♪[intro music]♪
♪[music]♪
Jeanine Bezencon is about to have her third baby.
Jeanine and husband Chris
know the sex of the baby,
it's a boy.
They've named him Dylan.
They also know their son has Down's Syndrome
and a congenital heart defect.
It's an emergency Caesarean.
They're tears of fear.
She does not want to lose this baby.
-It's all hitting me now.
It's all hitting home.
Yeh, I'm just scared that...
he's not going to make it.
Really. I'm sure he will,
but there's always a fear.
The North Shore couple
had always wanted a third child.
From the moment they knew Jeanine
was pregnant, they saw themselves
as a tight family of five.
We have the day. Eight weeks to go.
Baby Dylan will be here.
But Jeanine's first scan,
thirteen weeks into her pregnancy,
indicated something was wrong
with baby Dylan.
These images were used to measure
the nuchal fold at the back
of the baby's neck.
It's known that this will be
abnormally thick in
a child who has Down's Syndrome.
Time came to tell me
and my husband
something is majorly wrong
with your baby.
And..the..the..earth
may as well have opened up
sunk me in because it was bad.
He says to me
"Your baby looks like it's got Trisomy 13
or 18 which is not compatible with life.
And 50% chance Down Syndrome.
Then he went on to say
"I... I hope for your sake that
the baby aborts itself in the next two weeks
so you don't have to make any decisions.
I was numb, you know,
numb as anything.
and for probably five minutes,
I didn't cry
and then the tears just came out,
and it's like, reality has hit,
it's real.
A second test two weeks later
confirmed this baby has Down's Syndrome.
Jeanine was told she
could terminate the pregnancy.
You know, you're getting told these other things,
these options and stuff...
and it's like... well it's not an option
you know, you've got a living baby inside you
As far as I'm concerned, that's that.
Well Dylan, this is going to be your...
your room.
And as you can see,
this is what it looks like before.
This is when Brandon had your room.
Got some cool stuff up on the walls
Astronaut stuff and a couple of Hot Rod cars,
I'll teach you all about building
cars and engines and stuff like that.
I'll take you downstairs and show you
the man cave,
show you how to use the tools.
Chris says to me "To me, it's not an option."
He said, but I support YOU 110%.
Whatever decision you make
I'm with you.
How's that [Paige]? Good job!
Jeanine was twenty weeks pregnant
when she invited us to be part
of her journey.
Oh excuse me, I'm just having
another contraction.
-[interviewer] Ohhh
[interviewer] You alright?
[Jeanine] Braxton Hicks
Oh... Have a feel of that.
The family understands that Dylan
will have both physical
and intellectual disabilities.
Yet they're not daunted by
the potential challenges.
I think it's one of those situations
that either defines us as a family
or it can break us, it's our choice,
and it's our choice to take it in a positive light,
it is a positive thing.
[interviewer] It is.
We're having a new boy, I mean,
what more could we ask for.
I'm a bit anxious about the whole thing
I'm excited! Because it's my little baby
coming out, it's all exciting as well
but you know, it is..
I've got that nervous...
in the back of my head,
there's definitely the...
the not knowing. I just don't know
what to expect in this situation.
I hope he's going to be ok.
That's my biggest..
OUR biggest concern.
But you were telling me the other day
that you had a little bit
of a freak out.
I just met a friend of mine
that's got a Down's Syndrome child
and they went through a lot
of very sad times with this little baby
and they just said, you know,
things are going to be tough for you.
It is going to be really
tough at the beginning
and that, but he said "now look... look now though"
you know, but... that really kind of
hit home to me.
[tattoo machine sound]
Chris works as a tattooist.
It's long hours, often working till
9pm at night.
He realizes a lot of the care of the new baby
will fall on Jeanine's shoulders.
I know that Jeanine, by nature,
she's the type of person, that emotionally,
she'll look like she's folding when a big
problem's presented to her,
but then she overcomes it so quickly.
She goes through...she tends to go
through it more emotionally than I
but she comes out twice
as strong as I do, you know.
So it's just her own journey,
and initially I kind of freaked out a little bit
that she's so upset, but then,
I always remind myself, you know what,
at the end of the day Chris,
she's going to come out twice as strong as me.
And she'll come out much smarter
and she just... she evolves to the situation
so that's good.
Come and get the scan done.
A further scan brings fresh concern,
Dylan has a hole in his heart.
It's common. 40% of babies with
Down's Syndrome
have a heart condition.
But they don't know
the extent of the problem.
[nurse] Do you know what you're having?
[Jeanine] A boy.
[nurse] So I can say "he?"
[Jeanine] You can - it's Dylan--
[nurse] Without revealing...
[Jeanine] baby Dylan.
They're in expert hands.
Doctor Emma Parry is Head of the
Foetal Medical Unit at Auckland Hospital.
So what I'm going to do now,
is I'm just going to focus on those measurements
to start with, alright?
We've got the baby's head there
we'll get rid of the [inaudible]
Ok... oohh wobbling around!
Come on now, behave.
Dylan obliges, moving into a position
where Dr. Parry can see his heart
and the scale of the hole.
So the thing I can see here,
is that there's one valve there, ok so,
that's...that's going--
[Jeanine] I'm sorry.
That's alright, that's alright.
That's going from the left atrium
through to the left ventricle and
the other valve here from the right
atrium through to the right ventricle.
And where these valves come across here
they're all in, kind of one line
and that's a little clue,
that tells me, in this view
that there is an AV canal defect.
But can you see this black hole here?
And you can see the--
[Jeanine] Oh..that's the..hole in the heart.
Yes. Ok. So we can see
that quite nicely there.
Ahh....
Is it quite a big hole in the heart?
[Dr Parry] Yes, they usually are with these, yes.
[Dr Parry] I'm not going to answer any much more
about that because,
to be honest with you,
I'm not the expert in interpreting what
happens afterwards.
Dylan will need an operation to
repair his heart.
But there's good news from the Cardiologist too.
Basically the chambers of the heart
are the normal size.
Sometimes babies with this problem
can have one chamber that's small
and that can be problematic,
your baby doesn't.
The way out of the heart to the body
into the lungs is normal size so
you know, everything is pretty much standard
from that perspective.
There's a tiny little bit of leakage
in one of the heart valves,
but it's really minor.
And that's nothing more than what we
usually see, so it's nothing
to be fussed about.
So I'm going to try and have a look
at baby's movements, check it's swallowing
and doing all the right things.
After the daunting information,
it's a relief to see a 4D scan
of Dylan thriving.
When you're in a situation where, you know,
you're worrying about a baby and stuff,
then this can be really helpful
for bonding.
[Jeanine laughing]
[Dr Parry] Now, don't laugh, don't laugh
because I need you to
keep nice and still alright?
[Jeanine] Oh my goodness!
[Chris] That's fantastic,
that's the probably
best shot we've had yet.
Awww...he looks like...
[Chris] That's cool... That's a lovely shot.
[Dr Parry] He does look really cute
Who does he look like?
[Jeanine] Chris.
[Dr Parry] Is he going to have more hair than you?
[Jeanine laughing]
We all live in hope!
[Dr Parry] His little hand coming up here.
[Jeanine] Oh!!
Woah - that is amazing.
Yeh, he just looks very happy in there.
Just looks like he's, just cruising along --
[Jeanine] All snuggled up.
[Chris] just resting in there.
He looks very content.
What's that picture of there [Paigey]?
[Paige] Umm... Dylan.
- [Chris] Is that his face?
- [Paige] Yeah
- [Chris] Is that his nose?
- [Paige] Yeah
[Jeanine] Do you know where his eyes are?
Good boy, that's perfect.
And Dylan's got a problem with his heart, alright?
And he's going to have an operation.
And what's wrong with the heart?
[Brandon] Umm.. it's got a hole in it.
[Chris] Good boy, good boy, that's right.
And it turns out it's the most common type
of heart problem that Down's kids have.
But the cardiologist said to me today,
that they stop the heart
and I was just "what?", you know,
it's all a bit scary to me.
I have total faith in the surgeons
so that's not a problem, but still
as a mum, it's really scary.
[schoolbell rings]
Hi Chris, I'm Hayley, nice to meet you.
Jeanine is trying to learn as much
as she can. There are two kids at Brandon's
school who has Down's Syndrome.
Jeanine has sought out the mums
for support and advice.
[general chatter and laughter]
These other two mums had no idea
their unborn babies had Down's Syndrome.
To actually give birth to a baby
and then to find out,
that must have just been..
[Tanya] A shock.
Yes. How did you react?
Shocked. Shocked. Didn't want to know about it.
Didn't handle it, basically, to start with.
And then I didn't want to see him
had nothing to do with him and yeah,
took me.. it was my husband
was the one that sort of brought me
around to it. But, as I said to you,
it took me a few days.
to even say "hello"
and meet my new baby.
And I would say it took me a good year...
Ok.
...personally.
Yeah a good year, to even come to say
I could love my child.
Oh I would never change Jayden now
for the world! [laughing]
He's part of our family, yeah!
Can mum go sit in this chair?
Oh you're going to go sit in this chair!
[Jeanine] How has Down's Syndrome affected him?
[Tanya] Yeah well, you have to compare him to
a typical seven year old,
and what your typical, your son's
doing now, compared to Jayden.
Your son's probably in sports teams,
and involved in sports and activities
and, you know, can talk to kids
and communicate, and Jayden
just doesn't have that communication.
He's getting there slowly, but it's slow.
Everything's takes longer.
Boo!
[Jayden screaming]
It's affecting everyone, not just Jayden.
It's affects the whole family,
Jayden having Down's Syndrome.
And for him, he doesn't understand
he has Down's Syndrome at the moment
So it hasn't affected him, he just thinks
he's one of the kids.
He thinks he can do just, everything
with the kids, and why shouldn't he?
And that's how we treat him bringing him up.
You wanna go up here?
What about one hand here, and [inaudible] across.
No!
Yeah you can do it! Look! You did it!
We didn't know until she was born and
actually, when she was born, she was
taken away from us quite quickly.
In the same room, but you know, it
was kind of alarms, bells and whistles and
midwife actually shielded... she placed herself
in between Lily May and myself,
so I actually couldn't see my baby.
And probably after about fifteen minutes
she was passed back to me and at that point
she was asked, I was actually asked,
"Does she look like your other children did?"
As soon as she asked me that,
I held my baby in my arms, I looked and
I said "She has Down's Syndrome"
and well, it was a huge shock.
Lily May also had surgery for a
heart condition similar to baby Dylan.
Lily May was very unwell, from birth
I guess, with her heart condition.
And, although she was very small,
they decided they had to operate at 6 weeks
to repair her heart condition because she
was in conducive heart failure.
You want me to spin it?
Fast or slow?
Fast!
Fast? You sure?
Yes!
Oh you're brave!
Like that?
The surgeons and everybody involved
even to this day, are just blown away
that she came through it,
firstly, and that she came through it
as well as she has.
That is one thing that is really
frightening to me, is my
little boy's going to have heart surgery.
That's a very scary thing, so to know
someone that has been through it
and I see her running around and
just being a normal child,
it's like, wow. That makes me just feel
just so much better.
It just gives me that confidence.
[laughing]
I haven't done this in a long time.
You're doing well.
[inaudible] it's close to home.
It is, and, it's the unknown.
[tattoo machine sounds]
By complete coincidence, Chris meets
another dad at his tattoo studio,
who has two daughters with Down's Syndrome.
The dad is laid back,
a guy Chris can relate to.
I was a dad, found out that my kid's got Down's,
and there was a lot of information and a lot
of knowledge for families and mums
but not a dad's perspective. That's how I felt.
The hugest thing I found, is that
a lot of people, sort of just,
label them up kids with Down's Syndrome
and they'll say "oh they're so lovely" and all this
sort of thing, and label them all exactly the same.
But because I've got two in the family,
I've found that they're totally different
from each other.
Yup, there is no difference.
No, you're a dad exactly the same, and it's
just another kid.
So, yeah there is no difference.
[Chris] They're individuals--
[Tony] Absolutely
[Chris] In each house it's an individual situation.
[Tony] Absolutely.
[Chris] That's awesome.
- [Tony] Yeah.
- [Chris] Yeah.
Hey...
Make yourself useful...
and help me fold some clean baby washing!
Oh cute! Oh they're so tiny!
I know, it's hard to judge how tiny
he's going to be though
because that's actually too big for a newborn.
Week by week, Jeanine's become more
prepared, in every way.
But it's important to her that her friends
are on board.
How was it telling, like, your girlfriends
and stuff like that, were they surprised
that you decided to go ahead and
keep the baby?
Not surprised that I would
do something like that
because they know my personality,
and I just couldn't do the other thing.
But they... a lot of them are really nervous
and just like, they're like "Oh my goodness,
I couldn't do it."
How do you think he's going to develop?
He might have problems with his speech.
Apparently that's quite a common one.
So his talking might be a lot slower.
He might not walk till he's two. I know
that that's very common in them as well.
Just as, I suppose, his reading and all that
will be slower. But then I hear that they have...
once they get set on a passion,
they're incredible at that.
Like it might be building motors,
which you know,
he's probably got a very big chance of
doing that in my household!
And then he may be fixated on that
and just put all his passion into that.
It might be art, you know, and
they do have - I think their milestones
are different or at least slower.
What I've heard.
[Brandon] [Inaudible]
Good boy.
And what happens is they've got...
we haven't got them in there at the moment,
but there's push rods in here.
One of the very first things
I learnt being a parent
is you never underestimate
the individual's ability ever.
And it's the first mistake that I think
any parent can make.
He may grow up and just not even be remotely
interested in cars, but hopefully,
these are the good footsteps for him learning
that he has the confidence to take on
anything he wants.
So... yeah...
Hi everyone, I'd just like to welcome you,
Melanie and Melissa.
It's the baby shower and so much more.
To Jeanine, this is a declaration
and a celebration of Dylan's life to come.
[general chatter and laughter]
Jeanine's aware not all the women here
share her vision.
Well I was two weeks less pregnant than her.
My first thought was "oh my god
I hope that's not me as well."
I cried, but not in a negative sense,
just in a... I guess it's a grief, in the sense
of grieving for what we thought she was
expecting, and you know,
that sort of thing.
From my perspective,
I probably don't know if I would.
It's a hard call, I mean, but I wouldn't
know I don't have children, so
I can't relate. And I think, you know,
if I'm in that position, I quite posiibly
would think differently.
It's very hard to know what decision I
would have made, because I...
I have in my mind I would have probably...
my immediate response
is I would have terminated,
because I've worked with
children with disabilities and I've
seen the spectrum of
children with disabilities,
but I also know in my heart,
that if I got to that point where you've totally
connected with the baby, don't know that I
would have been able to do it.
Yeah people won't necessarily accept him
which is sad. Obviously, the true friends
will be there and love him 100%
So yeah, that's the whole thing that they're
going to have to, well I'm sure they're
aware of it.
When I spoke to the people at the gym,
I said to them, this is what's happening,
I don't know if you know, but when
she tells you, please don't go "oh no, oh!"
Say "wow congratulations" you know,
because it's perspective, it's not...
it's not a sad occasion,
it's just perspective.
Yeah, people say I'm strong,
it's a matter of opinion. I just think I'm
being who I am and I'm doing
what I'm doing what I got to do
for my family and my little baby.
On the thirteenth week scan, as you all know,
I've probably rung pretty much every one of you.
And found out at fourteen weeks that we're
having a little baby with Down's Syndrome.
- Yep! [inaudible] mummy!
- Yep it's going to be cool! Yeah!
[laughter]
It's been a real, interesting and tough
and emotional journey, going through all this.
[people awwwing]
He's so well loved already, and he's not
even here yet.
It's incredible. So I'm looking forward
to meeting this little baby.
So again, I just want to say thank you all
so very much, every single one of you.
It's all touched my family's heart,
my husband as well, every one of us.
So thank you, for being there.
[applause]
Most people, when I told them that
I'm having a little baby with Down's Syndrome,
they were all like, "oh, oh my goodness,
your life is going to be totally ruined now."
Most people think "yeah that's the end of the world,
because you know, oh my goodness, he is
going to be with me for the rest of my life."
Well no, I mean, they can function
really well. I mean, I've seen it.
It's six weeks now until baby Dylan is
due to be born and the family has
had some alarming news.
Dylan has stopped growing.
We found out today, this week that
Dylan's growth has possibly stopped.
So that's a little bit of concern.
But nobody predicted this.
Jeanine's 38 weeks pregnant and being
rushed to theatre. A routine check
has revealed Dylan's heart is under stress.
Prepped the baby on the heart monitor today
and I had quite a nasty contraction, and
his heart rate plummeted right down,
and they're very concerned about that.
Best not wait till Monday, best to
get him out today.
Off to theatre...
And have a baby.
I'm really excited about meeting this
little angel - that's what I'm going to call him now,
my little angel. But I also am very anxious
about his condition and for his medical
side of it, with his heart.
So you know I'm going to be going through
a rollercoaster, my husband and I, and the kids
and my family, because you know,
they're part of this as well.
[nurse] Ok baby's coming..
[inaudible]
[baby crying]
[Chris] Overwhelming. Just takes your breath
and your words away.
I'm blown away, He's absolutely beautiful.
It's the ultimate moment in any delivery room.
But Jeanine and Chris bonded with
this baby months ago.
