Re: Sean and Russell (Special Medical Procedures)
[2010] FamCA 948
•26 October 2010
FAMILY COURT OF AUSTRALIA
| RE: SEAN AND RUSSELL (SPECIAL MEDICAL PROCEDURES) | [2010] FamCA 948 |
| FAMILY LAW – SPECIAL MEDICAL PROCEDURE – Two similar but separate cases – Denys-Drash Syndrome – Gonadectomy for an 18 month old and 3 ½ year old – What is a “special medical procedure” – Parenting orders and medical procedures |
| Evidence Act 1995 (Cth) Family Law Act 1975 (Cth) Family Law Reform Act 1995 (Cth) Family Law Amendment (Shared Parental Responsibility) Act 2006 (Cth) Family Law Rules 2004 (Cth) |
| Gillick v West Norfolk Area Health Authority [1986] AC 112 Minister for Immigration and Multicultural and Indigenous Affairs v B and Another (2004) 219 CLR 365 P v P (1994) 181 CLR 583 R v Commonwealth Court of Conciliation and Arbitration; Ex parte Ozone Theatres (Aust) Ltd (1949) 78 CLR 389 Re A (1993) FLC ¶92-402 Re Alex: Hormonal Treatment for Gender Dysphoria Disorder (2004) FLC 93-175; [2004] FamCA 297 Re Alex (2009) 42 FamLR 645 Re GWW and CMW (1997) FLC ¶92-748 Re Jane (1989) FLC ¶92-007 Re Marion (No. 2) (1994) FLC ¶92-448) Re Michael (No 2) (1994) FLC ¶92-486 Re Sally (Special Medical Procedure) [2010] FamCA 237 Secretary, Department of Health and Community Services v JWB & SMB (“Marion’s Case”) [1992] FLC92-293 State of Queensland v B [2008] QSC 231 State of Queensland v Nolan [2002] 1 Qd R 454 |
| APPLICANT: | A State Health Authority |
| RESPONDENTS IN FILE NO …: | Sean’s Parents |
| RESPONDENTS IN FILE NO …: | Russell’s Parents |
| FRIEND OF THE COURT: | Department of Communities |
| FILE NUMBERS: By Court Order File Numbers are suppressed |
| DATE DELIVERED: | 26 October 2010 |
| JUDGMENT OF: | Murphy J |
| HEARING DATE: | 23 August 2010 |
REPRESENTATION
By Court Order the names of Solicitors and Counsel have been suppressed
Orders
A STATE HEALTH AUTHORITY and RUSSELL’S PARENTS File No. …
IT IS DECLARED that RUSSELL’S MOTHER and RUSSELL’S FATHER, the parents of RUSSELL born … 2009, are permitted to authorise and give consent on behalf of the said child to:
a.the proposed surgery for the said child, namely the bi-lateral removal of his gonads (“gonadectomy”);
b.such further necessary consequential procedures to give effective treatment for the condition Denys-Drash Syndrome suffered by him, including but not limited to testosterone treatment.
The signed written authority and consent of RUSSELL’S MOTHER and RUSSELL’S FATHER shall be sufficient so as to authorise and give consent to all scientists, doctors and other medical practitioners to carry out the said surgery and the said further treatment, until such time as the said child shall have reached such sufficient age and maturity such that he is himself competent to authorise and consent to any and all such treatment.
For the purposes of the publication of the judgment in this matter as authorised by section 121(9) of the Act:
a.this matter shall be known by, and referred to as, “Re Sean and Russell (Special Medical Procedures)”;
b.the names of each and every doctor or scientist referred to within the judgment shall be anonymised;
c.the names of the child’s parents shall be anonymised and this child shall be referred to as “Russell”;
d.all references to any geographic locality shall be deleted; and
e.all references to the file number, registry information and details of any representatives be suppressed.
IT IS NOTED THAT
Details of the nature of the proposed surgery and the proposed further treatment for the child are contained in the affidavits of Dr Z and Professor H filed in these proceedings.
Orders
A STATE HEALTH AUTHORITY and SEAN’S PARENTS File No. …
IT IS DECLARED that SEAN’S MOTHER and SEAN’S FATHER, the parents of SEAN born …, 2006, are permitted to authorise and give consent on behalf of the said child to:
a.the proposed surgery for the said child, namely the bi-lateral removal of his gonads (“gonadectomy”);
b.such further necessary consequential procedures to give effective treatment for the condition Denys-Drash Syndrome suffered by him, including but not limited to testosterone treatment.
The signed written authority and consent of SEAN’S MOTHER and SEAN’S FATHER shall be sufficient so as to authorise and give consent to all scientists, doctors and other medical practitioners to carry out the said surgery and the said further treatment, until such time as the said child shall have reached such sufficient age and maturity such that he is himself competent to authorise and consent to any and all such treatment.
For the purposes of the publication of the judgment in this matter as authorised by section 121(9) of the Act:
a.this matter shall be known by, and referred to as, “Re Sean and Russell (Special Medical Procedures)”;
b.the names of each and every doctor or scientist referred to within the judgment shall be anonymised;
c.the names of the child’s parents shall be anonymised and this child shall be referred to as “Sean”;
d.all references to any geographic locality shall be deleted; and
e.all references to the file number, registry information and details of any representatives be suppressed.
IT IS NOTED THAT
Details of the nature of the proposed surgery and the proposed further treatment for the child are contained in the affidavits of Drs Z and L filed in these proceedings.
IT IS FURTHER NOTED that publication of this judgment under the pseudonym Re Sean and Russell (Special Medical Procedures) is approved pursuant to s 121(9)(g) of the Family Law Act 1975 (Cth)
| FAMILY COURT OF AUSTRALIA |
FILE NUMBERS: By Court order File Numbers are suppressed
| A STATE HEALTH AUTHORITY |
Applicant
And
| RUSSELL’S PARENTS |
Respondents
And
| SEAN’S PARENTS |
Respondents
REASONS FOR JUDGMENT
Russell, is barely 18 months old, having been born in 2009. Sean is a toddler, aged about 3½ years old, born in 2006. Each suffers from a very rare medical condition.
Specialist medical opinion says that each should undergo a gonadectomy. That operation will render each child infertile.
These applications seek orders that the respective parents of each child be permitted to authorise those operations and any attendant treatment.
The Applications
The application in respect of each child is brought not by one or both parents, but by a health authority in the name of the State ….
The mooted operations will, I assume, be carried out in hospitals owned and run by the authority. The doctors who perform the operations and provide attendant treatment and medical advice are employed, I assume, by the authority and will provide treatment and advice within its hospital.
The evidence reveals that each of Russell’s and Sean’s parents are loving, caring, thoughtful parents. They are each and all motivated to act in accordance with what they consider to be their respective child’s best interests.
The evidence also reveals that each and all of the parents sought, listened to, and in my judgment carefully considered, specialist medical opinion and advice relating to their child’s respective conditions and the ramifications of it for the child. Some specialists treat both children.
The parents of each child join with the health authority in seeking the orders in its application.
That application seeks the order earlier referred to in the context of a declaration that the proposed surgery is in each respective child’s best interests. The application in respect of each child also seeks orders that:-
… such further or other necessary and consequential procedures to give effect to the treatment of [each respective child] for his condition of Denys-Drash Syndrome, including testosterone treatment as outlined in [the relevant medical affidavits] may be authorised by either of his parents …
All scientists, doctors and other medical practitioners be, and are hereby authorised, to conduct such operations and procedures indicated in this [this and the previous sub-paragraph] upon the written authority of either of the said [respective parents].
Given the high degree of similarity in the two cases and the issues which each exposes, I have determined (with the consent of all parties in each case), to deal with the two applications in this one set of Reasons. The parents are unrelated, but have made contact via the internet and apparently share information and give each other support.
I emphasise that I am, of course, acutely aware that there are two decisions to be made – if, indeed, it is appropriate for the court to make a decision at all in either case. Each decision must ultimately reflect what is in the best interests of each child by reference to each child’s individual circumstances and a specific assessment must be made of their individual best interests.
The Condition and its Consequences
Each of Russell and Sean suffer from a very rare condition called Denys-Drash Syndrome. It is thought that the two children are the only two people in Australia who suffer from it. It is a condition which arises because of a mutation of the WD1 gene.
The specialist medical evidence before the court reveals that children with Denys-Drash Syndrome typically develop nephrotic syndrome at an early age, which progresses to complete kidney failure, generally between the ages of 2 and 4 years. In Sean’s case, that has already occurred; in Russell’s it has not. There is, it appears, no doubt that total kidney failure will occur at some stage and, almost inevitably, before the age of 4.
The management of that kidney failure involves dialysis and, ultimately, transplantation. The timing of any surgery is dependent upon the clinical course of the disease. A very common feature of the condition is the growth of tumours on the kidney, which can be unilateral or bilateral, called Wilms Tumours. Denys-Drash Syndrome also has associated with it the development of ambiguous genitalia.
The key features, then, of Denys-Drash Syndrome have been described in the medical evidence before the Court as being nephropathy (kidney disease); Wilms tumours and, particularly relevant for present purposes, male pseudohemaphroditism.
Although Russell has ambiguous genitalia, he is genetically male. The evidence reveals that he has a hypospadias which requires surgical repair and has intra-abdominal testes (meaning that they are located in the abdominal space, rather than in the scrotum). In his case, endocrine testing reveals that his testes do not produce a normal amount of testosterone and Russell is unlikely to ever be able to reproduce.
Sean is, of course, older than Russell. The catalyst for Sean’s diagnosis appears to have been acute renal failure in October 2007, subsequent upon him undergoing the removal of an oral pyogenic granuloma (a skin growth). His kidney condition was thereafter treated.
Chromosomal testing indicated that Sean, too, is a genetic male. He, too, has a history of bilaterally impalpable testes. His scrotum and penis are normal but his testes are impalpable. The diagnosis of Denys-Drash Syndrome was suggested on 19 October 2007 and ultimately, the mutation in the WT1 gene was identified after genetic testing.
Similarly to Russell, the syndrome is said to be associated with “a high risk of bilateral Wilm’s tumours (cancer of the kidneys); a risk of germ cell tumours (i.e. cancer) of the testes; and kidney problems”.
Genetic males with abnormal and intra-abdominal gonads are at highest risk of malignancy. Each of Russell and Sean fall into that category. Gonadectomy to remove the testes is recommended at an early age.
The essential proposition in respect of each child is that the development of the cancers, considered highly probable by reason of the syndrome, can be prevented by the surgical removal of both kidneys and both testes.
Obviously, the removal of both testes will render each of Russell and Sean infertile. However, the consensus of medical opinion before the Court is that, by reason of the manifestations of the syndrome itself, each child is “almost certainly” likely to be infertile even without the proposed gonadectomy.
Special Medical Procedures: Parental Responsibility and Jurisdiction
Marion’s Case and its Consequences
Prior to 1995, the Act referred to the duties, powers and responsibilities of parents as an incident of “guardianship” rather than as an incident of “parental responsibility”. The plurality in the High Court in Secretary, Department of Health and Community Services v JWB and SMB (Marion’s case) (1992) 175 CLR 218 referred to the then s 63E (at 235):
… subject to the order of a competent court, each parent of a child under 18 years is a guardian of the child s 63F(1) of the Family Law Act. Section 63E(1) and (2) of the Family Law Act provides:
"(1)A person who is the guardian of a child under this Act has responsibility for the long-term welfare of the child and has, in relation to the child, all the powers, rights and duties that are, apart from this Act, vested by law or custom in the guardian of a child, other than:
(a) the right to have the daily care and control of the child; and
(b) the right and responsibility to make decisions concerning the daily care and control of the child.
(2)A person who has or is granted custody of a child under this Act has:
(a) the right to have the daily care and control of the child; and
(b) the right and responsibility to make decisions concerning the daily care and control of the child."
The plurality went on to hold in that case (ibid):
Section 63E(1) operates to identify the guardian, as against the world, as the person with the responsibility defined; it delineates the rights and duties of the guardian and the custodian of a child if they are different persons; and, possibly, the sub-section functions to impose the relevant duty on the person who is the guardian. It also vests in the guardian rights and duties which are, ordinarily, the incidents of parenthood at common law and impliedly preserves any specific rights and duties conferred by the general law and legislation, other than the Family Law Act, on a guardian. This preservation is achieved by conferring on the guardian "all the powers, rights and duties that are, apart from this Act, vested by law or custom in the guardian".
But, in respect of parents (or guardians) giving authority and consent to medical treatment, the court also identified restrictions on the “rights and duties” of the guardian.
First, children have rights, including, in specific circumstances, the right to determine for themselves whether a medical procedure can be carried out.
The plurality in Marion’s case, at 237, quote Lord Scarman in Gillick v West Norfolk Area Health Authority [1986] AC 112, at 183-184 as follows:
Parental rights … do not wholly disappear until the age of majority … But the common law has never treated such rights as sovereign or beyond review and control. Nor has our law ever treated the child as other than a person with capacities and rights recognised by law. The principle of the law … is that parental rights are derived from parental duty and exist only so long as they are needed for the protection of the person and property of the child.
The plurality go on to say, also at 237, and again quoting Lord Scarman with approval:
A minor is, according to this principle, capable of giving informed consent when he or she “achieves a sufficient understanding and intelligence to enable him or her to understand fully what is proposed”.
The High Court ultimately held that this approach “… should be followed in this country as part of the common law”.
Here, clearly enough, neither Russell nor Sean is “Gillick competent”.
But, Marion’s Case is also authority for a broader restriction on the ordinary exercise of parental rights and duties in so far as they apply to particular types of medical procedures.
The plurality (at 249) held that “… the decision to sterilise a child [is] a special case requiring authorisation from a source other than the child's parents”, going on to hold:
There are, in our opinion, features of a sterilisation procedure or, more accurately, factors involved in a decision to authorise sterilisation of another person, which indicate that, in order to ensure the best protection of a child, such decision should not come within the ordinary scope of parental power to consent to medical treatment. Court authorisation is necessary and is, in essence, a procedural safeguard.
In other words, parental powers to authorise that particular form of procedure, even in respect of the “non-Gillick competent”, have their limits; procedures of this type cannot be authorised by parents even should they wish to, or purport to.
The headnote to Marion’s Case records a significant ramification of that principle:
(2) A medical practitioner who performs a sterilization procedure in reliance upon a valid order of the Family Court authorizing that procedure will not be guilty of an unlawful assault within s 188 [of the NT Criminal Code] or of unlawfully causing grievous harm within s 181 of the Code, because the operation will be an authorised Act for the purposes of s 26.
Of course, the corollary is also true: absence of authorisation might (subject, of course, to the specific provisions of relevant criminal law) make the carrying out of the procedure unlawful, and, potentially, the subject of criminal sanction. Per force of the same reasoning, an unauthorised procedure might also result in civil liability.
It might immediately be observed, then, that doctors performing the relevant procedures (and the hospitals within which the procedures are conducted or who employ or licence the doctors) have a clear interest in court-ordered authorisation of relevant procedures.
The previous Chief Justice (referring to an earlier decision by his Honour in Re Marion (No. 2) (1994) FLC ¶92-448) outlined in Re Alex: Hormonal Treatment for Gender Dysphoria Disorder (2004) FLC 93-175; [2004] FamCA 297, “a number of particular matters to be considered when the court is faced with a special medical procedure”.
His Honour went on to say (Re Alex at 150) that “there are three factual issues which determine the Court’s capacity to exercise the welfare jurisdiction granted by s 67ZC of the Act”. Having first referred to whether a person other than a parent has guardianship of the child, his Honour went on:
However, two further issues arise from the High Court of Australia’s decision in … (Marion’s case) which is the relevantly binding Australian authority:
· whether the child or young person is himself competent to consent; and
· whether the subject matter of the application is a “special medical procedure” to which a parent or guardian cannot consent.
The reference by his Honour to the court’s “capacity” to exercise “the welfare jurisdiction”, is a reference to two other important aspects of the decision in Marion’s Case. Having decided that the procedure there was of a type (described by his Honour as a “special medical procedure”) which required court authorisation, the High Court went on to hold that this court had jurisdiction to give that authorisation.
In the current context, it is important to observe that, in Marion, it was the child’s parents who had applied to this court for an order authorising a hysterectomy and ovariectomy for their intellectually disabled daughter and for a declaration that it was lawful for them to consent to the performance of those procedures.
At that time the court was empowered to make orders that might be seen as akin to the defined “parenting orders” in the current Act. Section 64 of the then Act gave the court power “in proceedings with respect to the custody, guardianship or welfare of, or access to, a child of a marriage … subject to paragraphs (a), (b), (ba) and (bb), [to] make such order in respect of those matters as it thinks proper…”
It might be thought that the court could make an order, pursuant to those powers (for example, as pertaining to “guardianship”) so as to permit parents to seek an order permitting them to authorise the procedure, or to seek a declaration in that respect. In that respect, the powers outlined in s 63E quoted above, might be seen as very broad.
However, in respect of those specific statutory powers given to guardians by the then s 63E, the High Court said:
…in our view the Family Court has no power under s 63E(1) of the Act to enlarge the powers of a guardian under s 63E(1) so that he or she can consent to the sterilization of a child.
An order could not be sought by a parent pursuant to the then s 64; the jurisdiction and power for parents to seek orders of that type needed to be found elsewhere. The High Court held:
What was achieved by the amendments [to the Act] of 1983 and was not rescinded by the change to the Act in 1987 was a vesting in the Family Court of the substance of the parens patriae jurisdiction, of which one aspect is the wardship jurisdiction … the fact that the Family Court ‘may not have the power to make a child a ward of the court does not … prevent it exercising the general parens patriae power with respect to children.
The court went on to hold that, in order to authorise procedures of a type which parents or other guardians cannot themselves authorise, “the welfare jurisdiction conferred upon the Family Court is similar to the parens patriae jurisdiction” (at 258).
Significantly, the court went on to say (at 259):
So the courts can exercise jurisdiction in cases where parents have no power to consent to an operation, as well as cases in which they have the power.
It seems to me, then, that the position after Marion’s Case was that an appropriate party could seek orders in respect of (relevantly) guardianship by reference to the jurisdiction and power of this court to make orders in respect of that matter but, if the matter related to a medical procedure involving sterilization of a non-Gillick competent child, jurisdiction was found outside of those bounds and within the “welfare jurisdiction” of the court which was similar to the parens patriae jurisdiction of the courts of common law.
As will be seen, in my view that distinction has been maintained in the subsequent amendment to the Act which introduced s 67ZC.
Legislative Amendment After Marion’s Case
Subsequent to the decision in Marion’s Case, the Act has been amended significantly by Family Law Reform Act (1995) (Cth) and, later, by the Family Law Amendment (Shared Parental Responsibility) Act 2006 (Cth).
A number of questions arise:
· Do the subsequent legislative amendments and the current Act alter the requirement for some medical procedures to be authorised by a court;
· If so, does this court have jurisdiction to grant any such application and does that jurisdiction have any relevant limits; and
· Where is that jurisdiction to be found.
In 1995, section 67ZC was inserted into the Act. It provides:
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 to 60CG deal with how a court determines a child's best interests.
As pointed out by Nicholson CJ in Re Alex: Hormonal Treatment for Gender Dysphoria Disorder (2004) FLC 93-175;[2004] FamCA 297:
146. The accompanying Explanatory Memorandum stated that the new provision:
“… provides the court with jurisdiction relating to the welfare of children in addition to the jurisdiction that the court has under Part VII in relation to children. This jurisdiction is the parens patriae jurisdiction explained by the High Court in …[Marion’s Case].
Also added to the Act as a result of the 1995 amendments was a definition of “parental responsibility”, which, in turn, has a relationship with “parenting orders”. The Act provides:
61B In this Part, parental responsibility in relation to a child means all the duties, powers, responsibilities and authority which, by law, parents have in relation to children.
61C Each parent has parental responsibility (subject to court orders)
(1) Each of the parents of a child who is not 18 has parental responsibility for a child.
Note 1: This section states the legal position that prevails in relation to parental responsibility to the extent to which it is not displaced by a parenting order made by the court. See subsection (3) of this section and subsection 61D(2) for the effect of a parenting order.
Note 2: This section does not establish a presumption to be applied by the court when making a parenting order. See section 61DA for the presumption that the court does apply when making a parenting order.
Note 3: Under section 63C, the parents of a child may make a parenting plan that the court does apply when making a parenting order.
(2) Subsection (1) has effect despite any changes in the nature of the relationships of the child’s parents. It is not affected, for example, by the parents becoming separated or by either or both of them marrying or re-marrying.
(3) Subsection (1) has effect subject to any order of a court for the time being in force (whether or not made under this Act and whether made before or after the commencement of this section).
Note: Section 111CS may affect the attribution of parental responsibility for a child.
61D Parenting orders and parental responsibility
(1) A parenting order confers parental responsibility for a child on a person, but only to the extent to which the order confers on the person duties, powers, responsibilities or authority in relation to a child.
(2) A parenting order in relation to a child does not take away or diminish any aspect of parental responsibility of any person for the child except to the extent (if any):
(a) expressly provided for in the order;
(b) necessary to give effect to the order.
Is Court Authorisation Still Required?
The legislature, presumed to know of the provisions of the Act and the Act’s genesis, and the law as laid down by the High Court, made no specific reference to applications of the type under discussion when providing the court with the specific powers to make parenting orders enumerated in the 1995 amending Act at the same time as introducing s 67ZC.
Section 67ZC was left unamended by the 2006 amending Act. The section continues to refer to jurisdiction “additional to” the jurisdiction under Part VII. No part of the Explanatory Memorandum accompanying the 2006 amending Act deals with the jurisdiction referred to in either Marion’s Case or the later decision of the High Court in Minister for Immigration and Multicultural an Indigenous Affairs v B (2004) 219 CLR 365 (“MIMIA v B”). Moreover, no amendment is made to s 67ZC despite at least one section of the amended Act (s 65DAC) dealing specifically with parental decision making.
The indicia of guardianship and its limits discussed in the former case finds significant parallels in the indicia (or, the “duties, powers, responsibilities and authority”) attached to “parental responsibility”.
The matters which require court application to “ensure the best protection” of the child identified in Marion’s Case (see pp 250 -254) are no less applicable now than they were in the 1992 circumstances in which that case was decided.
In my view, “parental responsibility” has the same limits as guardianship discussed in Marion’s Case. The legislature did not seek to change that position subsequent to the decision in Marion’s Case.
Accordingly, in my view, the words of the High Court in Marion’s Case remain the law: “… the decision to sterilise a child [remains] a special case requiring authorisation from a source other than the child's parents” and no provision of the Act gives the Court “the power to enlarge the powers” of those with parental responsibility for children.
What Medical Procedures Require Authorisation?
It will be recalled that the principles emerging from the High Court in Marion’s Case refer to “sterilization”. The former Chief Justice in Re Alex, above referred to “whether the subject matter of the application is a ‘special medical procedure’ to which a parent or guardian cannot consent” as being one of the three matters which “determine the court’s capacity to exercise the welfare jurisdiction granted by s 67ZC”.
In the latter case, Nicholson CJ said at pars 175-178 [emphasised passages are in the original]:
While it is the most common type of special medical procedure application, the requirement of court authorisation has not been limited to sterilisation cases. The Family Court of Australia has been called upon to decide applications concerning:
·the surgical gender reassignment of a 14-year-old with a congenital disorder – Re A (1993) FLC ¶92-402;
·the performance of cardiac surgery on an 11-year-old boy where parental consent was refused – Re Michael (1994) FLC ¶92-471; Re Michael (No 2) (1994) FLC ¶92-486; and
·the harvest of bone marrow blood cells from a physically and intellectually healthy 10-year-old boy for transplant to the child’s aunt who was suffering from leukaemia – Re GWW and CMW. (1997) FLC ¶92-748.
In Re GWW and CMW (supra), Hannon J was faced with a challenge to the Court’s jurisdiction and made the following comments at 84,108:
“…it is necessary to consider whether this is a special case outside the scope of a parent's power to consent to on behalf of his or her child (Re Marion FLC at 79,171-79,172; CLR at 232). In Re Marion the majority stated that there are features involved in a decision to authorise sterilisation which indicate that in order to ensure the best protection of the interests of a child, such a decision should not come within the ordinary scope of parental power to consent to medical treatment. ''Court authorisation is necessary, and is, in essence a procedural safeguard''. The court went on to state that court authorisation is required firstly because of the significant risk of making the wrong decision and secondly because the consequences of a wrong decision are particularly grave. Their Honours constituting the majority of the court, noted in some detail the factors which may contribute to the risk of a wrong decision being made and the gravity of the consequences if that were to occur.
Although their Honours were there dealing with a case involving sterilisation which they referred to as being ''invasive, irreversible and major surgery'', there are passages in the judgment which indicate that it is not only sterilisation which constitutes a special case and therefore is outside the ordinary scope of parental power to consent. The majority cited with approval a passage from the judgment of Nicholson CJ in Re Jane (1989) FLC ¶92-007 where at page 77,256 his Honour said:
“The consequences of a finding that the Court's consent is unnecessary are far reaching both for parents and for children. For example, such a principle might be used to justify parental consent to the surgical removal of a girl's clitoris for religious or quasi-cultural reasons, or the sterilisation of a perfectly healthy girl for misguided, albeit sincere, reasons. Other possibilities might include parental consent to the donation of healthy organs such as a kidney from one sibling to another."
Such procedures involve the invasive, irreversible and major surgery to which the court adverted in Re Marion whereas the procedure of harvesting of stem cells sought to be authorised in the present application, although invasive is not irreversible in that the stems regenerate and the blood is reinfused into the donor. ” (emphasis added)
I find the passages of his Honour’s comments as to principle which I have underlined to be of assistance in the present matter.
Like Hannon J, I do not read their Honours in Marion’s case to be confining the reasons for authorisation to surgical interventions only. It was a factual element of the case - the sterilisation method proposed for Marion. It is hard to imagine that the principled considerations that I have emphasised in par 176 would be inapplicable if authorisation had been sought for an alternative intervention of similarly irreversible effect for the same purpose, for example the use of radiation or pharmaceuticals.
It is clear that, even in identifying sterilization as a case where authorisation is required, the High Court was at pains to point out that it was not sterilization per se that required authorisation:
… it is necessary to make it clear that, in speaking of sterilization in this context, we are not referring to sterilization which is a by-product of surgery appropriately carried out to treat some malfunction or disease. We hesitate to use the expressions “therapeutic” or “non-therapeutic”, because of their uncertainty. But it is necessary to make the distinction, however unclear the line may be. [emphasis added]
A similar distinction appears in this court’s Rules (see Rules 4.08ff). Within their dictionary, the Rules define a “Medical Procedure Application”:
Medical Procedure Application means an Initiating Application (Family Law) seeking an order authorising a major medical procedure for a child that is not for the purpose of treating a bodily malfunction or disease.
Example
An example of a major medical procedure for a child that is not for the purpose of treating a bodily malfunction or disease is a procedure for sterilising or removing the child’s reproductive organs.
Thus, in my view, both principle and the Rules confine those cases in which court authorisation is required to those of a type analogous to those in Marion’s Case, which call for what the High Court has subsequently described in MIMIA v B as “exceptional orders of the type traditionally made by courts exercising judicial power”.
Beyond those broad descriptions, it is not possible, nor, in my view, in any event desirable, to further define or list those procedures, treatments or the like which require court authorisation.
Two Components of Jurisdiction?
While the law, in my view, continues to require procedures of a certain type to be authorised by this court, applications may nevertheless be made for orders in respect of which authorisation is not required. That is, applications for “parenting orders” may embrace orders relating to medical procedures which fall within the scope of parental responsibility (or, to use the pre-2006 expression used by the High Court) “parental powers”.
It was recognised in Marion’s Case that there is an “unclear dividing line” between cases which must be authorised by a court and those which may not. It is by no means fanciful that parents may seek to have the court give approval (or disapproval) to a decision which falls within the limits of their parental responsibility but over which they have agonised and may be ambivalent.
Equally, at or near this “unclear dividing line” legitimate doubt might surround who may authorise a procedure; doctors can legitimately claim to need certainty when the consequences of proceeding in the absence of proper authority are potentially very severe.
Furthermore, if the jurisdiction of a court is properly invoked, and the proceedings are not for an ulterior or improper purpose, then, as a general principle, “[i]f the jurisdiction of a court is invoked it has a duty to exercise it”. R v Commonwealth Court of Conciliation and Arbitration; Ex parte Ozone Theatres (Aust) Ltd (1949) 78 CLR 389 (as per Halsbury’s Laws of Australia).
It will be recalled that the High Court in Marion’s Case, drew this distinction: “the courts can exercise jurisdiction in cases where parents have no power to consent to an operation, as well as cases in which they have the power”. In my view, the Act specifically recognises that very distinction.
Section 69H provides the court with jurisdiction “in relation to matters arising under [Part VII].” That Part includes the power to make “parenting orders” (s 64B). Among those matters that can be dealt with by such an order is “any other aspect of parental responsibility for a child”. Section 67ZC makes it plain, in terms, that the jurisdiction there given to the court is “in addition to the jurisdiction that a court has under [Part VII]…”.
Subsequent to both the legislative changes earlier referred to and Marion’s Case, the High Court has had occasion to examine this court’s “welfare jurisdiction”, albeit in a context entirely different from the present (children in immigration detention), in MIMIA v B. In respect of that jurisdiction, Gummow, Hayne and Heydon JJ concluded:
51. By necessary implication, the parents of a child may seek an order under s 67ZC whether the operation of that section is confined by s 69ZH(2) and (3) or whether it has an operation independently of those sub-sections. The right to seek that order arises from various provisions in Pt VII, but particularly from ss 60B, 61B and 61C. Section 60B(1) declares that the object of Pt VII:
‘is to ensure that children receive adequate and proper parenting to help them achieve their full potential, and to ensure that parents fulfil their duties, and meet their responsibilities, concerning the care, welfare and development of their children.’
Section 61C(1) declares that ‘[e]ach of the parents of a child who is not 18 has parental responsibility for the child.’ Section 61B defines this parental responsibility in Pt VII to mean ‘all the duties, powers, responsibilities and authority which, by law, parents have in relation to children.’ The provisions of these three sections provide ample support for an application by a parent for an order under s 67ZC, whether the source of the jurisdiction is Div 12 generally or s 69H in particular.
52. By necessary implication, the Family Court may also make an order under s 67ZC that is binding on a parent. Under that section it may also make orders such as those made in Marion's Case or those analogous to orders traditionally made by courts exercising the parens patriae jurisdiction. Nothing in that section or in the rest of Pt VII, however, suggests that the Family Court has jurisdiction to make orders binding on third parties whenever it would advance the welfare of a child to do so. Nothing in s 67ZC, or in Pt VII generally, imposes - expressly or inferentially - any duty or liability on third parties to act in the best interests of or to advance the welfare of a child. Except where Pt VII expressly imposes obligations on third parties - for example, ss 65M, 65N and 65P - that Part is concerned with the relationship between parents and children and parents’ duties in respect of their children. …
That decision has been subsequently considered in this court - Re Brodie (Special Medical Procedure: Jurisdiction) [2007] FamCA 776 per Carter J; Re: Alex (2009) 42 FamLR 645 per Bryant CJ). In the latter case, the Chief Justice said:
Parental responsibility is a ‘matter’ concerning the welfare of a child under section 76(ii) of the Constitution and it provides a sufficient basis upon which to make orders pursuant to section 67ZC (Minister for Immigration & Multicultural & Indigenous Affairs and B (No. 3) (supra); Re: Brodie (special medical procedure: jurisdiction) (supra); Re: Inaya (2007) 213 FLR 278 and Re: Baby A [2008] FamCA 417).
As the High Court makes clear in MIMIA v B, and particularly, for example in the passages quoted above, the jurisdiction has its limits, particularly when orders purport to seek relief against third parties. Equally, the court there specifically recognised the jurisdiction of this court to make orders of the type discussed in Marion’s Case.
In summary, then, in my view the legislation and principle dictate that:
·Parents (or guardians) do not have, as an incident of their parental responsibilities, the power to authorise or give consent on behalf of their non-Gillick competent children to medical procedures or treatment of a type analogous to that in Marion’s Case;
·For children (or others) who are not “Gillick competent”, it remains the law that court authorisation is required in respect of medical procedures or treatment that can be properly so categorised;
·This court has jurisdiction to hear such an application and the jurisdiction is to be found in s 67ZC;
·The court does not have jurisdiction or power to make parenting orders of that type because it cannot make an order in respect of “any aspect of parental responsibility” that has the effect of enlarging parental responsibilities beyond those which parents, by law, have;
·For children, or others who are not “Gillick competent”, medical procedures or treatment not analogous to that in Marion’s Case – even, it is to be noted, those involving serious and irreversible consequences including sterilisation – can, and in most cases should, be authorised by parents (or guardians) as part of their “parental responsibilities”;
·Nevertheless, this court has jurisdiction (found in Part VII) and power (also found in Part VII) to make “parenting orders” in respect of any such issues, because they deal with “any other aspect of parental responsibility” and do not seek to enlarge powers which those with parental responsibility otherwise have by law;
·The power to make parenting orders of that type includes the power to make orders akin to declarations, including where no inter-parties dispute exists between parents or guardians.
Locus Standii
Section 65C governs who may apply for a “parenting order”. In respect of applications relying upon the court’s jurisdiction pursuant to s 67ZC, section 69C(2) provides:
(2)Any other kind of proceedings under this Act in relation to a child may, unless a contrary intention appears, be instituted by:
(a)either or both of the child’s parents; or
(b)the child; or
(c)a grandparent of the child; or
(d)any other person concerned with the care, welfare or development of the child.
Paragraph (d) has an equivalent in s 65C. The Act’s provisions are mirrored in the Rules in respect of applications of this type – see r. 4.08.
The question of standing in a case of this type was considered by the Full Court in Re Michael (1994) FLC 92-471. There, though, the facts were quite different; the applicant was the Public Advocate for the State of Victoria and was the child’s guardian. The judgment centred on the powers given to the public advocate under the Guardianship and Administration Act 1986 (Vic).
Relevantly, the Court said that counsel did not seek to rely upon any additional standing which the Public Advocate might have as a private individual independent of the State legislation and that “accordingly, [the] decision is confined to whether or not such statutory authority exists”.
In Re Sally (Special Medical Procedure) [2010] FamCA 237, a case I decided earlier this year, the applicant was also a third party. There, argument was advanced on its standing and I was referred to a number of authorities said to be analogous. I there said:
27. … [counsel for the authority] refers to the decision of the Supreme Court of Queensland in the State of Queensland v B [2008] QSC 231. There Wilson J, referred to, and agreed with, an earlier decision of Chesterman J in the State of Queensland v Nolan [2002] 1 Qd R 454. Each was referenced to section 286 of the Criminal Code (Qld) which provides, relevantly, that “a person who has care of a child” includes a number of particular people there specified.
28. The court found that the Code definition was capable of extending to a hospital and doctors who have undertaken the care of a child (in a context relevant to those Supreme Court decisions). [Counsel for the authority] argues that those decisions give weight to the applicant being a person “concerned with the care, welfare or development of the child” within the meaning of section 69C(2)(d) of the Act.
29. [Counsel for the State Department], in written submissions, submits that:
The operation will be performed in premises operated by, and presumably by doctors and health professionals who are under the control of, and/or for whom, the applicant will be legally responsible. Previous applications of this type have been made by health bodies and the standing of such applicants does not appear to be doubted.
30. … I am content to proceed on the assumption which, in any event, I consider to be correct, that the applicant is a person “concerned with the care, welfare or development of the child” the subject of these proceedings and to hold, accordingly, that it has standing to seek the orders which it does.
I would add to the matters there referred to that I consider the Act evidences a clear intention that a wide category of people should be able to apply to this court where the interests of children are concerned and where it is established that the orders sought are within jurisdiction and power. For example, both the Act and the Rules reflect that position in respect of this specific type of application.
I find that the applicant has standing to pursue these applications.
A “Narrow Band of Cases”
It should not be thought that a finding that this court has jurisdiction and power to deal with applications of this type permits of applications unrestrained by other principles or considerations.
Where a decision falls properly within the ambit of parental responsibility, the authorisation or consent to a procedure is a parental decision. In saying that, I do not fail to recognise that the process of decision-making (likely, in many cases to involve a series of separate decisions) is, of course, exquisitely difficult and, in many cases, likely to involve much pain and proper prevarication.
As observed by the High Court, the immediate interests of parents may in some cases conflict with the long-term interests of children currently unable to speak or decide meaningfully for themselves. So, too, the difficult decisions involved are likely to involve the intersection of a number of moral, ethical and clinical dilemmas and decisions for doctors as well as parents.
So, too, medical practitioners have legal, moral and ethical obligations that include the provision of all relevant information about treatment, including surgery. That includes, importantly, the proper consideration of any alternative treatments, including no treatment at all – an issue which can be extremely important where a procedure can reasonably await the acquisition of Gillick competence.
Those obligations, in so far as the direct involvement of the child is concerned, vary with the child’s age, level of maturity, comprehension and intellectual capacity.
The desire for apparent certainty provided by a court decision authorising a procedure in circumstances where doubt might otherwise attend the capacity to authorise or consent to it, is also a powerful factor pointing to the desirability of a court decision.
Yet here (as is often the case) the children are each nurtured by loving, caring parents who each and together, seek genuinely what is best for their respective children.
Where parents are properly and appropriately exercising parental responsibility as the Act and the law contemplate that they will and should; where there is no disagreement between them and where there is no “solely therapeutic” element to the proposed procedure, the dilemmas and decisions for parents and doctors alike are predominantly medical (true though it is that those medical decisions are likely to also involve difficult moral and ethical and parental considerations).
In my view, the law should tread very lightly in seeking to intrude in, or impose itself upon, those decisions. It would in my respectful view be sad indeed if the courtroom was to replace a caring, holistic environment within which approach by parents and doctors alike could deal with the (admittedly extremely difficult) medical and other decisions that need to be made.
Importantly, such an environment allows the proper consideration of, and attention to, all of the attendant emotional and psychological ramifications for all concerned. (See generally in that respect, the October 2009 discussion paper prepared by an expert advisory group (EAG) established by the Department of Human Services in Victoria “to review treatment of children born with intersex conditions”.)
Also, it would not only be sad but, potentially, an abuse of this court’s process if a decision from this court was sought by a third party in respect of a proposed procedure or proposed treatment which was plainly within the bounds of parental responsibility. An example might be where the sole purpose of such an application was as a protection against the prospect of future litigation.
Those propositions find reflection in the Court’s processes. Practice Direction 2004/9 (applicable to the Victorian and Queensland Registries of this Court) includes among its objects, the following:
…
(b)provide intending applicants and other interested parties with the opportunity to identify and discuss all relevant issues;
(c)assist in identifying, where appropriate, alternative options and strategies;
(d)ensure that a Court hearing is of “last resort” after all other options have been tested or considered and failed to, or been assessed as unable to, produce a satisfactory outcome.
Of course, it should be immediately stated that the distinction between a case which must, or should, be heard in a court is easier to state than apply. As an example, although the High Court referred in Marion’s Case to sterilization procedures that do, and do not, require court authorisation, the ramifications of conducting such a procedure in circumstances later held to be unauthorised might understandably dictate the bringing of an application as a prudent step by parent or health authority alike.
Does The Proposed Procedure Here Require Court Authorisation?
The situation here can be seen to involve the treatment of a “bodily malfunction or disease”. It also involves “removing the child[ren’s] reproductive organs”. It is, in the latter respect, a form of sterilisation procedure.
Yet, as it seems to me, the gonadectomy proposed for each child also can be seen to be, in the words of the High Court, “sterilization which is a by-product of surgery appropriately carried out to treat some malfunction or disease”. If so, the High Court specifically distinguished it from sterilisation procedures where court authorisation is not required.
As will emerge, the preponderance of the carefully compiled medical (and psychological) evidence before me suggests – tragically – that a gonadectomy is, just like a renal transplant, essential from a medical point of view as a means of maximising the prospects of eliminating (or alleviating significantly) the risk of future malignancies.
The procedure could not remotely be described as “therapeutic” (in the sense that the expression was used – and eschewed - in Marion’s Case). Nor could it possibly be suggested that the procedure is connected to the parents’ (or attending medical practitioners’) convenience. Nor can I see the potential for conflict between the parents’ present interests and the considered position of each of the children when they reach an age and stage of maturity sufficient to have the degree of input and ultimate competence referred to in Gillick.
In my view, a decision about the authorisation of the procedure contemplated falls within the scope of parental powers embraced by the parental responsibility which the parents of each of the children have by reason of being their parents.
In my view, then, it is not a procedure in respect of which court authorisation is required.
It will be clear from what I have said above that, even if court authorisation is not required, in my view, the court does have jurisdiction and power to make orders of the type sought if they can be properly classified as “parenting orders”. They can be properly so classified if they are orders about, relevantly, “any other aspect of parental responsibility”.
Parental responsibility encompasses, by definition, all the duties powers and responsibilities and authority which, by law these parents have in relation to these children. (s 61B). Orders which seek to define or clarify the limits of parental responsibility are, in my view, orders which can be classified as about “any other aspect of parental responsibility” (s 64B(2)(i)).
The orders sought, which in their effect are in the form of declarations, are, then, in my view, “parenting orders” (s 64B(1)). The court has jurisdiction and power to make parenting orders, including an order of the type sought. That jurisdiction has been properly invoked.
There is no suggestion in this case that the applications have been brought for the purpose of abdicating to the court what would otherwise be a decision as part of parental responsibility between parents and doctors or for any other ulterior purpose of the type earlier referred to.
No doubt the health authority and its medical practitioners will derive a benefit from certainty about their legal position in respect of the authorisation of, or consent to, the procedure. In that sense, it might be argued that the application is not per se brought for the benefit of, or in the best interests of, these children.
But I am not sure that is the question. If the jurisdiction is properly invoked and the orders sought are within power, the best interests of the children is the determinant of whether orders should be made and, if so, their terms. It seems to me that the determination of an issue (indeed, here, an important issue) about parental responsibility and (again, importantly) where its limits might lie, can be said to be in the best interests of the children. That there might be resultant “benefits” to others is beside the point.
That being so, the question becomes whether the terms of the order sought are in the best interests of each of these children – that being the ultimate determinant of whether a parenting order of any type should be made.
Should The Procedure Be Authorised?
Requirements
Compliance with a number of specific matters are required by the Practice Direction earlier referred to.
Here, the applications in each case were referred to the Department of Communities who have engaged in the process by providing affidavit material to the Court through an authorised officer.
That officer deposes to the parents of each child having been contacted so as to avail those parents, if needed, of assistance and support to the family from the Department. Those affidavits also depose to enquiries being made of the Department as to whether the parents had obtained, or been afforded the opportunity to obtain, independent legal advice and whether they needed any further support or assistance in obtaining any advice of any type.
Each of the parents indicated to the Department that they were satisfied with all medical advice they had received; and were not in need of any assistance from the Department.
The two cases under consideration do not, in my view, require assistance to the court to be given by an Independent Children's Lawyer (as the Practice Direction envisages might occur).
The following matters are relevant to that conclusion:
·the comprehensive nature and extent of the medical evidence before the Court in each case;
·the absence of any dispute between any parties or any other persons interested in the care, welfare and development of each child;
·the fact that both parents of each child consent;
·my satisfaction that each and all of the parents have received appropriate advice and/or counselling and are thoughtful and caring parents;
·my satisfaction that each and all parents are sincerely motivated to do what is best for their children, and, further, that each and all are plainly seeking to predominate their children’s needs ahead of any needs of their own.
The Court would not be assisted by an Independent Children’s Lawyer in this case.
Rule 4.09 specifies the evidence which must be given to satisfy the Court that the proposed medical procedure is in the best interests of the child. Many of the matters required by the Rule, have already been addressed earlier in these reasons. Some will be repeated as I address the balance of those matters by considering the medical evidence in more detail and the individual circumstances applicable to each of Sean and Russell.
As will emerge, the mandatory requirements of that Rule have been complied with in each of the applications here.
Sean’s position
The proposed treatment for Sean is supported by specialist medical evidence across a number of disciplines.
Dr L is a consultant physician in paediatrics and a consultant endocrinologist who holds a position as the full-time staff endocrinologist at … Hospital. Dr Z is a specialist paediatric surgeon. He is currently a senior paediatric surgeon at the … Hospital. Dr A is a consultant physician in paediatrics and a consultant psychiatrist. He currently holds the position of full-time consultant psychiatrist at the … Hospital.
Before considering the medical evidence, it is important, I think, to refer to the evidence of Sean’s parents each of whom have sworn affidavits in the proceedings.
I have already referred to the fact that each of the parents support the proposed procedure. It is important in my view to observe, however, that their affidavits (and, indeed, the affidavits of the specialist doctors already referred to) make it plain that Sean’s parents are, as I have already said, loving, caring, and thoughtful people who have carefully considered and weighed up the benefits and possible detriments of the proposed procedure.
So, too, I consider that the evidence reveals a close and appropriate process of consultation between medical specialists and Sean’s parents, and an examination and thoughtful assessment of the potential risks of this procedure; the potential risks of any alternatives and the components of all future treatment for him.
Specifically, each of Sean’s parents make it clear that they understand and have carefully thought about, the fact that, as a result of the procedure, Sean will not have the capacity to produce testosterone after removal of testicular tissue and will require hormone injections at puberty to develop as an adult male.
In the latter respect, it is again important to note that the preponderance of medical opinion is that Sean will very likely be infertile, even without the proposed procedure.
Unlike Russell (who is much younger) Sean has already suffered from significant medical problems, and has had peritoneal dialysis and medical management of chronic renal failure. In September 2009, he underwent a cardaveric renal transplant to insert a donor kidney. (Kidney transplantation is done in two stages with the transplanted kidney being implanted first and, upon satisfaction as to it proper functioning, the original kidney is removed later).
When the renal transplant was conducted the transplant surgeon was unable to indentify any gonadal tissue intra-abdominally. So, too, at the time of Sean’s peritoneal dialysis catheter removal in November 2009, Dr Z “identified a vas deferens but not testis structure” and, on the right side, “a structure with the macroscopic appearance of a dysplastic testis and another structure with the macroscopic appearance of an epididymis that was quite adherent over the transplanted kidney site”.
To date, fortunately, no tumours have been identified by ultrasound surveillance of Sean’s kidneys. However, the syndrome from which he suffers is associated with “high risk of bilateral Wilms Tumours” (ie cancer) of the kidneys; the risk of germ cell tumours (i.e. cancer) of the testes and kidney problems. The tumours can be fatal.
Treatment of the cancers, once they appear, involves chemotherapy (among, potentially, other things). Plainly enough, the chemotherapy may also be associated with short and long term side effects which can include “bone marrow suppression” (infection and bleeding) and medium long term risks include “hearing impairment and neuropathy nerve damage… secondary leukaemia… and pulmonary (lung) fibrosis”.
Dr L deposes that “the development of these cancers can be prevented by surgically removing both kidneys and both testes”. The doctor goes on to quote the “International Consensus Statement on the Management of Intersex Disorder” published in the journal ‘Paediatrics’ (2006) which identifies males with Denys-Drash Syndrome as having “high risk of germ cell malignancy in the order of 40% and recommends that the testes be removed at the time of diagnosis”.
Dr L goes on to say that “in past decades as mortality due to renal failure associated with Denys-Drash Syndrome was high, statistics concerning the incidence of gonadal malignancy may be skewed by deaths occurring prior to the protection of, or surveillance for, gonadal malignancy” and says:
As [Sean] has a newly described mutation in the WT1 gene, there are no previous reports of patients with this particular mutation. As a consequence of this, it is difficult to assess the risk of cancer occurring in [Sean’s] case. There are minimal case descriptions in the literature, even in the context of malen mutations. Based on the international consensus statement… the risk that he will develop a tumour of any gonadal tissue may be at least 40%.
Dr Z agrees with Dr L that a gonadectomy is the best course for Sean’s physical and medical welfare.
He deposes that the procedure is undertaken laparoscopically. The procedure “would likely only take 15 to 20 minutes and [Dr Z expects] that [Sean] would be able to be discharged on the same day”. The doctor goes on to say that it is preferable to schedule a gonadectomy at the same time as the surgery that will be performed to removed Sean’s original kidneys.
Dr Z is of the view that “the removal of the testis will remove the risk of malignant transformation in the testis”.
Dr Z does not anticipate any subsequent surgery being required save that, in adolescence, Sean may himself elect to have prosthetic testes surgically inserted into his scrotum.
Dr A has met both Sean and his parents. He notes that Sean has been raised as a boy from birth and confirms that “both parents are very aware of the risks of malignancy and wish for the procedure to be completed as soon as medically indicated”. The doctor deposes to:
… the possible long term social and psychological effects for [Sean] of the medical procedure, including “issues of identity, namely how he as an adolescent and young adult with adjust to the knowledge that he is infertile and unable to have children and pass on his ‘genetic imprint’. It is reasonable to suggest that these issues may raise questions in [Sean’s] mind about his sexuality.
Dr A postulates, however, possible long term social and psychological effects for Sean if the procedure is not carried out. In particular, he identifies the “significant risk of malignancy would likely cause significant anxiety to [Sean]”.
The doctor also reports on the anxiety felt, understandably enough, by Sean’s parents about the prospect of future malignancy and the continual process of ultrasounds to detect same. It should be said that the evidence speaks of the possibility that malignancy would go undetected notwithstanding the ultrasounds. The doctor says:
… in my opinion, chronic anxiety and depressive states in parents can impact negatively on a child’s emotional and social development. The knowledge of a significant risk of malignancy in [Sean] may cause this type of anxiety and depression in [Sean’s] parents.
Dr A also notes that “regardless of whether the procedure is performed [Sean] is almost certainly to be infertile. The psychological issues related to infertility would therefore still arise during his adolescence and early adulthood”.
Dr A also makes the obvious point that Sean, at his age and stage of development, is not “Gillick competent”.
It is important to note in that respect that the gonadectomy should be performed contemporaneously with the removal of Sean’s kidneys later in the year. The consensus of medical opinion is against delaying the surgery further because of the risk of malignancy already referred to. Accordingly, Sean will not be Gillick competent by the time that the consensus of medical opinion suggests that this procedure should be performed.
It is convenient to now refer to the matters set forth in r. 4.09 of the Family Law Rules 2004 that have not already been dealt with earlier in these reasons.
Obviously, the gonadectomy is irreversible and will render Sean infertile. However, it is almost certainly the case, based on the consensus of medical opinion, that Sean is already infertile. The principle purpose of the procedure is to obviate the risk of Sean developing cancer in his residual testis.
The nature of the procedure has already been alluded to; it involves the making of two small incisions in the lower abdomen via laparoscopic procedure. As mentioned above, it will be necessary as Sean approaches puberty for testosterone replacement therapy to be undertaken to induce puberty. And he will require ongoing testosterone treatment during his adult life. The testosterone treatment is designed to allow Sean to experience ordinary sexual function.
The risks deriving from the procedure itself emerge from, in particular, Dr Z’s evidence. They are the ordinary risks associated with the laparoscopic procedure and its associated anaesthetic. That is to say, there are risks associated with surgery which, if Sean did not undergo surgery, would not be present. However, he will, of course require surgery in any event in respect of his renal condition.
Also, as outlined above, there are significant risks indentified by the doctors associated with not carrying out the surgery, including the significant risk of future malignancies and the risks associated with the treatment of those malignancies. If the surgery is not carried out there will be a need for ongoing and regular scans designed to detect malignancy and there is a risk that a malignancy will go undetected by those scans and that any such malignancy will be fatal.
There are also psychological and emotional risks associated both with the procedure and with not having the procedure as outlined by Dr A. I assess the greater risk in that respect to be associated with the latter.
One alternative is to not carry out the procedure. That has already been discussed. It is not, in my view, a viable alternative in Sean’s best interests.
A further alternative to that which is proposed is to attempt to surgically relocate the remnant left testis to the scrotum.
Dr Z deposes that “there is a less than 10% chance that the testis could be moved to a satisfactory position” and goes on to depose that it is:
… usually difficult to monitor testes once they are relocated (even if this was possible) because they are rarely able to be placed in a completely normal position in the scrotum and they usually atrophy once relocated making the testes small and difficult to assess for the development of cancer.
In any event, Dr Z is of the view that any such relocated testes would be “unlikely to produce viable sperm”. Very significantly, Dr Z is of the view that the risk of cancer to the testes would remain.
On balance, it seems to me that the proposed treatment is more consistent with securing Sean’s best long term outcomes both physically and psychologically.
In my judgment, authorisation of the proposed treatment is in Sean’s best interests.
Russell’s position
Russell, too, has been under the care of a number of highly qualified medical specialists.
Professor H is a consultant physician in paediatrics and a consultant endocrinologist. She is Professor and staff endocrinologist at the … Hospital. Dr Z is also caring for Russell. Dr T is a paediatric nephrologist and the Director of the Renal Unit at the … Hospital. Dr A is also involved in Russell’s care.
The findings made above with respect to Sean’s parents apply equally to Russell’s parents.
I am similarly satisfied, upon the basis of all of the evidence before me that each of them have carefully and thoughtfully considered all of the medical advice they have been given and that an appropriate process of consultation has occurred with them about Sean’s care.
I am also satisfied that each of them fully understand the nature of the condition as explained to them and the details (including risks) of the proposed procedure and its aftermath. I consider that they, too, are motivated to make caring and loving decisions based on what they consider to be appropriate in Russell’s best interests.
Russell is as yet a baby, about 18 months old. When he was born he had ambiguous genitalia. He was transferred to the … Hospital shortly after his birth for investigation and, after numerous tests were conducted, Professor H established that Russell was genetically a male. An ultrasound seeking to identify Russell’s abdominal structures was inconclusive.
As a result, it was necessary for a diagnostic laparoscopy to be performed, including a biopsy so as to provide accurate information about Russell’s internal anatomy and so that an informed decision could be made about Russell’s sex of rearing. That operation revealed that Russell has “immature testes which are located in his abdomen and that [Russell] does not have any female organs”. The consensus of medical advice seems to be that “the doctors are 99.9% sure that [Russell] is infertile because his testes will not work properly”.
Dr Z saw Russell for the first time about a month after he was born. His assessment was that Russell had: “a severe hypospadias (meaning that the urethra did not open at the end of his phallus structure, but opened at the base of the phallus); there were not palpable testes.”
Subsequent testing ordered by Professor H ultimately revealed that he may have a “WT-1 mutation which is known to adversely affect kidney function”, and as a result, Russell was referred to Dr T whose testing revealed “bilaterally enlarged kidneys”, “markedly elevated” urine protein specimen and a most likely diagnosis of Denys-Drash Syndrome. The latter diagnosis was confirmed subsequently by further genetic testing.
Dr T speaks of the “high risk [of] bilateral Wilms Tumours of the kidneys and a risk of germ cell tumours of the testes”. Each can be fatal. He, too, is of the view that the tumours “can be prevented” by surgically removing both kidneys and both testes.
It is to be noted that, unlike Sean, Russell has not yet experienced renal failure. Dr T deposes:
Given the risk that Wilms Tumours will develop on the kidneys, regular ultrasound surveillance is performed on a child such as [Russell] up until the time that his kidneys fail. After his kidneys fail, a transplantation is performed, and the child’s kidneys are removed to remove the risk of later development of Wilms Tumours.
Dr T goes on to say that:
… genetic males with abnormal and intra-abdominal gonads are at the highest risk of malignancy and gonadectomy to remove the testes is recommended at an early age, but, at the present time, the timing of the performance of the medical procedure is not currently dependent on treatment of [Russell’s] renal condition.
The evidence of Dr Z and Professor H as to the procedure itself and any associated risks and subsequent treatments (for example testosterone as puberty approaches) does not reveal any significant differences for Russell than the issues applicable to Sean already discussed.
Dr A has obviously not spoken to Russell, given his age, but has seen both his parents.
His consultations reveal that Russell’s mother has “a long history of major depression characterised by periods of low mood, social isolation, self harm (cutting) and suicide attempts”. She has been “very stable now for at least 6 years”. Fortunately (and, as it seems to me, significantly) there was no evidence of post-natal depression, and, in that respect, the mother had frequent psychiatric follow up during her pregnancy with Russell because of her past history.
Dr A comments that the mother “appears to have coped well with the stress of delivery, initial uncertainty about [Russell’s] gender (they had been expecting a girl) and other medical problems”.
The father has a history of seizures resulting initially from a brain tumour and subsequent seizures in mid-2009 in respect of which ultimately an MRI scan showed scar tissue with no evidence of any tumour recurrence.
Dr A deposes that Russell’s parents are both pleased with the decision to raise Russell as a boy. They recognise that “the likelihood that he could produce viable sperm in the future, given his dysgenetic gonads, whilst unknown, would be very low” and they recognise that a bilateral gonadectomy would render Russell infertile.
Dr A identifies possible long term social and psychological effects in respect of the carrying out of the treatment, or if it is not carried out, that, again, have no discernable differences from those postulated in the case of Sean already outlined.
In Russell’s case, though, there is, additionally, a question about the functionality as an adult of his reconstructed penis which “may raise questions in [Russell’s] mind about his sexuality and sexual identity, and cause psychological distress”.
As with Sean, one alternative is to do nothing. The risks associated with that course of action are very similar to Sean, noting that, in Russell’s case, the risk is increased because “the accuracy of the screening for tumours is reduced when the testes are high in the abdomen, as in [Russell’s] case”.
In Russell’s case, another alternative to the suggested procedure is to “perform a bilateral orchidopexies which involves relocating the testes to the scrotum”.
Professor H says that “following this surgery, the testes would need to be frequently examined and assessed by ultrasound to screen for malignancies. Biopsies would also be required.” Dr Z says that, by reason of Russell’s testes being high in the abdomen, it is (as with Sean) highly unlikely that Russell’s testes could be surgically brought down to the scrotal position.
Dr Z goes on to say that, even if that could occur, the viability of the treatment as an alternative to the gonadectomy is significantly queried because of a number of factors: there is “a 40% risk of the development of tumours”; there is a potential that “these tumours could go undetected, even with regular ultrasound…”; “the treatment for tumours would involve surgical removal of the tumour and possibly chemotherapy and/or radiotherapy….”; and, finally, there are “mortality risks associated with the development of these tumours, however the level of risk is highly dependent on the particular type of tumour, the treatment provided and how early the tumour is detected”.
As with Sean, the consensus of medical opinion is that it is extremely unlikely that, in the absence of the procedure, Russell’s testes would perform normally or produce functional sperm for reproduction. Professor H is of the view that “[Russell] will be sterile whether or not the testes are able to be relocated”.
On balance, it seems to me that the proposed treatment is more consistent with securing Russell’s best long term outcomes both physically and psychologically.
In my judgment, authorisation of the proposed treatment is in Russell’s best interests.
Conclusion
I will make orders in the form earlier set out which are broadly in accordance with those contained in the respective applications.
I certify that the preceding one hundred and eighty (180) paragraphs are a true copy of the reasons for judgment of the Honourable Justice Murphy delivered on 26 October 2010.
Associate:
Date: 26 October 2010
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