Dateline, Growing Pains

Transcript

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