Re: Edith

[2014] FamCA 908

FAMILY COURT OF AUSTRALIA

RE: EDITH [2014] FamCA 908

FAMILY LAW – CHILDREN – MEDICAL PROCEDURE – Applicant parents seek authorisation for a special medical procedure – proposed treatment is a laparoscopic partial hysterectomy – where the child does not have the capacity to consent to the proposed medical procedure – where the proposed medical procedure is recommended and supported by the medical practitioners involved in the child’s care – satisfied that it is in the child’s best interests to authorise the proposed treatment.

Family Law Act 1975 (Cth) s 67ZC
Family Law Rules 2004 (Cth)

Gillick v West Norfolk and Wisbech Area Health Authority [1986] AC 112
Re Alex: Hormonal Treatment for Gender Identity Dysphoria (2004) FLC 93-175
Re Angela (Special Medical Procedure) [2010] FamCA 98
Secretary, Department of Health and Community Services v JWB and SMB (1992) FLC 92-293

APPLICANTS: The Mother and the Father

Independent Children’s Lawyer

File No: By Court Order File Number is suppressed

DATE DELIVERED: 23 October 2014

JUDGMENT OF: Macmillan J

HEARING DATE: 29 September 2014

REPRESENTATION

By Court Order the names of counsel and solicitors have been suppressed

ORDERS

IT IS ORDERED THAT

1. The surgical removal of Edith’s uterus is hereby authorised by the Court.

2. To the extent that it is necessary, the father and the mother are hereby authorised to consent to the removal of Edith’s uterus on her behalf.

3. The applicants’ Amended Initiating Application filed 28 August 2014 be otherwise dismissed and the matter be removed from the list of cases awaiting hearing.

IT IS NOTED that publication of this judgment by this Court under the pseudonym Re: Edith has been approved by the Chief Justice pursuant to s 121(9)(g) of the Family Law Act 1975 (Cth).

FAMILY COURT OF AUSTRALIA

File No: By Court Order File Number is suppressed

The Mother and the Father

Applicants

And

Independent Children’s Lawyer

REASONS FOR JUDGMENT

INTRODUCTION

1. Edith was born in 1997 and is now 17 years of age. Edith, who has been assessed as having the mental age and IQ of a five year old, requires full time care and assistance.

2. Edith was born with Ataxia Telangiectasia, which is a rare neurological disease. As a direct result of having Ataxia Telangiectasia, Edith has a severe intellectual disability, ataxic cerebral palsy, a sensory processing disorder and her behaviour is challenging. She also has an immune deficiency which has resulted in her having recurrent infections and, in particular, ear infections which have caused hearing impairment and behavioural changes. Dr H, Edith’s paediatrician, gave evidence that there was no prospect of any improvement in Edith’s long-term prognosis.

3. Edith’s father is 46 years of age and works full time as a skilled tradesman. Edith’s mother, who is 44 years of age, is Edith’s full time carer.

4. Edith’s parents were married in 1992.  They have two other adult children: A, who is 21 years of age and has just completed a university degree, and Y, who is 19 years of age and is a full time university student.  They both live at home with Edith and the mother and father, who are the applicants in these proceedings.

5. Although Edith’s mother is her primary carer, the mother says that their whole family loves Edith and is involved in and committed to her ongoing care and support. It is clearly the case, as deposed to by the mother, that Edith’s care presents enormous day-to-day challenges mentally, physically and emotionally for both Edith and her family.  In her affidavit sworn and filed on 28 August 2014 the mother describes various aspects of Edith’s life and the care that she requires, as follows:

   ·Edith cannot dress herself, bathe herself, brush her hair, clean her teeth or eat without full assistance. ‘Morning and evening baths and dressing are a physical battle [and] Edith often lashes out violently’;

   ·Edith can only eat smooth foods and regurgitates any foods she does not know or like;

   ·Edith is both bladder and bowel incontinent, must wear a nappy and requires full assistance with changing her nappies;

   ·Edith has only limited communication skills and ‘will only speak when she is in a familiar environment’.

   ·Edith does not express verbally if she is experiencing pain or distress and may instead become very quiet, irritable or angry, sometimes banging objects or chewing on her fingers at such times;

   ·Edith suffers from extreme anxiety and is distressed by things like loud noises, crowds, thunder, strangers and anything unfamiliar;

   ·Edith regularly self-mutilates, which includes biting, rubbing and picking at her body, often breaking the skin; and

   ·Edith cannot stand foreign objects on her body and will also pick at them. Her ‘self-mutilation is relentless’.

6. Edith began menstruating when she was 12 years of age. It is the impact of Edith’s menses and the detrimental effect that this has had on her life which has ultimately led her parents, based upon the recommendations of Edith’s various medical practitioners, to seek authorisation from this Court for Edith to undergo a laparoscopic partial hysterectomy.  

7. Edith’s parents seek orders in the following terms:

   ·that it is declared that the removal of Edith’s uterus is in her best interests;

   ·that the removal of Edith’s uterus is authorised; and

   ·that to the extent necessary the mother and father are authorised to consent to the removal of Edith’s uterus on her behalf.

EVIDENCE

1. The applicants relied upon the following documents in support of their application:

   ·their Amended Initiating Application filed 28 August 2014;

   ·the mother’s affidavit sworn and filed 28 August 2014;

   ·the father’s affidavit sworn and filed 28 August 2014;

   ·the affidavit of Dr D sworn and filed 28 August 2014;

   ·the affidavit of Dr H sworn 22 August 2014 and filed 28 August 2014;

   ·the affidavit of Mr C  sworn and filed 28 August 2014;

   ·the affidavit of Ms S sworn 8 September 2014 and filed 11 September 2014;

   ·the affidavit of Dr W sworn 11 September 2014 and filed 12 September 2014; and

   ·the applicants’ outline of case document dated 22 September 2014.

2. The Independent Children’s Lawyer, in addition to the affidavit material relied upon by the applicants as above, also relied upon the following further material:

   ·the mother’s first affidavit sworn 6 August 2014 and filed 7 August 2014;

   ·the mother’s second affidavit sworn 6 August 2014 and filed 7 August 2014;

   ·the affidavit of Dr H sworn 4 September 2014 and filed 8 September 2014;

   ·the affidavit of Dr D sworn 3 September 2014 and filed 8 September 2014; and

   ·the Independent Children’s Lawyer’s summary of argument filed 26 September 2014.

3. The mother gave brief oral evidence in relation to some incidents that have occurred since she filed her affidavit of evidence-in-chief. The mother was also briefly cross-examined. I found the mother to be a careful and thoughtful witness and her love and concern for Edith was evident from her evidence.

4. There was limited cross-examination of the mother and both Dr H and Dr W. Dr H and Dr W gave their evidence at the same time and were able to comment on each other’s evidence. The evidence they gave was cogent and considered. Although there were a number of limited issues about which their evidence differed, this was, in my view, a reflection of their particular areas of expertise and speciality rather than a question of credit. The main issue about which they disagreed was whether or not Edith might remove any intrauterine device (IUD) that might be inserted as an alternative to the proposed removal of her uterus. Although Dr W thought it was unlikely that Edith would be able to remove such a device herself, Dr H, who is the paediatrician who has treated Edith for most of her life and has considerable experience of her behaviour, thought it was a possibility that she could remove the device. It is not necessary to choose the evidence of either of these expert witnesses over the other for the purposes of the decision I must make. It is suffice to say that neither rules out the possibility of Edith removing the IUD herself. 

5. Although the relevant government agency was given notice of the proceedings by the Independent Children’s Lawyer pursuant to the chambers orders made by Registrar Field on 7 August 2014, was served with the affidavit material relied upon by the applicants and the Independent Children’s Lawyer, and was present in Court both at the mention of the matter before me on 14 August 2014 and at the hearing on 29 September 2014, the agency did not seek to either intervene in the proceedings or appear as amicus curiae.

RELEVANT LEGAL PRINCIPLES

1. Pursuant to s 61C(1) of the Family Law Act 1975 (Cth) (“the Act”) each of the parents of a child under the age of 18 has parental responsibility for that child. Parental responsibility is defined as ‘all of the duties, powers, responsibilities and authority which, by law, parents have in relation to children’ (s 61B). In most circumstances, decisions in relation to a child’s health and medical treatment would be the responsibility of the parent or parents of a child and a normal exercise of their parental responsibility. There are, however, some qualifications.

2. In Gillick v West Norfolk and Wisbech Area Health Authority [1986] AC 112 (“Gillick”), Lord Scarman said, in relation to what is now described as Gillick competence, at 188 to 189 as follows:

   In the light of the foregoing I would hold that as a matter of law the parental right to determine whether or not their minor child below the age of 16 will have medical treatment terminates if and when the child achieves a sufficient understanding and intelligence to enable him or her to understand fully what is proposed. It will be a question of fact whether a child seeking advice has sufficient understanding of what is involved to give a consent valid in law. Until the child achieves the capacity to consent, the parental right to make the decision continues save only in exceptional circumstances.

3. I am satisfied that in this case Edith does not have and is never going to have the capacity to give consent to the proposed medical procedure.  However, although the parents in this case have parental responsibility for Edith, that does not mean that the applicants in this case can authorise the proposed removal of Edith’s uterus.

4. In Secretary, Department of Health and Community Services v JWB and SMB (1992) FLC 92-293 (“Marion’s case”) the High Court (per Mason CJ, Dawson, Toohey and Gaudron JJ) said at [79180] as follows:

   ... But first it is necessary to make clear that, in speaking of sterilisation in this context, we are not referring to sterilisation which is a by-product of surgery appropriately carried out to treat some malfunction or disease. We hesitate to use the expressions “therapeutic” and “non-therapeutic”, because of their uncertainty. But it is necessary to make the distinction, however unclear the dividing line may be.

   As a starting point, sterilisation requires invasive, irreversible and major surgery. But so do, for example, an appendectomy and some cosmetic surgery, both of which, in our opinion, come within the ordinary scope of a parent to consent to. However, other factors exist which have the combined effect of marking out the decision to authorise sterilisation as a special case. Court authorisation is required, first, because of the significant risk of making the wrong decision, either as to a child’s present or future capacity to consent or about what are the best interests of a child who cannot consent, and secondly, because the consequences of a wrong decision are particularly grave.

5. The plurality, identifying the factors that contribute to the risk of a wrong decision being made at [79181], referred to the fact that ‘[t]he decision by a parent that an intellectually disabled child be sterilised may involve not only the interests of the child, but also the independent and possibly conflicting (though legitimate) interests of the parents and other family members. There is no doubt that caring for a seriously handicapped child adds a significant burden to the ordinarily demanding task of caring for children.’ However, the plurality also said that ‘[s]ubject to the overriding criterion of the child’s welfare, the interests of other family members, particularly primary care-givers, are relevant to a court’s decision whether to authorise sterilisation. However, court involvement ensures, in the case of conflict, that the child’s interests prevail.’

6. In Re Alex: Hormonal Treatment for Gender Identity Dysphoria (2004) FLC 93-175, Nicholson CJ, summarising what the High Court had said in Marion’s case, said at [153] as follows:

   Marion’s case involved an application for the sterilisation of a 14-year-old teenager with a severe intellectual disability for the purpose of “preventing pregnancy and menstruation with its psychological and behavioural consequences”. The gravamen of the decision was that if a child or young person cannot consent her/himself to a medical procedure, parental consent (which for present purposes may be equated with that of a guardian) is ineffective where the proposed intervention is:

   ·   invasive, permanent and irreversible; and

   ·   not for the purpose of curing a malfunction or disease.

7. In this case, as it was in the case of Re Angela (Special Medical Procedure) [2010] FamCA 98 (“Re Angela”), sterilisation is a consequence rather than the purpose of the proposed medical procedure. In Re Angela, Cronin J made the point that it was a ‘fine line’ between the decision being one falling within the bounds of normal parental responsibility and one that, having regard to the decision in Marion’s case, requires this Court’s authorisation. His Honour’s comments are apposite in this case. The High Court in Marion’s case distinguished between sterilisation for that specific purpose and sterilisation as ‘a by-product of surgery appropriately carried out to treat some malfunction or disease.’ The High Court, although indicating that it was reluctant to do so, also distinguished in that context between therapeutic and non-therapeutic.

8. Whilst the proposed medical procedure in this case may not be, strictly speaking, required to treat ‘some malfunction or disease’ suffered by Edith, it is arguably necessary for therapeutic reasons, in the more general sense of the meaning of that word. The reasons for the treatment in Edith’s case are both physiological and psychological, as well as in relation to her general welfare and quality of life. Although it was not the subject of argument before me and the matter proceeded on the basis that this Court’s authorisation was required for the proposed treatment, it is indeed a fine line as to whether in circumstances such as in this case the decision should be one which falls within the bounds of parental responsibility or is one that requires the authorisation of this Court. The necessity to seek Court authorisation, both because of the stress to Edith’s parents and the cost associated with legal proceedings (although I note that in this case the applicants were represented on a pro bono basis at the hearing), will almost certainly add to the many challenges associated with Edith’s care.  

9. Although sterilisation is a consequence rather than the intended purpose of the proposed medical procedure in this case, that procedure is invasive, permanent and irreversible and not as described in Marion’s case for the purpose of curing a malfunction or disease. Having regard to the decision of the High Court in Marion’s case it is in those circumstances a medical procedure which requires this Court’s authorisation.

10. In Marion’s case, the High Court held that the welfare jurisdiction conferred upon this Court was akin to the parens patriae jurisdiction (at [79184]) and that this Court had the jurisdiction to authorise medical procedures which did not fall ‘within the ordinary scope of parental power to consent to medical treatment’ (at [79166]).

11. Following the decision in Marion’s case, in 1995 the Act was amended to include s 67ZC which provides as follows:

    Orders relating to welfare of children

    (1)In addition to the jurisdiction that a court has under this Part in relation to children, the court also has jurisdiction to make orders relating to the welfare of children.

    Note: Division 4 of Part XIIIAA (International protection of children) may affect the jurisdiction of a court to make an order relating to the welfare of a child.

    (2)In deciding whether to make an order under subsection (1) in relation to a child, a court must regard the best interests of the child as the paramount consideration.

    Note: Sections 60CB and 60CG deal with how a court determines a child’s best interests.

12. It is this section which confers the jurisdiction upon this Court to make the orders sought by the parents in this case and requires the Court, in considering such applications, to regard the best interests of the child the subject of the application as the paramount consideration.

13. Rule 4.09(1) of the Family Law Rules 2004 (Cth) provides that evidence must be given to satisfy the Court that the proposed medical procedure is in the best interests of the child. Pursuant to rule 4.09(2) that evidence must include evidence from a medical, psychological or other relevant expert witness that establishes the following:

    (a)the exact nature and purpose of the proposed medical procedure;

    (b)the particular condition of the child for which the procedure is required;

    (c)the likely long-term physical, social and psychological effects on the child:

    i)if the procedure is carried out; and

    ii)if the procedure is not carried out;

    (d)the nature and degree of any risk to the child from the procedure;

    (e)if alternative and less invasive treatment is available -- the reason the procedure is recommended instead of the alternative treatments;

    (f)that the procedure is necessary for the welfare of the child;

    (g)if the child is capable of making an informed decision about the procedure -- whether the child agrees to the procedure;

    (h)if the child is incapable of making an informed decision about the procedure -- that the child:

    i)is currently incapable of making an informed decision; and

    ii)is unlikely to develop sufficiently to be able to make an informed decision within the time in which the procedure should be carried out, or within the foreseeable future;

    (i)whether the child’s parents or carer agree to the procedure.

EDITH’S HEALTH 

1. Edith has multiple health issues and her health is generally poor. Her medical history is set out in some detail in the mother’s affidavit sworn 28 August 2014. That evidence is confirmed by the evidence of her various medical practitioners, in particular the evidence of Dr H, who has been treating Edith since she was approximately five weeks old, and Mr C, her ENT Surgeon who has been treating her for 10 years. Edith’s medical history, as summarised by the mother in her affidavit sworn and filed 28 August 2014, and commencing from the year of her birth is as follows:

   ·In 1997, [Edith] had multiple admissions to the [Z] and [R] Hospitals in connection with pneumonia and an ear infection;

   ·Between 1998 and 2002, [Edith] had multiple admissions to the [Z] and [R] Hospitals in relation to a number of infections. She underwent various tests and treatments, including MRI scans, x-rays, CT scans, immunoglobin and grommets;

   ·In 2003, [Edith] had 13 admissions to the [R] Hospital for immunoglobin and infuse a port insertion;

   ·Between 2004 and 2008, [Edith] had multiple admissions to the [Z] and [R] Hospital[s] for treatment of infections and to undergo mastoidectomies. She underwent numerous tests and scans and underwent immunoglobin and infuse a port removal and replacement[;]

   ·In or around 2006, when she was approximately 9 years of age, [Edith] [Edith] underwent a Tonsillectomy and an Adenoidectomy;

   ·In or around 2008, when she was approximately 11 years of age, [Edith] underwent a removal of reactive lymph nodes;

   ·In 2009, [Edith] had multiple admissions to the [R] Hospital for dental procedures;

   ·Between 2013 and 2014, [Edith] had multiple admissions to the [Z] and [R] Hospitals for infections and dental procedures;

   ·On 19 August 2014, [Edith] underwent her fourth mastoidectomy, which is an ear related surgery whereby the mastoid bone behind the ear is drilled out. [Edith] has had both of her ear drums repaired with muscle grafts;

   ·At the same time on 19 August 2014, [Edith] underwent a biopsy for suspected pre-cancerous cells on her vulva.    

1. The mother’s evidence, which I accept, is that Edith has had to date 84 hospital admissions and 49 general anaesthetics for various procedures, surgeries and scans, including IV insertions, central line insertions, X-rays, CT scans and MRI scans, echocardiograms, ECG’s, EEG’s, immune therapy and grommets. All of Edith’s dental treatment, including x-rays and tooth/gum examinations, is required to be carried out under a general anaesthetic.

2. This long history of medical care and treatment, notwithstanding the necessity for that treatment, has had a significant impact upon Edith.  Edith does not have the capacity to understand either the reason or need for the treatment she is receiving or what is in fact happening to her during that treatment and, according to her mother and those caring for her, Edith has become increasingly frightened and confused.

3. The mother describes Edith as being unable to tolerate anyone other than herself touching her and, even then, only on rare occasions. The mother deposes that Edith is extremely averse to medical and nursing staff or her teachers touching her. Ms S, who has provided nursing care to Edith since she was one year old, deposed that Edith ‘has proven to be one of our most challenging patients to nurse. When [Edith] is approached by staff for any procedure she becomes highly distressed and lashes out with her hands and cries and screams.’

4. The reason Edith has had so many general anaesthetics is because that is the only way in which any treatment can be administered to her. Dr H’s evidence is that Edith ‘is unable to tolerate any medication given orally or by injection’ and that ‘[a]ll medication has to be administered through an intravenous line or infuser port (this had to be removed due to infection).’  The mother gave some examples of the difficulties associated with administering medication to Edith and the problems that have been associated with the various methods that have been used, as follows:

   ·Edith’s first infuse-a-port was inserted when she was approximately six years of age and had to be removed and replaced when she was 10 years of age due to infection.

   ·The second infuse-a-port was removed when she was 12 years of age due to infection transfer caused by Edith picking at the site, as a result of which she developed a serious Strep/MRSA infection.  Another central line could not be inserted due to the presence of infection in her bloodstream.

   ·For the next three to four years Edith was placed under anaesthetic for monthly infusions of Intragram.

   ·Between 2001 and 2004 the father and mother trialled an arrangement whereby they would administer Edith’s immunoglobin via sub-cutaneous infusions at home three times each week because staff at the R Hospital were unable to obtain access via an IV catheter due to the Edith’s distress, anxiety and her physical resistance.

   ·In 2005 a Hospital in the Home nurse visited the home to access Edith’s central line, as a result of which Edith became so anxious that she ripped out the access needle, causing it to snap leaving remnants in the central line. The remnants of the needle had to be removed under a general anaesthetic.

   ·In or about 2006, whilst a patient at the Z Hospital, Edith picked at her central line until it became unconnected to her infuse-a-port resulting in a backflow of arterial blood flowing out of that port.

THE PROPOSED TREATMENT

1. It is proposed that a laparoscopic partial hysterectomy, involving removal of the uterus but with conservation of the ovaries and the fallopian tubes, be performed by Dr W. Dr W, an obstetrician and gynaecologist who has known and treated Edith since 2008, describes this procedure as ‘a relatively straightforward surgical procedure involving a few days in hospital. [Edith] would only have a few small abdominal incisions which would be difficult to unpick and the likelihood of long term consequences is minimal as this is a well recognised procedure and in the hands of an experienced surgeon has little or no long term morbidity.’

2. In July 2014 the applicants sought an opinion from Dr D, a gynaecologist in private practice, in relation to the management of Edith’s menses and the various options for treatment including the proposed hysterectomy and observed changes to her vulva. Dr D was also requested by the Independent Children’s Lawyer to respond to specific questions addressed to her by the Independent Children’s Lawyer.  Dr D’s evidence with respect to the proposed surgery was that Edith would be in hospital somewhere between 24 and 72 hours unless there was some unexpected pathology found at the time of the surgery. It was her opinion, with respect to possible effects of the proposed treatment, that:

   The only real main potential long term effect can be a slightly increased risk of having problems with a vagina vault prolapse many years hence. There is also a small risk of the development of pelvic adhesions. If [Edith] developed pelvic adhesions in most cases she would not need further surgery unless the adhesions were of a major nature. There is a small risk that she might need an admission and during which she was given intravenous fluids and had nil by mouth until her bowel went back to functioning normally.

WHY THE PROPOSED TREATMENT IS REQUIRED

1. The primary purpose of the proposed procedure in this case is to permanently suppress Edith’s menstrual cycle.

2. Although Edith has now been menstruating for some five years, both her mother and Dr H have said that she has no understanding of what is happening to her and why it keeps occurring. The mother gave evidence about the techniques she had employed to explain menstruation to Edith but that, as both the mother and Dr H said, it was beyond Edith’s level of comprehension. Dr H’s evidence was that Edith had no concept of memory at all and would not remember menstruating from cycle to cycle.

3. The mother’s evidence is that Edith, most likely because of her medical history and the numerous admissions and procedures she has had, associates blood with pain and becomes extremely distressed when she menstruates. As a result of this fear and her reaction to the blood she self-mutilates in an attempt to make the blood stop or go away. The mother described Edith putting her fingers inside her vagina, causing physical damage to herself, and constantly scratching at her vulva. Edith also transfers menstrual blood to other parts of her body. The mother says that Edith recently had a permanent discharge coming from her right ear, which she also picked at, and that there was a cross-transfer between her ear and her vulva. Dr H also gave evidence about Edith being at risk of infection as a result of her sticking her finger in her anus and then in her vagina, which he himself had witnessed her doing on one occasion.  

4. Prior to the commencement of her menses Edith was bowel continent and partially bladder continent. However, since Edith started menstruating she has become both bowel and bladder incontinent and must wear a nappy at all times. The mother gave evidence that Edith was initially incontinent only during her menses and would then regain continence a few days after her period had ceased, but that it gradually took longer and longer to regain continence until there was no distinction between when Edith had her menses and when she did not. The mother’s evidence was that eventually Edith did not even realise when she was wetting herself so she and the father, together with Edith’s school, made the decision to have her wear nappies full-time. The mother described in some detail the attempts that she has made with the guidance of Edith’s medical practitioners and school to address Edith’s incontinence. She explained that Edith likes routine and any attempt to modify her behaviour is based upon establishing a regular pattern and routine, but that that is not possible whilst Edith is menstruating because any attempt to introduce such a routine or pattern of behaviour is interrupted by each menstrual cycle.

5. The fact that Edith is now both bowel and bladder incontinent has significant ramifications for her future prospects. Once Edith turns 18 she will be required to leave her current school. Although Edith will continue to live with her parents, they propose finding an adult placement in an appropriate care facility for Edith however their choices will be governed by whether or not she is continent. The mother’s evidence, which was not the subject of any challenge, was that ‘centres for continent adults have more funding and provide better opportunities for social interaction and outings. There is also the opportunity to participate in paid work with the assistance of carers and aids, such as addressing envelopes and folding pamphlets. The centres for incontinent adults are much more restrictive.’  

6. Dr D, who the applicants consulted in July 2014 in relation to the management of Edith’s periods, has diagnosed Edith as having ‘significant chronic inflammatory changes of her vulva and a difficult form of Candida to treat as well as normal Candida. These vulval changes are very rare in a young woman of [Edith’s] age. They come because of problems of chronic irritation.’  In addition to the problem caused by Edith picking and pulling at her vulva, Dr D also said that Edith being in nappies ‘is not good for vulval tissue as it is intermittently but regularly in contact with both urine and faeces.’  She went on to say that ‘[c]hronic irritation of the vulva may lead to the development of pre cancerous changes and long term cancer.’ Although both Dr H and Dr W said that they could not say that keratosis would not develop into cancer, they both opined that it was unlikely but that it would be prudent to address the problem.

7. Edith has, since December 2013, had a number of seizures shortly before the start of her menstrual cycle. Dr H’s evidence is that there is a strong correlation between these seizures and Edith’s menses whether physiological or as a result of the anxiety caused by her menses. There is also no evidence of any other physiological cause of the seizures, such as a brain tumour, although he did concede that, given Edith’s particular circumstances, it was difficult to investigate the causes. The mother described a number of these seizures in her affidavit material and gave oral evidence of Edith’s most recent seizure, which had occurred on the morning of the weekend prior to the final hearing. On this occasion, the mother found Edith lying on the bathroom floor, conscious but drowsy. Edith on this occasion, and as she had on the other occasions when she has had seizures, was vomiting and had had a bowel motion. The mother said Edith then slept for a further four hours despite having only just woken up, and that Edith’s menstrual cycle commenced that evening.  Although to date, apart from the immediate effects of these seizures, there have been no more serious consequences, there is a risk that Edith may be injured during one of these seizures.

8. Apart from the medical issues, Edith’s menses and the level of anxiety it causes her has a significant impact upon Edith and her general wellbeing both at the time she is menstruating and generally. That level of anxiety is directly related to the other issues both physical and medical that Edith faces and which she and her family must deal with.

ALTERNATIVE TREATMENTS

1. Whilst there are other treatments available, the consensus of opinion of the various medical experts in this case is that they had been tried but were unsuccessful, were contraindicated because of Edith’s particular circumstances, or might not ultimately achieve the intended aim of preventing menstruation.

2. Those alternative procedures or treatments include the following:

   ·The insertion of an IUD into her uterus. Whilst there was some dispute as to whether Edith, who does not tolerate any foreign objects being inside her body, might be able to remove the IUD herself, any IUD would in any event need to be replaced within three to five years even if Edith had not already removed it herself. This, as well as the initial insertion, would need to be performed under general anaesthetic. The other issue with an IUD is that it would not necessarily completely suppress Edith’s menstrual cycle and that patients can continue to have significant spotting or, even in some instances, heavy bleeding. Dr W gave evidence that only 50 per cent of patients do not menstruate at all whilst using an IUD.

   ·The insertion of an Implanon into the subcutaneous tissue of her arm. This would similarly require a general anaesthetic for its insertion and for its replacement every couple of years. According to Dr D, these implants quite commonly cause irritation at the sight of the implant. Given Edith’s intolerance of foreign objects and sensory processing disorder it is considered highly likely that she would scratch it out. Further, given the problems that Edith has with maintaining hygiene, this could lead to infection as has previously occurred. Dr D also deposed that as an Implanon causes suppression of ovarian function it would pre-dispose Edith to osteoporosis and cardiac disease long term. This risk would also be greater in Edith’s case because of her immune deficiency. Dr W also gave evidence that the implant was unreliable in 80 per cent of cases with those patients having intermittent bleeding from time-to-time, and that only in approximately 20 per cent of cases did it cause a patient’s menstruation to cease completely. Dr W also said the effect of the implant could vary from implant to implant.

   ·A Depo-Provera injection administered three monthly by intramuscular injection. In Edith’s, case this would again require a general anaesthetic every three months. Depo-Provera would similarly increase Edith’s risk of both osteoporosis and cardiac disease. It was Dr W’s evidence that there was no guarantee that Depo-Provera would totally suppress Edith’s menstrual cycle and that the bleeding could take a year or longer to stop, assuming it worked at all.

   ·Endometrial Ablation, where the lining of the uterus is burnt off. Although Dr W identified this as another option, he also said that it was not guaranteed to prevent Edith having her menses. It was his evidence that menstruation continues in approximately 20 per cent of cases where patients have undergone this procedure.

DISCUSSION

1. Edith’s treating medical practitioners are united in their view that Edith should have a laparoscopic partial hysterectomy. Her parents agree and seek that the treatment be authorised by this Court. Both Dr H and Dr W gave evidence that they had considered all the other options and that the removal of Edith’s uterus was the preferred option. Dr D’s evidence was consistent with the evidence of Dr H and Dr W.

2. I am satisfied that in all of the circumstances the proposed treatment is in Edith’s best interests. Whilst clearly Edith’s monthly cycles add to the challenges her family face in caring for her, I am satisfied that this application is not motivated by their needs but by their concern for Edith’s welfare. The love the applicant parents have for Edith, their commitment to her care, and the important role she plays in their lives notwithstanding the challenges that that involves is clear from the evidence in this case. By the standard of what most parents must do their task is enormous. Whilst the total and permanent suppression of Edith’s menstrual cycle will hopefully ease their burden, although they do not refer to it as such, it is Edith’s welfare which is the paramount consideration. That being said it is also clearly the case that Edith’s welfare is inextricably linked with the welfare of the applicant parents and the family generally.

3. I am satisfied that the proposed treatment will not only ease the burden it places upon Edith but is likely to be of significant benefit to Edith in terms of both her immediate prognosis as well as her long-term prospects.  

4. The proposed removal of Edith’s uterus and consequent cessation of menstruation will eliminate the anxiety Edith experiences each time she starts menstruating which is, for her, a new and daunting experience on each occasion. I accept the mother’s evidence that Edith is terrified of blood, associating it with pain, and self-mutilates during her menstruation to try and make the blood stop or go away. The cessation of Edith’s menses will eliminate her reason for her self-mutilating and prevent any further damage to her vulva or any other part of her body and reduce the risk of infection she is exposed to as a result of her reaction to the menstrual blood.

5. Whilst there is no guarantee that as a result of the removal of Edith’s uterus, and the fact that she is no longer having a regular period, that Edith will regain her continence, I am satisfied, particularly having regard to the evidence of the mother as to Edith’s need for and response to routine in her life, that Edith will almost certainly remain both bowel and bladder incontinent while she continues to menstruate. This has both long and short-term implications for Edith, particularly having regard to the fact that she is almost 18 and the options available to her once she leaves her current school will depend upon whether she is continent or incontinent. 

6. Whether the seizures she has been having are physiologically related to the commencement of her menses each month or a result of the anxiety she now experiences as a result of her menses, I am satisfied that it is less likely that she will continue to have those seizures if she is not menstruating and that this is likely to reduce the risk to Edith associated with those seizures.  

7. I accept the evidence of Edith’s various treating doctors that the alternative treatments are not suitable in her case. Whilst the proposed treatment is invasive, it is moderately so and I am satisfied that in the long term it is likely to be less invasive than some of the other alternatives which will require Edith to undergo not just one but many more general anaesthetics.

8. The proposed procedure is permanent and irreversible in the sense that it will both end her menstrual cycle but will also preclude any possibility of Edith bearing a child. Whilst Edith’s sterilisation is the ultimate consequence of the procedure, it is not the purpose. The mother deposed to her view that there was no realistic prospect of Edith either forming a romantic relationship or mothering children. I accept the mother’s evidence which, together with the evidence of Edith’s treating medical practitioners and the nurse who has cared for her over a period of 10 years, and in particular the evidence with respect to Edith’s sensory processing disorder, leads me to conclude that Edith would have a very limited capacity to form a relationship which might lead to her wanting to bear a child, that she would not have any concept of what would be involved in having a child, and that she would not have the capacity to care for a child.  

9. In all of the circumstances I am satisfied that, although there are risks associated with the proposed treatment, those risks are outweighed in this case by the physical and psychological benefits to Edith and what is likely to be a significant improvement in the quality of her life both in the short and long-term. I am satisfied that the proposed treatment is the most appropriate option considering all of the alternative treatments and is the most likely to promote Edith’s physical and emotional wellbeing. In all of the circumstances, having found that it is in Edith’s best interests to undergo the proposed laparoscopic partial hysterectomy, I propose to accede to the application.

I certify that the preceding fifty-one (51) paragraphs are a true copy of the reasons for judgment of the Honourable Justice Macmillan delivered 23 October 2014.

Associate: 

Date:  23 October 2014