Should Parents Be Allowed To Stop Their Children From Growing?

like most kids Georgia and Draven phezzan Feld are full of life coven reaching all the normal milestones for children their age you go hey turn around you stand up with your back against the door ready stand up nice and cool and daddy's just gonna mark where the top of your heater's on the door today Rob and Jeanine want to see how much the kids have grown in the past few months George three years with your hint is wait hey yeah look he's Draven but they won't be measuring their eldest child nine-year-old Daryl and that's because she reached her final height just over two years ago after they deliberately stopped her from growing any taller oh wow George you've almost caught up to Tara Daryl's got um cerebral palsy which is effectively a brain injury very similar to if a child is drowned on top of that she's got micro carefully because her brain hasn't ground so that means she's got a small heat darrel Anne'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 it's been nine months anticipating the child's birth and then somebody almost takes away the child you're expecting and gives you back something completely different I remember clearly Robin I had seeds you know would keep going camping and doing all that fun stuff um when we had a kid we wouldn't let her I can't make it make daily life tricky you know would be that kind of parent there's no way you could take Darrell camping no way with two other small children they rarely leave the house without a carer to help with Darrell and we work so hard to keep everything routine yeah Darrell Darrell needs attention for every single facet of her life she can't do anything alone she's nearly 10 years old but she can't even tell us yes or no sorry she needs everything that responsibility and the practicalities that came with her condition were heartbreaking for Janine and Rob but for a long time I really really hated put in here in a wheelchair because you'd have to sit around and then you'd have to put do all the straps up and then you'd have to strike her feet in and he just hated it because it felt like he was punishing her putting her in this wheelchair we really didn't want to have to have hoists in equipment and all that thing coming between us so just over four years ago they made the decision to medically stunt geralyn's growth high doses of hormones speed up puberty wasn't up growth plates at the end of long bones like legs and arms to close sooner it was just so sensible why wouldn't we do it it just seems so natural by rushing Darrell and through an early puberty she'd never grow to her full adult height prescribing estrogen for children dates back to the 1940s and it was used to treat excessive growth disorder then from the 50s through to the 70s very tall women were not considered good marriage material so a new use emerged some countries including Australia gave estrogen to healthy adolescent girls if they were at risk of growing too tall by 2006 yet another kind of patient was being treated as a little girl in a state of Washington destined to stay a little girl for the rest of her life growth attenuation as the treatments called suddenly made headlines 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 with a treatment when her growth attenuation treatment became public it's sparked huge ethical debate 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 pheasant films they saw a rare glimmer of hope I was immersed in the world of disability so it doesn't seem unnatural at all because everything we're doing was was changing here good bouncing children keeping Daryl and small means she can have fun with the rest of the family look at eyes are very very wide I think Georgia all the lights all the noise or the bouncing good name didn't you enjoy his kicks she loves it yeah how can you tell when she's alert like this when she's looking around she's into it it was 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 who heads up she never puts her head up like this and she's really really excited about something she's watching all the kids around they're jumping and yeah yeah if she was bigger than this there's no way she'd get to do this stunting geralyn's growth made perfect sense to her parents but they needed to find a doctor who'd agree to treat him I was shocked I said oh I look at it sounds pretty crazy to me I don't want to be involved in it they approached dr. Ben wheeler a pediatric endocrinologist so this is a bone age x-ray for Daryl Annan this just shows the growth plates in the hand the family's request was counter to all of dr. wheelers training and ethics promoting growth promoting health and well-being is what we do and on first pass this seemed like something that the child themselves weren't consenting for and that most people would consider a negative or detrimental treatment you got the counselor look became more and more clear to me that this wasn't a black-and-white a show at all it was trying to work our way through what was already I guess a personal tragedy for Darrell Ann and her family to see like 1 2 maybe we can get get maracas for you and you can take one say yes yep Chuck we would have gone and we would have had Darren Elliot let's go because he could see how how natural and how logical and that was it doctor part of them wanted to say no no that's not right they spoke multiple times of the feeling that she was really their baby and sort of a permanent baby in all fairness that's true she's three or four months developmental age the again concept I hadn't really completely thought of that to hold her and hug her like a baby was something Dave just felt intuitively was required as long as they could envisage that anything he agreed to do the treatment if it was also approved by ethicists so thanks for coming we're here to talk about pediatric bioethics again like dr. wheeler they were heavily influenced by Jeanine and Rob's account of why they wanted to keep Daryl and small they realized that they could use hoists and other types of equipment but they wanted to maintain the closeness with Daryl Ann and that they felt that they already had it was very persuasive Eleanor's one sort of key phrase I can recall from the letter that they would resist putting mechanics between them and their daughter to the very end okay so this is a growth chart for Daryl N and what we see here these are some measurements with ethics approval and the support at the hospital Daryl Ann's hormone treatment began these are 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 centimeters shorter than a comparable child of her age in terms of was it successful but we did stop her growing and her final height is approximately 120 centimeters now while there's just a few cases in New Zealand where disabled children have had their growth stunted worldwide there are about 70 recorded cases most in the United States I think it's quite disturbing that it seems to be relatively easy for people to get access to such an extreme extreme medical intervention measure I'm Kelly Vincent and I'm the dignity for disability representative in the Upper House of South Stoney apartment 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 so I very concerned only about this and so we've called on South Australian government to ensure that children and adults with disability are legally protected from force medical treatment past experience has left disability advocates alarmed by any medical treatment that targets the disabled there were many women who were sterilized because of their disability particularly during the 70s and 80s who since come out saying things like I want to have a period I would have been able to raise children with the right support and the right education and I think the same could be true of growth attenuation who knows whether in a few years or a few decades time whether these same people will come out saying that they feel a sense of loss 3 the people that we've met though who've received this treatment would not be capable in a few years time of coming out and saying anything or communicating anything 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 he's about to die and here we are 28 years later you here was strolling in the forest one day when he met a small boy sitting on a jury they're a tight-knit trio Susie Paisley and her two boys 12 year-old carne and Gabe who's six so much of their world is inside the family home done boy seemed to deal with the laughs I'll soon show you the way out can is really responsive to our voices and particular Gabe's and I think he really likes the sort of energy that gave brings Gabe knows his big brother is fragile when he's really sick all really sad um he can go quite glacier SHhhh what's it like when you're seeing that really scary and Khan was born Suzy was told that he wouldn't live more than a few weeks can Peter and Booth injury his official diagnosis as [ __ ] quadriplegic cerebral palsy he can't swallow he can't eat and he really can't do anything on his own at all he caning sucks um I think that he is possibly the most disabled child who is still alive at his age in New Zealand every day has been a battle for survival for 12 long years and as he gets bigger and weighs 32 kilograms now Suzy's also battling when I carry can down the hall in the morning we've got a mirror at the end of the hallway I always look and go oh my gosh he's the same size as me he's already just just about not manageable and if he was bigger he would be unmanageable we just I wouldn't be able to sit on the couch and cuddle him and it's a huge part of cans day and it's also a huge contributor to cans quality of life and happiness he loves the cuddle I love a cuddle you know we cuddle so well together Suzy's a single mum and with Karn so dependent on her Gabe's become more independent I saw the hair today because I've got kin of my name for quite a bit of the day we could get on to your shoelace tying skills are you good okay brick Preston Gabe haste to run around and get medication and you make his own breakfast and get dressed and all delicious yeah fabulous what do you think Kenny delicious nice no breakfast yes okey-dokey get it down yet it's not an easy life but it is their best shot at being a family if it can be preserved okay can we changing pitch hey six months ago Susie started the controversial treatment that will stop can reaching his full adult height one doctor predicted that without it he could grow as tall as six foot the [ __ ] pitch these patches contain high doses of estrogen bringing on early puberty and both boys and girls it also rushes them through puberty so bones finish growing much sooner than they would naturally selects the patch and you just pull off the sticky bits that's it that's all you have to do yeah okay well done disability advocates are suspicious of parents seeking out the treatment Kelli Vincent thinks they have an inherent conflict of interest and consent should only be granted after an independent review there is the right of children whether or not they are disabled to grow up 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 I do commend her for bringing this before our chamber for exposing this issue but let us be clear you do not lose your rights because you have a disability I put the question there motion be agreed to while there's a father against that carried it was passed unanimously if the person with disability can't give clear consent then the parent or care caregiver actually shouldn't be involved in giving that consent either because ultimately the procedure is about making their care duties are more easy for them on a day to day basis what about when you hear people say that this treatment is all about making life more convenient for the parents I say that if my life is easier his life is easier it's a quality of life thing for both of us that's not a convenience thing for me that may be a byproduct of it but it's not them it's not what's driving no that's not at all if I'm coping if I'm not breaking my back if I don't fall over trying to lift the middle the knife is going to be better for hermas No come as so severely disabled okay you know all his dignity and rights have been taken away from him and it wasn't my doing and I'm trying so so so hard to atone for that by doing all I can to make his life as good as a candy and Suzi's not the only one who feels this way Robyn Janine certainly have no regrets it convinced that Darryl an has more to look forward to and she would have if she'd kept growing one two ah serving us awesome for just relaxing you know she's always and some sort of equipment she's always got gravity forcing me down and the poor she has to be completely weightless and just relax some people argue this oh well you know the Piscopo unit appears 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 there will be and they they don't get to do all of those things that a normal ten-year-old should be doing with these we know that without this treatment Darryl was going to get bigger and we knew that there were people problems now we've gone through all the Hat stuff now we just get to enjoy you you

Channel: Journeyman Pictures

Views: 1,520,819

Keywords: child disability, should parents be allowed to stop their children from growing, new zealand, growth, documentary, sbs dateline, microcephaly, sbs australia, child, growth attenuation therapy, disabled kids, health, disability, cerebral palsy, family, dateline, parents, stop children from growing, children growing, stunted growth, growth attenuation, journeyman pictures

Id: Z856vlXg3cc

Length: 22min 6sec (1326 seconds)

Published: Fri Jul 01 2016