Like
most kids, Georgia and Drayven Fehsenfeld are full of life. They are reaching
all the normal milestones for children their age.
JANINE
BOLTON: Turn around and stand up with your back against the door. Ready?
Stand up nice and tall and daddy's going to mark where the top of your head is
on the door.
Today
Rob and Janine want to see how much the kids have grown in the past few months.
ROB
FEHSENFELD: George, three years.
JANINE
BOLTON: Just wait. There. Look, there's Drayven.
But
they won't be measuring their eldest child, nine-year-old Daryl-Ann, that’s
because she reached her final height just over two years ago after they
deliberately stopped her from growing any taller.
JANINE
BOLTON: Wow, Georgia, you've almost caught up to Daryl. Daryl has
cerebral palsy, which is effectively a brain injury, very similar to if a child
has drowned. On top of that, she's got microcifili, because her brain hasn't
grown, so she has a small head.
Daryl-Ann's
birth went horribly wrong. It was a full six minutes before she took her first
breath. She's had seizures since the day she was born.
ROB
FEHSENFELD: You've got blue eyes. We can see the collar of your eyes.
JANINE
BOLTON: It’s been nine months anticipating a child's birth and then
somebody almost takes away the child you're expecting, and gives you back
something completely different. I remember clearly Rob and I had said we'd keep
going camping and doing all that fun stuff when we had a kid, we wouldn't let a
kid make daily life tricky, you know, we'd be that kind of parent. There's no
way you could take Daryl camping, no way.
With
two other small children, they rarely leave the house without a carer to help
with Daryl-Ann.
JANINE
BOLTON: We work so hard to keep everything routine. Daryl needs attention
for every single facet of her life. She can’t do anything on her own. She's
nearly ten years old, but she can't even tell us yes or no. So she needs
everything.
That
responsibility and the practicalities that came with her condition were
heartbreaking for Janine and Rob.
JANINE
BOLTON: Rob for a long time really, really hated putting her in a
wheelchair because you'd have to sit her in, you'd have to do all the straps
up, and then you would have to strap her feet in and he just hated it, because
he felt like he was punishing her putting her in this wheelchair. We really
didn't want to have to have hoists, and equipment, and all of that thing coming
between us.
So just
over four years ago, they made the decision to medically stunt Daryl-Ann's
growth. High doses of hormones speed up puberty causing growth plates at the
end of long bones like legs and arms to close sooner.
JANINE
BOLTON: It was just so sensible. Why wouldn't we do it? It just
seemed so natural.
By
rushing Daryl-Ann through an early puberty, she'd never grow to her full adult
height. Prescribing oestrogen for children dates back to the 40s when it was
used to treat excessive growth disorder. Then from the 50s through to the 70
very tall woman were not considered good marriage material so a new use
emerged. Some countries, including Australia, gave oestrogen to healthy
adolescent girls if they were at risk of growing too tall. By 2006, yet another
kind of patient was being treated.
FOX NEWS
REPORT: There’s a little girl in the state of Washington destined to stay
a little girl for the rest of her life.
Growth
attenuation as the treatment's called suddenly made headlines.
NEWS
REPORT: Her name is Ashley and she's nine years old but she has the
mental and physical abilities of a three month old, her parents made a decision
to essentially freeze her in time.
When
her growth attenuation treatment game public, it sparked huge ethical debate.
DR CHRIS
FEUDTNER, CHILDREN’S HOSPITAL OF PHILADELPHIA: Our society has a tendency
to want to solve big social problems with easy relatively speaking
technological fixes.
But the
controversy surrounding Ashley's case didn't put off families like the
Fehsenfelds. They saw a rare glimmer of hope.
JANINE BOLTON:
I was immersed in the world of disability so it didn't seem unnatural at all,
because everything we were doing was changing her.
Keeping
Daryl-Ann small means she can have fun with the rest of the family.
JANINE
BOLTON: Look, her eyes are very, very white, aren't they, Georgia, all the
lights, the noise, the bouncing.
REPORTER:
Do you think she enjoys this?
JANINE BOLTON:
She loves it, yes.
REPORTER:
How can you tell?
JANINE
BOLTON: When she's alert like this, when she's looking around, she's into
it. There's actually something going on that's big enough for her to notice.
She loves the noise, she loves the atmosphere. A kid like Daryl needs huge
sensory input to really get that excitement going. So you can see her head's
up, she never puts her head up like this unless she's really, really excited
about something. She's watching all the kids around her jumping. And, yeah, if
she was bigger than this, there's no way she'd get to do this.
Stunting
Daryl-Ann's growth made perfect sense to her parents. But they needed to find a
doctor who would agree to treat her.
DR BEN WHEELER,
PAEDIATRIC ENDOCRINOLOGIST: I was shocked. Of I said, oh, it sounds
pretty crazy to me, I don't want to be involved in that.
They
approached Dr Ben Wheeler, a paediatric endocrinologist.
DR BEN
WHEELER: This is a bone age X-ray for Daryl-Ann, it just shows the growth
rate plates in the hand.
The
family's request was counter to all of Doctor Wheeler's training and ethics.
DR BEN
WHEELER: Promoting growth, promoting health and wellbeing is what we do,
and on first pass it seemed like something that the child themselves weren't
consenting for, and that most people would consider a negative or detrimental
treatment. It became more and more clear to me that this wasn't a black and
whitish at all. It was trying to work our way through what was already I guess
a personal tragedy for Daryl-Ann and her family.
JANINE
BOLTON: Would you like one too, maybe we can get one for you to shake
too?
We have gone in. We would have had Daryl on our lap. He could see how natural and
how logical that was. I think that doctor part of him wanted today say no, no,
no, that's not right.
DR BEN
WHEELER: They spoke multiple times of the feeling that she was really
their baby and a permanent baby and in all fairness that's true, three or four
months developmental age. Again, a concept I hadn't really completely thought
of, to hold her and bug her like a baby they felt intuitively was required as
long as they could envisage that happening.
He
agreed to do the treatment if it was also approved by ethicists.
DR NIKKI
KERRUISH, BIOETHICIST: Thanks for coming, we are here to talk about
paediatric bioethics again.
Like Dr
Wheeler, they were heavily influenced of Janine and Rob's account of why they
wanted to keep Daryl-Ann small.
DR NIKKI KERRUISH:
They realised they could use hoists and other types of equipment, but they
wanted to maintain the closeness with Daryl-Ann and they felt they already had
that. It was very persuasive. There was one key phrase that I can recall from
the latter, that they would resist putting mechanics between them and their
daughter, to the very end.
DR BEN
WHEELER: This is a growth chart for Daryl-Ann, and what we see here,
these are some measurements.
With
ethics approval and the support of the hospital, Daryl-Ann's hormone treatment
began.
DR BEN
WHEELER: These are her growth measurements, and essentially when she's an
adult, looking at her bone age currently, she's going to sit way down here,
which is about 40 or more centimetres shorter than a comparable child of her
age. In terms of was it successful? We did stop her growing and her final
height is approximately 120 centimetres now.
While
there are just a few cases in NZ where disabled children have had their growth
stunted, worldwide there are about 70 recorded cases. Most are in the US.
KELLY VINCENT
MLC, SOUTH AUSTRALIAN PARLIAMENTARIAN: I think it's quite disturbing that
it seems to have been relatively easy for people to get access to such an
extreme medical intervention measure. I'm Kelly Vincent, and I’m the Dignity
for Disability Representative in the upper house of South Australian
Parliament.
Here in
Australia, there have been no publicly reported cases of growth attenuation
therapy – yet and Kelly Vincent wants to make sure there never is, unless
there's a medical need for it.
KELLY
VINCENT: We are very concerned about this, so we have called on the South
Australian Government to ensure that children and adults with disability are
legally protected from forced medical treatment.
Past
experience has left disability advocates alarmed by any medical treatment that
targets the disabled.
KELLY
VINCENT: There are many women who were sterilised because of their
disability, particularly during the 70s and 80s who have since come out and
said things like I want to have a period, I would have been able to raise
children with the right support and education and I think the same could be
true of growth attenuation. Who knows whether in a few years or decades time
whether these people will come out saying they feel a sense of loss.
REPORTER:
The people that we have met who have received this treatment would not be
capable in a few years time, of coming out and saying anything or communicating
anything.
KELLY
VINCENT: I think people end up being quite different to what is indicated
by medical advice, substantially, and frequently. The medical advice my parents
were given, for example, was don't love her too much, she's about to die and
here we are 28 years later.
There
they are a tight net trio, Suzi Paisley and her two boys, 12-year-old Kahn and
Gabe who is six. So much of their world is inside the family home.
GABE PAISLEY,
KAHN’S BROTHER: Don't worry, said the bear with a laugh. I'll soon show
you the way out.
SUZI PAISLEY,
KAHN’S MOTHER: Kahn is really responsive to our voices, particularly Gabe’s. I
think he really likes the imagery that Gabe brings.
Gabe
knows his big brother is fragile.
GABE
PAISLEY: When he's really sick or really sad, he can go quite greyish.
REPORTER:
What's it like when you are seeing that happen?
GABE
PAISLEY: Really scary.
When
Kahn was born, Suzi was told he wouldn't live more than a few weeks.
SUZI
PAISLEY: Kahn had a birth injury, spastic quadriplegic cerebral palsy. He
can't swallow, he can't eat. He really can't do anything on his own at all. I
think that he is possibly the most disabled child who is still alive at his age
in NZ.
Every
day has been a battle for survival for 12 long years and as he gets bigger, he
weighs 32 diagnoses now, Suzi's also battling.
SUZI
PAISLEY: When I carry Kahn down the hall in the mornings, we have got a
mirror at the end of the hallway, I always look and go, oh, my God, he's the
same size as me. He's already just about not manageable.
REPORTER:
And if he was bigger?
SUZI
PAISLEY: He would be unmanageable. I wouldn't be able to sit on the couch
and cuddle him. And that's a huge part of Kahn's day and it's also a huge
contributor to Kahn's quality of life and happiness. He loves a cuddle. I love
a cuddle. You know, we cuddle so well together.
Suzi's
a single mum and with Kahn so dependent on her, Gabe has become more
independent.
SUZI
PAISLEY: He sort of has to, because I have got Kahn for quite a bit of
the day.
We have to get
on your shoe lace-tying skills, hey. Good, okay breakfast?
Gabe has to run
around and get me medication and, yeah, make his own breakfast and get dressed
and... delicious!
REPORTER:
That looks fabulous.
SUZI
PAISLEY: What do you think, Kahnny. Mmm, delicious. Get it down you.
It's
not an easy life, but it is their best shot at being a family, if it can be
preserved.
SUZI
PAISLEY: We are just going to change your patch.
Six
months ago Suzi started the controversial treatment that will stop Kahn
reaching his full adult height. One doctor predicted that without it he could
grow as tall as six foot.
SUZI
PAISLEY: So this is the magic patch.
These
patches contain high doses of oestrogen bringing on early puberty in both boys
and girls.
SUZI
PAISLEY: Sorry, darling, is that a bit uncomfortable.
It also
rushes them through puberty so bones finish growing much sooner than they would
naturally.
SUZI
PAISLEY: That's the patch, you just pull off the sticky bits.
REPORTER:
That's it. That's all you have to do.
SUZI
PAISLEY: Yep. There you go, all done.
Disability
advocates are suspicious of parents seeking out the treatment. Kelly Vincent
thinks they have an inherent conflict of interest and consent should only be
granted after an independent review.
KELLY
VINCENT: It is it right of children, whether or not they are disabled to
grow to their potential physically, emotionally and mentally.
Just
this month, Kelly put forward a motion in the upper house of the South
Australian Parliament condemning growth attenuation therapy.
MINISTER:
I do commend her for bringing this before our chamber for exposing this issue.
MINISTER
2: Let us be clear, you do not lose your rights because you have a
disability.
MINISTER
3: I put the question that the motion be agreed to. All those in favour.
Aye. Against. Declare it carried.
It was
passed unanimously.
KELLY
VINCENT: If the person with the disability can't give clear consent then
the parent or care giver actually shouldn't be involved in giving that consent
either because ultimately the procedure is about making their care duties more
easy for them on a day-to-day basis.
REPORTER:
What about when you hear people say this treatment's all about making life more
convenient for the parents.
SUZI
PAISLEY: I say if my life is easier, his life is easier. It's a quality
of life thing for both of us. It's not a convenience thing for me. It may be a
by-product of it, but...
REPORTER:
It's not what's driving you?
SUZI
PAISLEY: No, it's not at all. If I'm coping, if I'm not breaking my back,
if I don't fall over trying to lift an adult, then life is going to be better
for him, isn't it. Kahn is so severely disabled. All his dignity and rights
have been taken away from him and that wasn't my doing. I'm trying so, so, so
hard to atone for that by doing all I can to make his life as good as it can
be.
And
Suzi's not the only one who feels this way. Rob and Janine certainly have no
regrets. They are convinced that Daryl-Ann has more to look forward to than she
would have if she'd kept growing.
JANINE
BOLTON: Swimming is awesome for just relaxing. She's always got some sort
of equipment, she's always got gravity forcing her down. In the pool she gets
to be completely weightless and just relax. Some people argue that, oh, well,
the kids get bigger, you have more carers, you have more equipment and you can
still do it. Well, actually people just stop doing it. They just stop.
Real life is,
that when these kids get bigger, their world gets smaller and they don't get to
do all of those things that a normal 10-year-old should be doing with their
family. We know that without this treatment, Daryl was going to get bigger and
we knew that there would be more problems. Now we have got through all the hard
stuff. Now we just get to enjoy being a family.
Reporter
Amos Roberts
Producer
Phillipa Hutchison
Camera
Amos Roberts
Editor
Ryan Walsh
Thanks
to
Shirley Turner
Suzi Paisley
Janine Bolton
and their families
Graphics
Michael
Brown
21st June 2016