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Having a baby with Down Syndrome



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♪[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.