H v P1 and P2

[2018] NSWSC 1676

Supreme Court

New South Wales

• Amendment notes

Medium Neutral Citation:	H v P1 and P2 [2018] NSWSC 1676
Hearing dates:	5 September 2018
Date of orders:	05 September 2018
Decision date:	02 November 2018
Jurisdiction:	Equity
Before:	Robb J
Decision:	See paragraphs 38 to 54.
Catchwords:	CHILDREN - parens patriae jurisdiction
Cases Cited:	Royal Alexandra Hospital for Children v J [2005] NSWSC 465 Re Paul [2008] NSWSC 960 Director-General Department of Community Services; Re Jules [2008] NSWSC 1193 Secretary Department of Health & Community Services v JWG & SMB (1991-2) 175 CLR 218 Re Bernard [2009] NSWSC 11 Re Paul [2008] NSWSC 960 Royal Alexandra Hospital for Children v J [2005] NSWSC 465 Re Jules [2008] NSWSC 1193 Minister for Health v AS & Anor [2004] WASC 286 The Sydney Children’s Hospital Network v X [2013] NSWSC 368 Re L 2 Fam CR (UK) 524
Category:	Principal judgment
Parties:	H (Plaintiff) P1 (First Defendant) P2 (Second Defendant) C (Child) NSW Legal Aid (Independent legal representative of the child)
Representation:	Counsel: S Woods (Plaintiff) C McConaghy (First and Second Defendants) G Moore (Independent legal representative of the child)   Solicitors: Minister for Health (NSW) Legal Branch (Plaintiff) NSW Legal Aid (Independent legal representative of the child)
File Number(s):	2018/271480

Judgment

1. The plaintiff, a public hospital, commenced these proceedings in the Equity Duty List on 4 September 2018, by summons to invoke the parens patriae jurisdiction of the Supreme Court in relation to proposed urgent eye surgery to a child born prematurely on 1 April 2018. The plaintiff proposed to undertake the eye surgery on 6 September 2018 in respect of this very young child. The application was necessary because the parents of the child, who are the first and second defendants, would not consent to the surgery.

2. I made various procedural orders on 4 September 2018, including that the summons was to be returnable for hearing before me at 2 PM on 5 September 2018, that the summons and other documents be served on the child’s parents, and by order 6 that the identities of persons involved in the matter be suppressed.

3. Order 6 was in the following terms:

The Court…

In the exercise of the court’s Parens Patriae jurisdiction makes the following orders until further order of the Court:

a.   that the child patient referred to in par 4 of the affidavit be known as “C”.

b.   that the female parent of the child being the first defendant, be referred to as “P1”.

c.   that the male parent of the child, being the second defendant, be referred to as “P2”.

d.   that the hospital identified in the affidavit be referred to as “H”.

e.   that publication or disclosure of any information tending to reveal the identity of C, P1, P2 of H, any witness in the proceedings, and or the medical practitioners, nursing staff or other such persons who have provided or are to provide medical, surgical and or nursing or ancillary treatment to C is prohibited.

f.   that subject to any contrary order of the Court, the Court file not be available for review by any person other than C (upon reaching her majority) P1, P2 the plaintiff and their legal representatives.

4. In accordance with the suppression orders, I will in these reasons refer to the child as “C”, the parents of the child as “P1” and “P2”, and the hospital as “H”.

5. On 5 September 2018, the hearing of the matter occurred before me in closed court and appearances were made by counsel for the H, counsel for P1 and P2, and counsel for the independent legal representative of C for the purposes of the proceedings. I had earlier on 5 September 2018 made an order appointing a named employee of Legal Aid NSW as the independent legal representative of C.

6. At the conclusion of the hearing, after cross-examination of the solicitor who made an affidavit in support of the application by the plaintiff and P1 and P2, and submissions by the parties and the independent legal representative, I was satisfied on the evidence of relevant expert medical opinion that the proposed surgery should occur on 6 September 2018 as planned. Given the time of the evening, I indicated that an ex tempore judgment would not be appropriate and that the matter was of such importance that it justified proper reasons being given. As will be apparent in this judgment, because I have already made a decision about the outcome of this matter, parts of my reasons are stated in the past tense which would ordinarily have been stated in the present tense.

7. The substantive order that I made on 5 September 2018 was in the following terms:

The Court

1.   Orders that the Court authorises H (the Hospital), by the medical, nursing and other staff employed or retained for the purpose, to perform on C the ophthalmic surgical procedure known as pars plana vitrectomy and to undertake any associate intervention, care or treatment, as they (the medical staff) consider in the exercise of their medical judgment to be desirable or necessary arising out of or consequential upon the procedure authorised by this order.

Background

8. The background to the proceedings was described in the affidavits of a legal practitioner employed by the New South Wales Ministry of Health on behalf of the H, filed on 4 and 5 September 2018.

9. On 1 April 2018, C was born at 24+4 weeks’ gestation, with a birth weight of 680 g.

10. P1, as a result of bleeding from a placental abruption, underwent an emergency caesarean section for placenta praevia.

11. C required initial resuscitation and was intubated at two minutes of life. Soon afterwards, C was transferred to another hospital and placed in mechanical ventilation at four hours old.

12. From 16 April 2018 to 16 July 2018, C underwent multiple surgical procedures, including repeated laparotomies for bowel obstruction, a surgical closure of patent ductus arteriosus, multiple laser surgeries of both eyes for retinopathy of prematurity stage 3, and an insertion of a Hickman line for intravenous access and to continue with total parental nutrition due to ongoing feed intolerance. Following medical advice, P1 and P2 consented to all of the procedures performed on C.

13. On 23 July 2018, an ophthalmology review found retinopathy of prematurity stage 4 in both of C’s eyes.

14. On 24 July 2018, a multidisciplinary family meeting occurred with P1 and P2, a neonatology team, and a paediatric surgeon. After considering the degree of C’s medical issues, a decision was made in the meeting to stop medical treatment and to redirect C to palliative care. On 27 July 2018, C was transferred to palliative care.

15. On 20 August 2018, C was transferred to the H under the care of a doctor. C then made an unexpected recovery, and palliation ceased. In the H’s legal representative’s affidavit dated 4 September 2018 at par 20, C’s improved health was described in the following terms:

Has a chronological age of five months and a corrected gestational age of six weeks;

Does not require respiratory / breathing support;

Tolerates formula bottle feeds at nearly full quota with acceptable volumes of stoma output;

Has weaned off morphine infusion;

Is behaving neurologically appropriate for current gestational age;

Weighs 2.7 kg (as at 31 August 2018).

Proposed Surgery

16. The H has made this application on the basis that, due to the progression of C’s retinopathy of prematurity, C requires urgent surgery to stabilise the left eye and reattachment of the retina, to which P1 and P2 would not give their consent. C’s right eye has already progressed to total detachment of the retina.

17. The Associate Professor who was scheduled to undertake the surgery was described by the H during the hearing as being one of two doctors in Australia who have the ability to conduct the surgery. That Associate Professor said the following about the surgery in an email dated 31 August 2018, which was forwarded to the legal representative of the H on 4 September 2018:

1.   The aim of the surgery is to stabilise the eye and reattach the retina.

2.   The surgery will definitely entail a pars plana vitrectomy with cryotherapy and gas (most likely air). This is a micro-incisional procedure in which we would use 25G instruments. 3-4 ports will be placed through the conjunctiva and sclera to access the vitreous cavity. Most of the vitreous is removed with a high speed cutter. Any membranes elevating the retina will be removed as far as is safe to do so (this may entail use of intraocular scissors). Cryotherapy (freezing) will be applied to the peripheral retinal tissue (which is believed to be driving the abnormal fibrovascular process which is driving the retinal detachment and haemorrhaging). If required, the lens will be removed (lensectomy), retinal laser will be employed and a silicone band placed around the eye (scleral buckling). By way of example, this is all normally done under sedation in adults and with an appropriate anaesthetic (regional block). It is usually well-tolerated during the procedure (note that the retina itself doesn't feel touch or pain). Post operative comfort is normally managed with minimal analgesia (paracetemol).

3.    Intended benefit - 40% chance of reattachment of the retina (the goal). There is close to a 0% chance of reattachment without intervention (we would anticipate she would progress to total detachment, as she has in the other eye).

[C] has a sub-retinal haemorrhage and this is likely to confer a poorer visual prognosis (even if surgery is successful in reattaching the retina). We would anticipate "hand motion" or "counting fingers" level vision.

The risks are:

-   Loss of the eye (rare; usually quoted as 1 in 10,000)

-   Total loss of vision (if she progresses to total retinal detachment).

-   Infection (endophthalmitis - 1 in 3,000)

-   Sympathetic ophthalmia (1 in 3,000-6,000. Usually more of an issue if the fellow eye has sight)

-   Cataract (50% chance in older patients, but children are relatively resilient to the effects of vitrectomy and cataract is rare unless the lens is touched by instruments).

-   Progression to total retinal detachment (60%)

-   Elevated intraocular pressure (usually transient and responsive to local measures such as drops)

Ideally we would have operated a month ago. However, operating within the next week would be best given the current status

18. It is apparent from the email by the Associate Professor that surgery would ideally have been undertaken a month ago, that Baby C’s right eye had already progressed to total detachment of the retina, and that the best result from the proposed surgery was expected to give Baby C "hand motion" or "counting fingers" level vision, which has been described as navigational vision.

19. The affidavit of the legal practitioner for the plaintiff dated 4 September 2018 states the following about the surgery and associated risks at pars 22 to 28, which is largely a repetition of the email extracted above by the Associate Professor:

The surgery will entail a pars plana vitrectomy with cryotherapy and gas (most likely air).

The surgery is well-tolerated and post-operative comfort is normally managed with minimal analgesia, such as paracetamol.

The operation confers a 40% chance of reattachment of the retina. There is close to a 0% chance of reattachment without intervention. It is anticipated that the [right] eye would progress to a total detachment without intervention, as has occurred in the left eye.

Baby C has a subretinal haemorrhage and this is likely to confer a poorer visual prognosis. The surgery if successful will offer Baby C navigational vision.

The risks are:

Loss of the eye (1 in 10,000);

Total loss of vision (if retina detaches);

Infection (endophthalmitis — 1 in 3,000);

Sympathetic ophthalmia (1 in 3,000-6,000);

Cataract (rare in children);

Progression to total retinal detachment (60%);

Elevated intraocular pressure (usually transient and responsive to local measures such as drops).

To increase the chance of success, the operation must be performed in a timely fashion.

A team is able to be organised to perform the operation on Thursday 6 September 2018.

20. During the hearing, the parties clarified that the risks stated in par 19 above are risks that may arise if the surgery is conducted. Without the surgery there was close to a 0% chance of reattachment of the retina. Counsel for the H said this meant, in plain terms, that without the surgery there was a 100% chance of blindness in C, and a 40% chance of navigational sight if the surgery was carried out.

21. P1 and P2 withheld their consent to the surgery prior to and at the hearing on 5 September 2018. During the course of C’s admission to the H, when palliation had ceased, P1 and P2 were asked on multiple occasions by members of the medical team to consent to the retinal re-attachment surgery taking place, but they did not provide their consent.

22. On 3 September 2018, the Ophthalmic Registrar asked P1 and P2 to consent to the surgery, which they did not give.

23. On the evening of the 4 September 2018, after the plaintiff had approached me as duty judge and served the summons on P1 and P2, a meeting occurred between a general paediatrician (who I will call ‘DR1’), P1 and P2 and an after-hours registrar about the proposed surgery to C’s left eye. Additional attendees throughout the meeting were another after-hours registrar and a child protection consultant. During that meeting, P1 and P2 said they did not ultimately refuse consent and were not explicitly against the procedure, but they expressed concerns that there had been many different opinions and mixed messages regarding what was best for C.

24. The notes from the meeting record the following about the concerns of P1 and P2:

[DR1] discussed with the parents [C’s] long term prognosis re: eyesight, in view of known retinal detachment, and the requirement for theatre in order to try and improve things

– Advised that formal consent is required for the procedure, which will need to be granted by the courts since it is not coming from the parents.

[P1] expressed concerns that the procedure may be dangerous and even that [C] may not survive it (from an anaesthetic/intubation point of view) as she has lots of comorbidities.

- [P1] also reports a previous issue after extubation from [C]'s initial eye surgery, so understandably has concerns about the safety of further surgery

[DR1] explained that if this goes to a court order, a lawyer will represent [C] and put to a judge the pros and cons of the procedure, and a judge will decide if the procedure should go ahead.

- Explained that currently [C]'s condition is relatively stable and that is the reason we need to consider surgery, to try and improve her quality of life from an eyesight point of view, for later in her life.

[P1] is understandably upset as she has been given lots of different opinions regarding the window of opportunity for eye surgery - she reports she was told 5 weeks ago that if the surgery was not done at that time then [C] would be blind. Now she is being told the same thing again.

…

[P1] is concerned that [C] has come so far in terms of growth and symptom control, and that another operation might set her back.

The parents say that they do not ultimately refuse consent, but that there have been lots of different opinions regarding what is best for [C], and they themselves do not know what the right decision is. Their understanding was that a third party opinion would help make an informed decision.

…

Parents are again understandably upset as they have received a court summons (via email from a lawyer, during the meeting) for tomorrow, which they were not aware was going to happen.

…

-   Parents stressed again that they are not "against" the procedure, they have just have lots of mixed messages from people regarding the operation and could not make a decision. This is also inaccurately stated in the letter.

…

- Parents expressed concern that there were significant complications from the first eye surgeries

- Parents are concerned about consenting to the surgical procedure because of their previous experience with [C] undergoing surgical procedures. These include;

- difficult intubation - prolonged post-operative intubation and then 2 weeks of CPAP in ICU with inflamed airway

- sepsis post another operation - she required extended period of intervention and antibiotics after the eye surgeries previously due to becoming septic. [P1] stated that "she is now concerned that [C] became so unwell after the last surgery with this team, and [P1] is therefore cautious of the ophthalmology team performing the surgeries.

- [P1] also stated that she is concerned that the courts will make a decision for their daughter without knowing her and not knowing how she will survive

…

- [P1] also expressed concern that she has a close relationship and respect for the NICU teams who they have known for 5 months and looked after [C] for that time. They have already been told that [C] was not going to survive and she was going to be palliated, and have accepted that with the NICU team, but now are at a different spot and it's hard to develop a new relationship with a new team, and to trust them.

- [DR1] acknowledged this and emphasised that [C] has proven teams wrong, and that in her current condition we cannot palliate [C] as this would not be ethical or appropriate. lnstead we need to be guided by the teams available and the experts in the area. The ophthalmology team have recommended this treatment for her eyes to give her a chance to see.

- [P1] stated they have been told 10% success rate, whereas in the ophthalmology notes it states 40%. The family do not have a particular number at which they would consider a procedure, they are still concerned about the risks as discussed with anaesthetics.

…

[The child protection consultant] emphasised the parents need to be clear when they would or would not consent to procedure

- [P2] stated he feels like at the current state, they have been told 10% or 40%, these are very different numbers for the same procedure, so they question the validity of the statistics.

- [P1] stated that she does not feel she can consent to a procedure where the outcomes are so variable. The validity of the percentages seem arbitrary according to parents, and they feel that the last procedures had success rate of 90% and they didn't work, so why should they proceed with something with such low likelihood of success.

[P1] emphasised that pain was not a concern for her regarding [C]

…

- both parents want it to be clear that the issues are predominantly [C]'s comorbidities, variable risk percentages provided, and possible serious neurological sequelae as a result of the surgical procedure.

- Parents are concerned about consenting also due to risk of [C] deteriorating after surgery and deteriorating in terms of feeding and thriving

- [P1] also said that [C] experiencing pain would not be a reason for them to refuse consent to a procedure. [P1] emphasised she has been told that [C] may develop pain in her eye as a result of retinal detachment, and they were willing to consent to surgical intervention to manage this pain.

- [P1] also stated that both she and [P2] are concerned that they have been given conflicting advice from all neonatologists in [a Hospital] NICU and this has often changed the direction of [C]'s care. This has made it very difficult for the family to consent to more procedures for [C].

…

She feels [C] is doing her best, and they will be beside her. She is not trying to be opposed to the hospital and against all intervention, she wants to think [holistically] about what sort of life [C] will have and minimise the hurdles. She feels that pushing and rushing [C] into another surgery is not necessarily the best option for her. [Emphasis added]

25. I have emphasised in this extract the parts of the notes where it is recorded that C’s parents did not state that they were definitely opposed to the surgery taking place. Rather, they were unwilling to give their consent for the reasons recorded in the notes.

25. The notes from the meeting record the following about risk to C’s brain and anaesthetic risks:

During the meeting [DR1] called [C]'s neurologist:

Advised there is no risk from the procedure for the brain (which was one of [P1]’s concerns), but only to the eyes.

…

17:46: Called [An anaesthetist] to discuss anaesthetic risks to [C]. Advice given:

- Negligible risk of neuro-developmental outcomes from anaesthesia in [C]

- A previous multinational, multicentre study of children having short, hernia repair surgery, showed no neurodevelopmental adverse outcomes

- No cardiac/respiratory reasons specifically for [C] that [put] her at higher risk to other children

- The risk of blindness is much higher than the anaesthetic risk for [C]

27. Notwithstanding that P1 and P2 withheld their consent to the surgery, it is clear from the evidence that P1 and P2 acted cooperatively with the medical team at all times, and held genuine and understandable concerns about C undergoing the proposed surgical procedure.

The hearing on 5 September 2018

28. At the hearing, the primary relief claimed by the H was a declaration or order that the Court authorise the H by its staff to perform on C the ophthalmic surgical procedure known as pars plana vitrectomy. To that end, the central issue in the hearing was whether the proposed surgery was in the best interests of C, having regard to the risks involved in the surgery and the views of P1 and P2.

29. The hearing on the 5 September 2018 was supposed to occur at 2:00pm, but was delayed until 3:20pm because counsel for the parties and P1 and P2 were in a telephone conference with medical doctors about the proposed surgery. No record of that telephone conference was provided to the Court, but counsel for the H said the following about the substance of the telephone conference:

WOODS: Your Honour, perhaps from the Bar Table I can inform you of this. All counsel at the Bar Table have had, when your Honour so kindly gave us time, telephone conferences jointly with [a neonatologist], [a neonatologist] and [a paediatrician] in an effort to ensure that the information that was on information and belief was representative of the opinions of those doctors.

…

WOODS: … it was my interpretation of the statements made by each of those three doctors that it is their view that it is appropriate for the surgery to take place.

30. It was clear that the relevant doctors continued to support the proposed operation and the doctors’ unanimous support for the operation was not disputed by the parties.

Witness – Solicitor for the H

31. The solicitor for the H was cross-examined by counsel for P1 and P2. The effect of her evidence was that the H supported the surgery on the basis of all of the medical evidence received, and that the Court should order the surgery to occur. It was clear from the way she gave her evidence that she was limited in what she could say, and she would not give certain answers to questions about C without an evidential basis for doing so. To this extent it meant that her evidence, both in the affidavits and in the witness box, was largely a reflection of the evidence communicated to her by the medical doctors.

Witnesses - P1 and P2

32. Cross-examination occurred of each of P1 and P2. The position each took was the same as that stated in the file note of their conversation with the doctors on 4 September 2018. That is, P1 and P2 each expressed concerns that there had been many different opinions and mixed messages regarding what is best for C, and they were therefore not comfortable giving their consent to the surgery. At one stage during cross examination, P1 explained that they had been given a variety of different opinions regarding the opportunity to undertake eye surgery on C, and that P1 and P2 had received advice five weeks earlier that if the surgery was not done within a 48 hour window, C would become blind by the end of the 48 hour window, which P1 said did not occur.

33. However, it is to be noted that in fact C’s right eye did proceed to total detachment of the retina, which provided some justification for the need to undertake surgery on C’s left eye before it progressed to the same stage.

Submissions

34. Following cross examination the parties made oral submissions about whether the proposed surgery should occur.

35. The oral submissions for the plaintiff were in the following terms (T.22.35):

WOODS: Your Honour, there can be no doubt about a number of issues. One is that Baby C has had a traumatic life from the start, due to the difficult circumstances in which she was born at 24 weeks plus four days, and she has required a lot of medical attention since that time. There could also be no doubt that the journey for her parents has been equally difficult, and we can sit here and have nothing but respect for the care and concern that they have for Baby C. And nothing in this application is intended to, in any way, cast doubt upon their concerns for Baby C and for Baby C's best interests.

However, it is submitted that, when looked at objectively, the evidence from the medical practitioners unequivocally supports the proposed surgery. The surgery is designed to give Baby C an opportunity, assessed at 40 per cent, of having sight to the extent that will allow her to navigate. Now, what that means in practice is an ability not to live life in total darkness but an ability to be able to move around the world with an apprehension of the dangers that exist. It won't enable her to be able to read, but it will enable her to be safer and to have some vision.

The risks of the surgery itself are set out in the affidavit material. They are not, in one sense, unimportant risks but they are relatively statistically rare, leaving it, in the sense of infection and [sympathetic] ophthalmia and those types of risks. The prospect of obtaining sight, however, is 40 per cent. And a 40 per cent chance of sight in the context of some other risks of the surgical procedure, which are in the order of one in 3,000 and the like, means the operation it is appropriate to proceed to the operation.

The parents undoubtedly have specific concerns, and they have been addressed in the evidence before your Honour. Those concerns relate to the cumulative effect of procedures and the cumulative effect of the anaesthetic. As your Honour has been taken to, during the course of an objection I made to the evidence, and also the questions I asked P1, there is a detailed hospital note relating to [DR1]’s lengthy consultation with P1 in which issues relating to anaesthetic risk, and particularly in the context of potential neurological damage to Baby C, has been assessed as being negligible and that Baby C has no additional risk factors that put her at greater risk of the procedure compared to any other child in a like position.

So whilst the parents have been told at various points of time over the course of Baby C's life that each procedure does have a cumulative risk, a conclusion that this next procedure is one procedure too much isn't borne out on the evidence. What we have here is a baby, Baby C, who has done particularly well. She had a torrid time at the beginning, and undoubtedly the surgeries which occurred during that torrid time and which are in the context of leading to a decision for palliative care, she's been able to overcome those difficulties.

She has progressed well. She is now stable. That feeds into her ability to undergo the procedure tomorrow. It brings with it the only prospect of some usable sight, which is incredibly valuable, on the evidence. The down sides are very real in the parents' minds, and that is not gainsaid. But the down sides aren't there in the evidence of the medical practitioners and the advice that's been provided to the parents by the medical practitioners. It's clear there's a large team involved. They have all made decisions well, they're all on board at this stage with the decision to proceed.

36. Counsel for the independent legal representative adopted the submissions of the plaintiff and said the following (T.25.34):

MOORE: I adopt Mr Woods's submissions, your Honour. I did, with my solicitor, speak before court with Dr [redacted], who informed both of us that the surgery will be planned for tomorrow afternoon, that he is only one of two doctors who can perform the surgery, and that his team from [redacted] will travel to the [H] in order to perform the surgery if the order is made.

The [redacted] cannot accept a patient as young as Baby C, so that's why arrangements have been made. He originally was consulted some time ago. And with his colleague Dr [redacted] the plan was to operate on Baby C at that stage, with Dr [redacted] doing one eye and Dr [redacted] doing the other eye. But then the decision was made by the treating team that Baby C would move to palliative care, so that didn't occur.

HIS HONOUR: I had assumed that the reason why this proposal has been revived is that the baby has done a lot better.

MOORE: That's right.

HIS HONOUR: And this will have - the timing won't be adventitious. It will be connected to a view that Baby C has recovered her strength and health, whatever the appropriate term is--

MOORE: That's right.

HIS HONOUR: --to a position that minimises the risk that the very operation will have entirely untoward physical consequences.

MOORE: That's right, your Honour. And, as Mr Woods told you, we spoke Dr [redacted] and Dr [redacted], who were the doctors from [redacted], and effectively their opinion was that the risks of the surgery and the associated anaesthesia would not be high enough for them to say no to the surgery, given the benefits that would flow, that the reason is Baby C is much more stable now than when they were treating her, self-ventilating heart is stable, neurologically she is now okay, the blood pressure is okay. Hence much more stable to tolerate the surgery.

HIS HONOUR: Yes. Well, Mr Moore, obviously in matters like this the court does not rely entirely but does rely heavily on views expressed by or on behalf of the independent legal representative, for the simple reason that the court cannot actually inquire personally into these matters. It occurs to me that the decision that the court has to make depends upon a very difficult exercise which involves imagining the difference between blindness and the ability to have sight capable of navigation. And if one then imagines what the difference between those two situations is, how much better is the latter than the former that justifies a level of risk that is suggested by the evidence in this case. That's what it comes down to.

MOORE: That's right. And as I understand it, the evidence is that that ability to have that navigational sight is something that outweighs the adverse effects or the risks associated with the surgery. And that if it is also at the point of complete blindness, that the choice between complete blindness and a risk of 40 per cent to have navigational sight is a risk worth taking and is in her best interests.

37. The oral submissions for the defendants were in the following terms (T.27.18):

McCONAGHY: Your Honour, my learned friend has identified some of the parents' concerns, particularly the cumulative effect of the procedures. This would be procedure number 7, general anaesthetic number 7, for a four month old premature baby. And that they have some concerns in particular in relation to the cumulative effect of the anaesthetic and the possibility of what they describe as setbacks at a time when she is doing better, your Honour.

They have experienced Baby C having failed procedures and having setbacks as a result. That is, in particular they described two failed eye surgeries previously. They described what [P1] referred to as intubation difficulties, [P2] described as an intubation error. They described a septic episode following a procedure and Baby C needing to be resuscitated following a procedure, the second eye procedure.

Your Honour, they also described the fact that she stopped tolerating feeds after the procedures. Her weight at the moment is crucial for her ongoing progression, medical progression. She's not gaining weight but she's able to accept milk, and the parents are concerned that another procedure at this time will set Baby C back again.

Your Honour, the parents have always followed medical advice. That was their evidence. On this occasion they have concerns and have been unable to give their consent. While there would appear to be medical opinion that the benefits of the procedure outweigh the risks, it's the parents' view that currently the child there's no evidence that the child has any neurological damage, and it's the parents' assessment not to risk this with a further procedure.

Your Honour, the parents will have responsibility for the long term care of the child. They will have responsibility for the long term care of the child with any disabilities, and it's the parents' view that not to risk her current situation with a further eye procedure.

HIS HONOUR: For the court to talk about these risks in the presence of the

parents is inevitably stressful for them, and I am very conscious of that. When it comes down to it, a decision not to authorise the operation is the choice of inevitable blindness as against a possibility of some useful sight, no doubt a level of sight which would be regarded as extremely inadequate by ordinary sighted people. I am caused to wonder whether any judgment that I might make, as to the difference between complete blindness and a level of sight that sustains navigation, is fanciful. I don't know how a sighted person rationally does that. But I'm inclined to think that any of us who were given that choice would regard the level of sight that is at least possible, as being hugely advantageous over blindness.

McCONAGHY: Your Honour, the parents, I would say, would agree with you that some sight is definitely better than blindness. But in their view, they have been told by doctors in the past that, with every further surgery, Baby C risks developing neurological issues, developmental delays, cerebral palsy, and at present there's no evidence of that and they have a fear that with ongoing procedures that risk increases. And in their views, those types of disabilities are their fear of those types of disabilities is significant.

Consideration

38. It was not in dispute between the parties that the parens patriae jurisdiction of the Supreme Court is well established and that the Court has the power to order the surgery for C in the present circumstances: see Royal Alexandra Hospital for Children v J [2005] NSWSC 465, Re Paul [2008] NSWSC 960, at [2]; Re Bernard [2009] NSWSC 11, at [15] - [17]; Director-General Department of Community Services; Re Jules [2008] NSWSC 1193, at [7] - [8] and Re L 2 Fam CR (UK) 524.

39. In Secretary Department of Health & Community Services v JWG & SMB (1991-2) 175 CLR 218 (Marion’s Case), the plurality stated the following, at 259:

[T]he parens patriae jurisdiction springs from the direct responsibility of the Crown for those who cannot look after themselves; it includes infants as well as those of unsound mind. 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.

40. In Marion’s Case, Brennan J explained the underlying basis for the jurisdiction, at 266:

The value which underlies and informs the law: each person has a unique dignity which the law respects and which it will protect. Human dignity is a value common to our municipal law and to international instruments relating to human rights. The law will protect equally the dignity of the hale and hearty and the dignity of the weak and lame; of the frail baby and of the frail aged; of the intellectually able and of the intellectually disabled. ...Our law admits of no discrimination against the weak and disadvantaged in their human dignity.

41. The Court must, in exercising the parens patriae jurisdiction, ultimately consider the welfare and best interests of the child: see Re Bernard [2009] NSWSC 11 at [17]; Re Paul [2008] NSWSC 960 at [3]; Royal Alexandra Hospital for Children v J [2005] NSWSC 465 at [50]; Re Jules [2008] NSWSC 1193 at [15]; Minister for Health v AS & Anor [2004] WASC 286 at [19] - [21]; see also The Sydney Children’s Hospital Network v X [2013] NSWSC 368 at [10].

42. The position as it appeared to the Court at the end of the hearing can be stated starkly. If C was not given the benefit of the operation, she would definitely be blind for life. If she had the operation, she had about a 40% chance of gaining navigational vision in one eye.

43. C had experienced a tragic medical history to the point where she was moved to palliative care but she rallied and recovered to the point where her doctors came to reconsider the potential benefit of eye surgery that optimally would have been performed earlier but was abandoned as a result of the decision to place C in palliative care.

44. The various doctors who have been treating C acknowledged the risks of surgery that have been set out above, but as I understood the evidence, the firm collective view of the doctors including the eminent surgeon who was to conduct of the surgery was that the potential benefit to C’s quality of life by reason of the possibility that she would gain navigational vision far outweighed the known risks, and that the proper medical course to take in all of the circumstances was to carry out the proposed surgery on C.

45. C’s parents declined to give their consent to the operation being carried out, and they maintained that position during the hearing.

46. It was absolutely plain that the position taken by P1 and P2 was genuine and considered and they had taken into account their parental responsibility for C’s health and future, and made their decision in the light of C’s medical history and what they saw to be the unreliability of medical assessments that had been made in the past in relation to C’s condition and the likely effect of various medical procedures that had been recommended and the adverse consequences that C had suffered as a result of the procedures to which she had been subjected.

47. As I observed during argument (as recorded in the extracts from the transcript set out above) the present case required the Court to make a judgment that required the Court to imagine the difference between two different medical circumstances, being complete blindness and an ability to see through one eye at an navigational level, which was described during the hearing as an ability to count one’s fingers held out before one’s eyes. I have used the word “imagine” advisedly because in truth the process of imagination is beyond the capacity of a naturally sighted person.

48. The Court was required to make an immediate judgment based upon its assessment of the evidence before it, which was in the circumstances unavoidably incomplete, and could not be tested in the usual way that would happen at a hearing of proceedings that had been conducted without the limitations imposed by dire urgency.

49. That urgency arose out of what I understood to be the firm medical view that the passing of time had seen C permanently lose her sight in her right eye by a process likely to be imminently repeated in her left eye without the intervention of the surgery whose prospects of success were rapidly diminishing.

50. Ultimately, I was persuaded to make the order set out above authorising the H to carry out the surgery on C for three reasons. The first was my assessment that C had the benefit of a highly-qualified multi-disciplinary medical team whose strong view, based upon the objective facts and circumstances outlined above, was that the proper medical course was for the surgery to be undertaken, and the potential benefit to C substantially outweighed the known risks, so that the performance of the operation was the proper medical course in the circumstances.

51. The second reason was that, as I understood the medical evidence, it was to the effect that the particular concerns that were operative in convincing P1 and P2 to withhold their consent to the operation were unfounded. The medical opinion was not to the effect that there were no risks, but the particular surgery that was proposed was normally well-tolerated, C’s condition was relatively stable, and there was little neurological risk or anaesthetic risk. My understanding of the evidence was that the doctors had carefully considered the possibility of C suffering the recurring consequences of medical procedures that she had experienced earlier in her life when she was even more frail than at the time of the hearing.

41. Thirdly, while I understood that P1 and P2 maintained their refusal to consent to the operation taking place, they were not utterly opposed to it but could not bring themselves to give their consent given their experiences and their own judgment concerning C’s life prospects, so that the ultimate decision might fall for determination by a third party.

42. I placed the most serious weight and respect on the solemn right of parents to have the primary responsibility to make life and death decisions in respect of the health of their children, but ultimately that responsibility is not absolute as the existence of the Court’s parens patriae jurisdiction attests.

43. Ultimately, accepting that the responsibility for making the decision was mine, I did my best to imagine the difference in life’s opportunities offered by the two courses that I had to choose from, and on the basis of my own imagination decided that, in the light of the considerations set out above, the prospect of C gaining the benefit of navigational sight was so much more preferable than inevitable blindness to warrant the Court giving authority to the H to carry out the operation on C.

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Amendments

22 November 2018 - Typographical amendments [38], [40], [53] ; case added to coversheet

Decision last updated: 22 November 2018