speaker 4 (05:44):
Thirteen one, six, five is our number if you want
to get involved.

Speaker 5 (05:47):
Full disclosure, no.

Speaker 7 (05:49):
Exposure, forgive me father for ray, since I.

Speaker 4 (05:52):
Should say five words ten ground it's just after the
news at seven thirty. But right now we're doing full disclosure,
no exposure.

Speaker 1 (05:58):
This isn't really big more quandary because it's happened to
a family where they were warned before having children that
their DNA meant that their kids would have medical problems.
Chance I think it was.

Speaker 2 (06:09):
Yeah.

Speaker 1 (06:09):
So now those children twenty years later do have medical problems,
and one of them, the daughter, wants to have her
own children, and they want to know should they tell
them because they never have up until this point. Rachel
of wood End, what do you reckon?

Speaker 8 (06:23):
Look? I this comes almost from a personal experience. I
feel that you do definitely need to tell the children.
So in my case, my father died of a disease CJD,
which at the time we were told was sporadic, but
those are high familial so my kids are now getting
to an age where I have the option to be

(06:46):
genetically tested to see if I carry that Jean. I
can't change things for my own children, but I have
said to them their entire lives that before they get
to an age where they will consider having children, I'll
get genetically tested, so they have that option that if
I'm positive, they can have the testing done themselves, and

(07:08):
if they're positive, they can also then have genetic testing
done when they choose to have children, because they can
then stop that familial trait being passed through the generations
and then basically choose the embryos that they choose to keep.

Speaker 1 (07:29):
Because testing has got so much better. Yeah, it has gotten.

Speaker 8 (07:32):
So much better. So I think it starts with me.

Speaker 7 (07:36):
If I'm clear, my children are clear, it's a fifty
to fifty with each of my children. Then if I'm positive,
so they have an option to kill off a familial
gene that could go through.

Speaker 8 (07:50):
I didn't get that chance. Now. My first child was
born when my father died. My next two were not.
Had we known there was a chance, I could have
had the testing done men and at least known two
of my three children would definitely be unclear not.

Speaker 5 (08:06):
Okay, they're fine. Clear.

Speaker 1 (08:09):
The other thing I thought about, too, is life insurance.
If you actually get tested and you know, oh yeah,
you probably wouldn't be life insurable. Well another no, no no,
But seriously, to think about that in terms of the
whole mix of if you don't tell them you don't know.

Speaker 5 (08:23):
Well, I'm not saying get your life insurance and get tested.
I'm not saying that, but that would be a fortunate circumstances.

Speaker 4 (08:29):
Well, Patrick out of Westlake can definitely relate to this.
We'll get his story right after this from Pink thirteen.
One oh six five is our number. Ifever you want
to be part of the show.

Speaker 5 (08:37):
It's our story this morning.

Speaker 4 (08:39):
And by the way, if you ever want to tell
us your story, you can do it from the Kiss
ninety seven three website. We promise that you won't be identified.
We'll even put your voice through a scrambler. But here's
a bit of today's story.

Speaker 2 (08:50):
And I was told that genetically we should never have
children because we're such a bad match genetic wise. Fast
than twenty years had two gorgeous children, but they both
do have severe health issues, and my daughter being a
lot more worse off. Now she's in that loan thing
to have her own kids. So do we tell her
or is it too late? We don't really know what

(09:13):
to do.

Speaker 1 (09:14):
Part of me is really warmed by the fact that
no one said I wouldn't end up staying with the partner,
Like if you got told that, you go, well, genetically
we're not meant to be together, because that would be
an option. And then the second option is that no
one's saying.

Speaker 5 (09:26):
Well, we wouldn't have children.

Speaker 1 (09:28):
No, you know what I mean, Like you'd roll the dice,
I think and just hope that maybe everything would be okay.

Speaker 2 (09:34):
Yep.

Speaker 4 (09:34):
Well, Patrick out of Westlake has a story for us.
Now you've been in a similar situation.

Speaker 9 (09:39):
Patrick, Yes, yes, we've a specially needed child, high needs,
no airnings.

Speaker 1 (09:47):
So what happened were you tell me?

Speaker 8 (09:50):
Yeah?

Speaker 9 (09:50):
So what actually happened was we went through fourteen years
of genetic testing to eventually find a solution. I suppose
a diagnosis, and it's just a diagnosis. It doesn't find
the child. It just puts a tag on the challenges
their place. But probably we were a bit older than
we had kids, and there's a timeline between having kids

(10:12):
and not having kids. And throughout the genetic testing they said, look,
hold off for a minute, but they never said, don't
do this, and during that time they said we eventually,
after in a variety of meetings over many years, we said, look,
we'd lot more than one child, and we'd always want
at least two kids. So what actually happened was we

(10:34):
actually were told there was a twenty five percent chance,
and every year we'd go in and we'd do some
more testing. Because testing back then, the initial testing we've
done to find out the diagnosis when we started with
two hundred and fifty thousand dollars, who got to by
the time we got to fourteen years later, it was
five hundred bucks. So obviously no one pays two hundred

(10:59):
and fifty grand to find a diagnosis, but the five
hundred dollars is much more for the got along the way.

Speaker 1 (11:05):
And what would you advise end up having?

Speaker 9 (11:07):
Look, we ended up having at our second child, who
is a boy, and it's genetically in girls predominantly. And
we walked in and we told that geneticis said, that's brilliant,
and we went what we expected you to say, you
shouldn't have done this, you know, because we actually laid
the odds down when if we had another specially aged child,

(11:28):
is that an issue? And she's a great kid, lots
of medical issues, great kid, but at the end of
the day, went she's a great kid. Having a great kid,
that's what it's about.

Speaker 1 (11:38):
Look at you go and did your children know then
about all of this? Have you kind of informed them?

Speaker 9 (11:44):
Yeah, we speak openly about it because I think the
oldness is part. But I can understand not talking about
it wanted. They're mature enough to digest that pace.

Speaker 6 (11:54):
Right, But you're considering I'm just going to say, under
the cost and a hardshift that that brings on on
the other sort of just raising child with special needs.
Would you advise your son differently when he comes time
to have kids.

Speaker 9 (12:06):
No, Look, it's going to be his decision. We just
we make sure that he's a mature adult as he
goes true love and everyone's going to make some different decisions.
And that's okay. It's very hard to judge someone because
they would have actually sat down and they didn't just
blindly go let's go do this quickly. They actually obviously
discussed it and there was a fair with a discussion
in the background. Yeah, and there will be a fair

(12:29):
with the discussion in the background to actually how they
actually talk to the kids about it.

Speaker 1 (12:34):
Fair enough, Thank you so much.

Speaker 4 (12:36):
Great story.

Speaker 5 (12:37):
Yeah, I hope his kids inherit his accents. Fantastical Evan
on Bristo's cheese nut, his imagery
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