doi:10.1111/jpc.

13629

ORIGINAL ARTICLE

Growth attenuation therapy for children with severe physical and

cognitive disability: Practice and perspectives of New Zealand
paediatricians
Rebekah Wrigley,1 Nikki Kerruish,1 Paul L Hofman,2 Craig Jefferies,3 Allison J Pollock4 and Benjamin J Wheeler 1

1
Department of Women’s and Children’s Health, University of Otago, Dunedin, 2Liggins Institute, University of Auckland, 3Paediatric Diabetes and
Endocrinology Service, Starship Children’s Health, Auckland District Health Board, Auckland, New Zealand and 4Department of Pediatrics, University of
Wisconsin School of Medicine and Public Health, Madison, Wisconsin, United States

Aim: There are currently no clinical guidelines concerning the administration of growth attenuation therapy (GAT) for children (regardless of gen-
der) with both severe physical and cognitive disability in New Zealand (NZ). This survey aimed to explore the attitudes of paediatricians towards
GAT and the frequency of requests and initiation of GAT in NZ.
Methods: An online survey of paediatricians in NZ was undertaken. Questions covered both clinical experience with GAT and attitudes
towards it.
Results: Overall, the response rate was 55% (173/317) with 162 complete responses; 25% of respondents (41/166) reported enquiries about GAT.
Five had personally prescribed GAT; in total, six NZ children have undergone GAT. A total of 77% of respondents either believed GAT is appropriate
or were neutral on the subject. The majority of responders (59%) believed ethical approval should be obtained as part of preparation for GAT.
Conclusions: This is the first study to investigate attitudes and practices of NZ paediatricians regarding GAT for severely disabled children.
Results indicate a range of views but suggest that family requests for GAT do occur and that the majority of paediatricians are not opposed to
GAT in the appropriate ethical and clinical context. The development of practice guidelines for GAT may lead to a more informed decision-making
process about GAT for families and paediatricians.

Key words: children; disability; ethics; growth attenuation therapy.

What is already known on this topic What this paper adds

1 Growth attenuation therapy (GAT) is a controversial treatment
used to limit final adult height in children.
2 GAT has received recent media attention in Australia and
New Zealand (NZ), and over 100 severely disabled children
worldwide have received GAT.
3 There is a lack of information on the use of GAT in NZ, with no
clinical guidelines available.
1 Requests for growth attenuation therapy (GAT) are occurring in
New Zealand (NZ), with 41 paediatricians reporting family
requests.
2 At least six NZ children have undergone or are undergoing GAT.
3 The majority of NZ paediatricians appear neutral or supportive
regarding the concept of GAT.

Growth attenuation therapy (GAT) originated in the 1950s when
it was used to limit the growth of tall adolescent girls for aesthetic
reasons.1 GAT generally involves the administration of supraphy-
siological amounts of oestrogen to cause earlier onset of puberty
and premature maturation of growth plates, resulting in a degree
of reduced final adult height.2
The first documented usage of GAT to limit the growth of a
severely disabled child was reported in 2006 in the United States
Correspondence: Dr Benjamin J Wheeler, Department of Women’s and
Children’s Health, Dunedin School of Medicine, University of Otago,
201 Great King Street, Dunedin 9016, New Zealand. Fax: +64 3474
7817; email: ben.wheeler@otago.ac.nz
Conflict of interest: None declared.
Accepted for publication 15 May 2017.
of America (USA).2 This case involved Ashley, a girl with a static
encephalopathy resulting in profound cognitive and physical dis-
ability.2 The intention behind the parents’ controversial decision
to pursue GAT for their daughter was to improve her quality of
life by causing her to remain a size at which family activities
remained possible.3 Subsequently a small number of parents in
New Zealand (NZ; precise numbers unknown) and worldwide
(>100) have pursued similar treatment to allow them to continue
to provide long-term care for their children at home rather than
institutional care.4–6
Despite these perceived advantages, there is considerable ethi-
cal controversy regarding GAT, with opposition from advocates
for the rights of people with disability and some health profes-
sionals.3,7 Contentious issues involved with GAT include: deter-
mining what is best for individual disabled children; the extent to

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Growth attenuation in New Zealand R Wrigley et al.

which parents, doctors or even courts are entitled to make these

decisions; and the threshold of cognitive and physical disability
that might qualify a child for GAT; some sources have recom-
mended that GAT should only be considered for children with
severe cognitive and physical disability.2,8–10
Although there are anecdotal reports and discussions of ethical
issues related to GAT in the literature, there is little formal empir-
ical evidence concerning efficacy or side effects.10 In addition, the
current literature provides little guidance on how to actually per-
form GAT, including basic issues such as duration of therapy
(in the authors experience approximately 24–36 months), choice
of gender steroid and route of administration (cutaneous vs oral).
Clinical judgement, therefore, currently plays a major role in
determining whether a child should undergo GAT10 and how it is
performed. This project aimed to explore the attitudes of paedia-
tricians towards GAT and the frequency of requests and initiation
of GAT in NZ.

Methods
Study population and design
All NZ doctors currently registered as paediatric specialists as of
November 2016 were identified from the NZ Medical Council
website.11 Those registered but without a current practicing cer-
tificate were then excluded. In addition, where possible, a contact
paediatrician from each District Health Board (DHB) confirmed
the list of people for that DHB and added to it where appropriate.
Paediatricians whose email addresses could not be accurately
identified and/or generated based on DHB email format were
excluded. This resulted in a final eligible population of 317 pae-
diatricians. The process of compiling the list of potential partici-
pants is summarised in Figure 1.
A survey was then developed using SurveyMonkey (Palo Alto,
CA, USA). This survey was based on and extended from one used
in an American study surveying paediatric endocrinologists on
their attitudes and practices regarding GAT.5 Potential partici-
pants in the current study were approached via email between
November 2016 and January 2017. Email invitations included a
brief overview of the study and its purpose and a link to a Sur-
veyMonkey internet-based survey for those consenting to
proceed.
The survey collected: demographics, frequency of requests and
prescription of GAT, referral to other practitioners for GAT, fre-
quency of withholding treatment for precocious puberty and atti-
tudes towards GAT. For those participants who had prescribed
GAT, there were additional questions for each patient treated,
including the age at commencement, year treatment began,
whether ethical approval was obtained, kind of treatment pre-
scribed and whether any surgeries (e.g. hysterectomy) had been
performed (surgery is not part of standard GAT). The survey also
included space for comments.
Data analysis
Data obtained from the study were exported from Survey-
Monkey and analysed anonymously using Excel 2016 (version
16.0.6965.2115; Microsoft Corporation, Redmond, WA, USA)
Fig. 1 Flow chart for identification of potential participants. DHB, Dis-
trict Health Board; MCNZ, Medical Council of New Zealand.
for all descriptive and statistical analyses as appropriate. Cate-
gorical data are reported by frequency and percentage.
Ethics
The study protocol was approved by the University of Otago
Human Ethics Committee, reference number D16/360.
Results
In total, 173 of 317 paediatricians responded (55% response
rate). Of the 173 responses, 162 were complete. Basic demo-
graphics of participants are shown in Table 1.
Prior awareness of GAT for severely disabled children was
identified by 80% of respondents (133/166 who answered this
question), and all paediatric endocrinologists had prior
awareness.
Current practice
In total, 25% of respondents (41/166 who answered this ques-
tion) reported ever being asked about GAT for a severely disabled
child; 20 of these respondents had between two and five
inquiries.
Five paediatricians reported having prescribed GAT. Of these,
three were paediatric endocrinologists, one was a developmental
paediatrician, and one was a general paediatrician. Four of these
paediatricians have prescribed GAT once, while only one has pre-
scribed GAT twice. Three children were reported to have com-
pleted GAT treatment, and treatment for three children was
reported to be underway at the time of the survey (Table 2). Rea-
sons given for treatment included: allowing parents to care for
their child at home more easily, to make it easier for the child to
take part in family activities, to reduce/eliminate the need for
carers, to improve the child’s quality of life, to keep the child at a
size more in line with their developmental age, to reduce seizures
and improve muscle tone.

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R Wrigley et al. Growth attenuation in New Zealand

Table 1 Demographics of participating paediatricians†
Total (n = 166)‡
Gender
Male
Area of practice
General paediatrics
Developmental paediatrics
Paediatric endocrinology
Paediatric palliative care
Paediatric rehabilitation
Neonatology
Other
Current working arrangements
Public hospital
Private hospital
Academic
Other
†Percentages add to more than 100% because respondents were
allowed to select more than one specialty and working situation. ‡Of
the 173 respondents, 7 did not answer the demographics questions.
Treatment was begun for the children who have completed
treatment when they were eight, five and six years old in 2008,
2011 and 2012, respectively. The three children with treatment
underway at the time of the survey were 6, 9 and 12 years old in
2016. Treatment was begun for four children in NZ. The other
two children began treatment overseas (in South Korea and the
USA), in one case because an ethics committee refused to give
approval for the child to begin GAT in NZ. For all cases reported,
both ethics opinions and other clinicians were consulted before
commencing treatment. In addition, a hospital’s chief medical
officer was consulted for one case. Transdermal oestrogen was
the treatment of choice for five cases; oral oestrogen was used for
the other case. Only one respondent who prescribed GAT
reported side effects, which were breakthrough bleeding and
menorrhagia in one instance, with hysterectomy eventually
required. No other cases had surgery associated with GAT.
Regarding agreement with the statement ‘I have experienced
negative reactions from colleagues, media or the public following
growth attenuation therapy involvement’, two respondents who
prescribed GAT agreed, two were neutral, and one disagreed.
The main reasons for enquiries not resulting in GAT were con-
cerns that it was inappropriate for the child in question and fam-
n (%) ily deciding against it, cited by 17 respondents (respondents were
allowed to cite multiple reasons). Other reasons included concern
about side effects, legal concerns, personal beliefs about ethical
issues and ethics committee recommendation. One case then
92 (56) developed precocious puberty, making GAT redundant.
A total of 15 respondents had referred children and their
110 (66) families on to another potential provider of GAT (two paediatric
30 (18)
endocrinologists, five general paediatricians, three developmental
15 (9)
paediatricians, one neonatologist, one paediatric cardiologist, one
7 (4)
paediatric neurologist, one paediatric oncologist and one emer-
3 (2)
gency paediatrician). One general paediatrician referred a case to
12 (7)
a clinician in the UK.
28 (17)
In a related, but separate, issue, 12 respondents reported hav-
161 (98) ing withheld treatment of precocious puberty to limit ultimate
4 (2) linear growth.
26 (16)
5 (3) Attitudes
Survey responses revealed a range of attitudes towards GAT
(Table 3). One respondent who had prescribed GAT believed that
GAT should be routinely offered to parents/caregivers of children
with severe physical and cognitive disability rather than just dis-
cussed when raised by a parent, while two disagreed, and two
had a neutral opinion.
Regarding the statement ‘The final decision on whether or not
growth attenuation therapy is in the best interests of a child with
severe physical and cognitive disability should be made by a doc-
tor’, one respondent who had prescribed GAT agreed, two were
neutral, and two disagreed. Two respondents who had prescribed
GAT agreed with the statement ‘The final decision on whether or
not growth attenuation therapy is in the best interests of a child
with severe physical and cognitive disability should be made by
the child’s parents/caregivers’, and three were neutral.
A number of participants made free-text comments (Table 4).
The majority of these comments related to decision making and
prescribing of GAT, but a few reflected the perceived need of
some participants for more information in order to make an
informed decision. Several expressed views that the decision-
making process should be shared between the doctor and the
family. Ideas for improving the decision-making procedure
included having a policy for each hospital/country to eliminate
the need to go through ethics for each case, national debate so
that families can make more informed choices, referring each

Table 2 Summary of reported cases completed or currently undergoing growth attenuation therapy in New Zealand

Age (years) and year Ethics Treatment complete/

Case Gender GAT started Treatment Surgery† involved Country commenced Underway

1 Female 9, not reported TD oestrogen No Yes New Zealand Underway

2 Female 8, 2008 TD oestrogen No Yes New Zealand Complete
3 Female 5, 2011 TD oestrogen No Yes South Korea Complete
4 Female 6, 2012 TD oestrogen No Yes New Zealand Complete
5 Male 12, 2015 Oral oestrogen No Yes United States of America Underway
6 Female 6, 2016 TD oestrogen No Yes New Zealand Underway

†Associated hysterectomy and/or mastectomy (The Ashley treatment). GAD, growth attenuation therapy; TD, transdermal (patch).

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Table 3 Attitudes towards growth attenuation therapy

Respondents’ opinions, n (%)

Total (n = 164)

Statement Agree Neutral Disagree

Growth attenuation therapy for children with severe physical and cognitive disability is not appropriate. 38 (23) 59 (36) 67 (41)
Growth attenuation therapy should be routinely offered to parents/caregivers of children with severe physical 30 (18) 60 (37) 74 (45)
and cognitive disability, not just discussed when raised by a parent.
The final decision on whether or not growth attenuation therapy is in the best interests of a child with severe 29 (18) 59 (36) 76 (46)
physical and cognitive disability should be made by a doctor.
The final decision on whether or not growth attenuation therapy is in the best interests of a child with severe 50 (30) 67 (41) 47 (29)
physical and cognitive disability should be made by the child’s parents/caregivers.
When considering a child with severe physical and cognitive disability for growth attenuation, an ethics 95 (59) 31 (19) 36 (22)
committee should be involved.†

†In total, 162 participants answered this question.

case to a national committee of experts or consultation with a
multidisciplinary committee (including a general practitioner
and/or lay person). One respondent commented that requiring a
court order for GAT in the future may help protect children’s best
interests. Another respondent suggested that discussion about
GAT should not occur until after in-depth discussion with
families about strategies and supports available to care for adults
with disability and that a child’s primary paediatrician can play a
major role in this. Several respondents’ comments reflected their
perception of the complexity of decision making around GAT.
Discussion
This is the first study to investigate attitudes and practices regard-
ing GAT in NZ, and requests for GAT have clearly been occurring
despite evidence highlighting the ongoing controversial nature of
GAT. Compared to the Pollock et al. study in the USA (2014), this
study showed a lower percentage of paediatricians in NZ who
have been asked about GAT (24% vs. 35%) and who have pre-
scribed GAT (3% vs. 11%). However, this study included all
available paediatricians rather than focusing only on paediatric
endocrinologists, unlike the Pollock et al. study. No respondents
in this study reported having over five inquiries about GAT,
unlike the Pollock et al. study, which found that four paediatri-
cians in their sample had prescribed GAT more than five times.
It is likely that requests for GAT will continue as families gain
awareness of GAT through the media, internet and support
groups. There are currently no legal or clinical guidelines for GAT
in NZ, and controversy surrounding GAT remains, involving
issues of disability rights, parental autonomy and the best inter-
ests of the child.4 Different countries and even different clinicians
take different approaches to managing the tension between the
differing viewpoints on GAT.5,8,10 In Australia, it has been sug-
gested that GAT is not legal unless a court order authorising the
violation of a child’s bodily integrity as part of non-therapeutic
treatment is granted.7 As a few respondents commented, more
information and evidence on GAT would be beneficial to aid
informed discussion and decision making. More evidence could
be obtained with the creation of a registry, which would facilitate
the documentation of benefits and adverse events, as well as the
comparison of the effects of different treatment regimens.8
Development of clinical guidelines for GAT is likely to be valu-
able since a significant number of paediatricians are at least pre-
pared to consider this form of therapy. Broad consultation would
clearly be appropriate, including the potential participation of rel-
evant paediatric specialists, bioethicists, parents and experts in
the relevant legislation. Guidelines would then help ensure that
decision making is consistent with current medical knowledge as
well as relevant legislation and policy, for example, the
section on bodily integrity under development in the NZ Disabil-
ity Strategy, which could potentially require a court order for
therapies like GAT in the future.12 Clearly, this remains an area
of ethical controversy, with multiple articles addressing this
issue.3,4,7,9,13–16 One possible ethical framework that may assist in
the development of guidelines is the ‘zone of parental discretion’,
which permits parents to make the final decision on treatment
for their child unless the decision would cause a significant set-
back to the child’s well-being.15 Despite minimal evidence on the
long-term side effects of GAT, it has been argued that GAT is no
more dangerous than other currently accepted therapies/proce-
dures used for severely disabled paediatric patients.10
Nevertheless, several respondents in this study expressed con-
cern about the child’s best interests, particularly with regard to
bodily integrity. Some counterarguments to this concern are that
GAT would facilitate rather than restrict development of a
severely disabled child to his or her potential and that GAT can
improve quality of life, which could arguably be more important
to a child’s well-being than bodily integrity.4,13 Related to this,
however, is the subjective nature of ascertaining whether cogni-
tive and physical disability are severe enough to justify GAT; this
issue merits further discussion as the number of children under-
going GAT increases. One participant raised the issue of parents
restricting their child’s nutrition in order to limit increase in
weight (this issue has previously been reported in the litera-
ture17), suggesting that GAT could be an option that would pro-
mote the well-being of the child in such a case. Guidelines would
thus not eliminate the need for careful case-by-case analysis,
implied by several respondents to be necessary given the com-
plexity of individual family situations.

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Table 4 Selected free-text comments

Theme Statement

Need for more information/
Debate
Prescribing practices
Need for guidelines
Shared decision making
Complexity of decision
making
GAT versus inadequate feeding
of children
‘I haven’t done enough reading to answer any of the previous questions. I suspect the answer will be on a case by
case basis rather than an answer for all. I think there should be a national discussion, I’m not sure that you will
ever get consensus, but there should at least be some informed debate rather than letting families rely on
60 minutes for information’.
‘More evidence/information is needed to guide evidence based practice, and to inform both families and
paediatricians before this is considered…’
‘If hospital or country has a policy then each individual case would not need to get approval. Until this situation I
think it should go through ethics. Suggest decision to offer the treatment should be made by paed endo and
child’s usual paed. And then decision to proceed is parents’.
‘Challenging questions which require societal discussion and specialists’ consensus guidelines’.
‘The decision should be made as a collaboration between clinician and parent and the child if they are able to be
part of the discussion’.
‘Individual decisions likely to be best made by a small committee of e.g. developmental paediatrician, lay person(s),
adult general physician (or GP) etc’.
‘Final decision should be made by expert panel after getting all relevant submissions (medical, family, ethical) rather
than a Dr or parents (as earlier questions asked)’.
‘I think better access to an ethicist or a committee for help with decisions like this and for requests for sterilization
of females with disability would be really helpful’.
‘I feel that this process could be better supported in regional centres by tertiary endocrinologists, perhaps by way
of physician education or providing the initial drug information (including documenting discussion about possible
adverse effects) and prescription’.
‘I think that it is important to consider many factors including whether (1) Without attenuation the child’s caregivers
will not manage. (2) The attenuation will not make the child unusually short nor cause any other medical
problems. (3) The decision is a joint decision between the family and medical professionals’.
‘Complex area. It is my opinion that growth attenuation therapy is in essence creating ‘designer people’ for other’s
convenience and has major ethical implications as growth attenuation therapy is ultimately for the convenience of
the caregivers rather than necessarily the health of the individual’.
‘This is a very complex area. I am absolutely opposed to this becoming a treatment routinely offered. Each case
needs to be considered on its merits with multidisciplinary input and collaborative decision making. Ethics input is
essential although whether the current format of hospital ethics committees is the most appropriate is
debatable’.
‘I have much sympathy for the challenges many families face caring for children and young people with severe
disability. The more time spent with a family over time to develop a good relationship, the best placed a
Paediatrician is to have good conversations about their hopes dreams and fears… Only after all of the above
conversations do I think you can even begin to discuss growth attenuation. Therefore I think the child’s primary
paediatrician should have a large role in these discussions’.
‘Involvement of ethics committee would primarily be for purposes of medico-legal protection. Middle of the road
response re who takes primary responsibility for the decision reflects my viewpoint that this is a joint decision
between doctor and family, but I would nuance that by saying that it is likely to be primarily driven by the family.
Whilst I would not routinely offer this and think it is not ethically clear-cut, I can see the benefits re ability to
continue to care for a significantly disabled child and would be likely to support if parents keen after appropriate
discussion’.
‘We have clear expectations under UNCROC about this issue which I believe takes it out of sole medical or parental
control. The Ministry of Health and ODI are currently working on a revised disability strategy which has a
section on Bodily integrity. There is an argument that this form of intervention should require more than an
ethical consideration, but should be required to have a court order, to ensure that the child best interests are
identified and supported’.
‘On more than one occasion, I have encountered parents not feeding their disabled child their full nutritional
requirements as the heavier and bigger the child, the harder they will be to manage (e.g. lifting). This is not done
with the intention of starving their child as such but can create a tension with regards to health professionals
with regards to the overall wellbeing of the child. If growth attenuation would mean this does not happen – is it
the lesser of 2 evils’?
‘I have seen instances of children with feeding difficulties undernourished, at some level it had been felt it was
acceptable for them to be smaller than other children because it made cares easier. I strongly disagreed with this
as well’.

GAT, growth attenuation therapy; ODI, Office for Disability Issues; UNCROC, United Nations Convention on the Rights of the Child.

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Growth attenuation in New Zealand
A major strength of this study is the broad range of paediatricians
from a variety of specialties that were included. Interestingly, one
emergency paediatrician was asked about GAT. On the other hand,
the response rate of 54%, while consistent with other published sur-
veys, is a limitation and makes it difficult to determine how gener-
alisable the results are to all paediatricians in NZ. It is probable that
paediatricians with prior knowledge/experience of GAT were more
likely to respond. It is also possible that some requests for GAT were
missed due to this response rate. A few respondents noted they felt
that they needed more information to have an informed opinion on
GAT. Another limitation of this study was the brevity of the survey,
which to some extent fails to capture the nuances of opinions on
decision making around GAT. Importantly, this survey did not cover
opinions on hysterectomy and breast reduction surgery, which are
more controversial than GAT in isolation.16
Conclusions
This study confirms that requests for GAT are occurring in NZ, and
it is likely requests will increase in frequency over time. While many
paediatricians appear to be willing to support families requesting
GAT for their child, most would not be willing to routinely offer it to
families of severely disabled children. The creation of clinical guide-
lines may provide much needed clarity and support for families and
paediatricians as they consider embarking on this therapy.
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