Re Joel [2013] NSWSC 1299

Supreme Court New South Wales

Medium Neutral Citation: Re Joel [2013] NSWSC 1299 Hearing dates: 5 September 2013 Decision date: 05 September 2013 Jurisdiction: Equity Division Before: Bergin CJ in Eq Decision: Order not made Catchwords: [CHILDREN] - application for approval of medical procedure in parens patriae jurisdiction where Minister has parental responsibility for child - where parents and Minister consent to treatment - responsibility of parents or those with parental responsibility - where Court order unnecessary. Legislation Cited: Children and Young Persons (Care and Protection) Act 1998 Cases Cited: Re Baby D (No 2) (2011) 45 Fam LR 313 Category: Principal judgment Parties: Director-General, Department of Family and Community Services (First Plaintiff) Minister for Family and Community Services (Second Plaintiff) Mother (First Defendant) Father (Second Defendant) Representation: Counsel: J Harris (solicitor) (Plaintiffs) M Barnett (Independent Representative for child) Solicitors: IV Knight, Crown Solicitor (Plaintiffs) File Number(s): 2013/269934

Judgment - ex tempore 1This is an application brought by the Director-General of the Department of Family and Community Services, as first plaintiff, and the Minister for Family and Community Services, as second plaintiff for an order authorising certain medical treatment for a child (referred to in the proceedings as "Joel"). An interim order has been made by the Children's Court under the Children and Young Persons (Care and Protection) Act 1998 granting parental responsibility for Joel to the Minister. The defendants are the biological parents of Joel who was born on 15 March 2012. Joel has been diagnosed with infantile malignant osteopetrosis, a rare genetic disorder. One child in 200,000 to 300,000 is affected. 2The history of Joel's lack of thriving and treatment is set out in the affidavits upon which the plaintiffs have relied today: that of Megan Hall, a caseworker with the first plaintiff, affirmed on 3 September 2013, and that of Steven John Keogh, a staff specialist in paediatric oncology at the Children's Hospital at Westmead, sworn on 4 September 2013. 3Mr J Harris, solicitor, appears for the plaintiffs, and leave has been granted to Ms M Barnett, of counsel, to appear to make submissions on behalf of Joel. The parents have not appeared. However, in a letter of today's date (Exhibit A), the mother's solicitors advised the Crown Solicitor that the mother consents to the medical treatment for Joel, as described in Dr Keogh's affidavit. It is also apparent that Joel's father has given his consent to the medical treatment. 4The interim order for parental responsibility is in place until 20 September 2013, when the matter is next back before the Children's Court. It is apparent that parental responsibility may remain with the Minister for a period. However, Mr Harris submitted that this is not certain. I indicated to Mr Harris that it seemed to me that because the order for parental responsibility has been made by the Children's Court, the Minister had the responsibility to consent or not to consent to the procedure that has been proposed by Dr Keogh and in those circumstances it was difficult to see why an order should be made. 5The treatment proposed for Joel is a bone marrow transplant. Joel's clinical presentation includes that his optic nerves are damaged. Dr Keogh gave evidence that it is likely that he can see dark and light, and that he may see objects moving in front of him, but that his vision is no better than that. Dr Keogh's evidence is that a bone marrow transplant cannot correct the damage already done to Joel's eyes. However, the best chance for him to retain what little vision he has is to proceed with the bone marrow transplant within the next four to six weeks. However Dr Keogh indicated that, in any event, Joel may lose his vision because bone changes after the transplant do not correct for six to twelve months. 6Presently, albeit that he is underweight and not yet walking, Joel is quite well. Tests have revealed that he has good hearing and retains control over his facial muscles. Dr Keogh expressed the opinion that the longer Joel is without a bone marrow transplant, the greater the chances are that his hearing and ability to control his face will be affected. Apart from these difficulties, Joel does not have any other neurological issues. However, there is a significant risk that these will begin to develop at some time in the future. Children with this disorder suffer that risk because of their rapidly growing brains being hindered by a lack of skull growth. This may in turn cause problems, such as developmental issues and hydrocephalus (increased pressure in the head.) 7Dr Keogh also gave evidence that if the bone marrow transplantation is delayed, such that Joel reaches the stage where it is apparent that his quality of life will be dramatically affected by his disabilities, he would not continue to recommend that the transplant take place. He cautioned that this is a possibility the longer Joel waits for a transplantation. Dr Keogh candidly indicated that it is not possible to know with certainty how quickly changes will occur in Joel's body, but that they will inevitably occur as he continues to grow. 8Dr Keogh has set out in detail the process for the bone marrow transplantation and it is unnecessary to descend into that detail. However, there are post-transplantation effects which are of concern, no doubt to the doctors and to those who care for Joel. Should a successful transplantation occur, Joel will thereafter remain within the confines of the hospital for approximately eight to twelve weeks. He will not be discharged until he is clinically well enough, but once discharged, it will be necessary to have a period of strict isolation, apparently, because of his immunological vulnerability. Enormous steps have been taken to prepare for Joel's transplant. A donor has been identified and awaits confirmation of the need to attend to take part in the transplant. Notwithstanding the removal of parental responsibility from the parents to the Minister, the medical practitioners, including Dr Keogh, have consulted with the parents in relation to Joel's treatment and it is anticipated that such consultation will continue. 9These are difficult decisions for a parent and for anyone with parental responsibility. The weighing up of the possible positive outcomes for the infant compared to the prospect of demise need careful reflection. However it is the person with parental responsibility who must be strong enough to make those decisions, to assist with the process of the medical and therapeutic needs of the child. It is important, where parental responsibility is conferred on the Minister, that the Minister make a decision, and in this case a prompt one, to assist with the medical treatment of the child. During the course of submissions Mr Harris indicated that he is now instructed that the Minister will consent to the bone marrow transplant for Joel. However Mr Harris indicated that the Minister would appreciate some guidance as to why the Court would not make an order. 10Mr Harris referred me to the decision of Young J in Re Baby D (No 2) (2011) 45 Fam LR 313; in particular at 357 [227] and following. His Honour said (footnote omitted): [233] In arriving at my conclusions that parents, a hospital or medical practitioners may properly seek court authorisation for decisions that are within the ambit of the "unclear dividing line" discussed in Marion's case I strongly reiterate the sentiments of Murphy J in Re Sean and Russell that the law should tread lightly in seeking to intrude or impose itself upon these extremely difficult decisions. In that context, however, it is important to ensure that the court continues to have a role in circumstances where "court authorisation is necessary and is, in essence, a procedural safeguard" for the performance of medical interventions considered to be a "special medical procedure" or "special case", particularly where issues in conflict with the best interests of the child may exist and may be a matter of real concern. [234] Thus where there is a real and genuine issue or concern in relation to a medical treatment or procedure that is to be performed on a child, and an application is brought pursuant to the Act, for a proper purpose, and not in avoidance of parental responsibility, if the court's jurisdiction is invoked then the court has a duty to hear and determine the application according to law. 11This is of course a different case. This is a case in which it is accepted that a parent, or a person with parental responsibility, can weigh up the matters that the medical practitioners have carefully placed before them and either give consent or not give consent; albeit that Mr Harris suggested that it is a matter that comes close to the "unclear dividing line", to which Young J referred. However the Minister now accepts that it is not over the line and that the Minister can give the consent and will do so. 12The Court's resistance to the making of an order in this case is because it is unnecessary. When the Court is exercising its parens patriae jurisdiction it must be careful not to intrude unnecessarily into matters. It is understandable that medical practitioners, parents, and those with parental responsibility, would want the imprimatur of a Court order, particularly where there is a fear that the treatment may be unsuccessful and the child may perish; but that is not the role of the Court in this particular application. However I should say that on the evidence, it seems to me that the Minister would be justified in consenting to this treatment. 13No order will be made. I grant liberty to restore on one day's notice or at short notice.