EQ, Re [2016] EWHC 3418 (Fam)

Case No FD16P00687[2016] EWHC 3418 (Fam)
IN THE HIGH COURT OF JUSTICE
FAMILY DIVISION
Venue Royal Courts of JusticeDate Wednesday, 14 th December 2016
Before
MR. JUSTICE FRANCIS(In Private)
IN THE MATTER OF :
Re: EQ
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MS. SOPHIA ROPER appeared on behalf of the Applicant.
MS. G. MELLON appeared on behalf of the Respondent.
MS. G. HONEYMAN appeared on behalf of CAFCASS.
J U D G M E N T
[1]This is an adjourned hearing. The matter came before Mrs. Justice Parker last week and she adjourned the matter then and was unable to deal with it today, so it falls for me to decide.[2]The case concerns the possibility of medical treatment for a baby, EQ, who was born on 13th September of this year and so is some thirteen weeks old. She has been present throughout the court proceedings this afternoon and I think it is fair to say that, perhaps until now, she has been one of the quietest people in the court.[3]This case arises out of a disagreement between the Moorfields Eye Hospital NHS Foundation Trust and EQ’s mother, who is the first respondent, as to whether EQ should undergo surgery under general anaesthetic to treat her bilateral congenital cataracts.[4]The surgery could have taken place earlier than now had the matter proceeded last week, but, for reasons which are really of little concern now, the matter was adjourned last week, not least because it has been very helpful for the mother to have been able to file her statement and for a Guardian to have intervened and represented EQ as she has.[5]The background is set out very carefully in the position statements that I have. I am giving judgment now at almost half past five in the afternoon, having heard the case throughout the day and I am alive to the fact that the applicants need to know my decision - they said half past five, but they will have it I hope within ten/fifteen minutes if not at half past five.[6]Of necessity, I cannot set out the facts and matters in the same level of detail as I would have been able to had I had more time to prepare this judgment. But I want to reassure, in particular, the mother and her mother (who I will refer to as the “grandmother”) who have both been in court, that I have given this case very careful attention. I pre-read, as I was invited to, when I took the papers home yesterday and again this morning as we did not sit until eleven o’clock. So I do not want anybody to be concerned that we have been rushed into a decision for we have not.[7]EQ (as I have said) is now some thirteen weeks old. It was not long after her birth that her GP noticed that she was developing cataracts in both eyes. The date when the cataracts were first noticed is not known. What we do know is that they were not reported by the paediatrician who discharged her from hospital after birth and they were noticed by the GP not very long after that on 1st October 2016. It is common ground, therefore, that the relevant date for the development of the cataracts is some date between her being discharged from hospital after birth and 1st October 2016. The timing of all of this is, as I shall come onto in a moment, highly relevant.[8]EQ attended Moorfields on 1st November 2016 with her mother. As I say, that is when she was diagnosed. The diagnosis was confirmed on 8th November 2016 at a further appointment when EQ was seen by a Consultant Ophthalmic Surgeon, Miss Adams, and also a Consultant Paediatrician, Dr. Oluonye.[9]I have read the written evidence of both of those consultants and I have taken the oral evidence of Miss Adams via a telephone link this afternoon when she gave evidence for approximately two hours. The court is extremely grateful to her for interrupting her busy schedule to give that evidence. She also gave evidence before Mrs. Justice Parker last week and we have a transcript of that evidence.[10]The mother, as I have said, opposes the treatment of these cataracts. She is supported by her mother. I am told that the father of EQ (from whom the mother is separated) is supportive of the mother’s position, but there is no evidence either way other than what the mother has said about that. But the relevant parties here, of course, have been the applicant on the one hand and the mother and the maternal grandmother on the other and the Guardian.[11]The surgery can be performed at eight-thirty tomorrow morning if I say it should be. The common practice, as I understand it from the evidence I have read, is that, when one is removing cataracts from each eye, there are two separate operations in order to reduce the risk of infection. So the plan would be that there would be one operation tomorrow morning and another on Monday of next week.[12]Although she opposes the surgery, the mother has given the clearest evidence on oath to us this afternoon that she would recognise the need to co-operate with the decision that this court makes and that, if my decision is that the surgery should go ahead, she will co-operate fully with both the need to ensure that EQ is at hospital by the given time which is seven-thirty in the morning and also that EQ would not have any fluids, I think, for a period of four hours. So the mother will co-operate with all of that advice that she has received from the hospital and she would be supported in that by the maternal grandmother. Indeed, I believe it is the maternal grandmother who would be able to drive her early tomorrow to Moorfields Hospital if that is the decision.[13]I want at this point to pay tribute to the mother and to the maternal grandmother for the way that they have conducted these proceedings. They have both given evidence calmly and clearly and without undue emotion and without any bitterness, although I see there is a background in this case of the mother feeling that she was not at all times listened to properly by Moorfields. I make no judgment on that because it is not necessary for me to do so. I see that Moorfields have spent a lot of time on this case as, indeed, Miss Adams has this afternoon. These are difficult cases.[14]I am completely satisfied that the objections that the mother and the maternal grandmother puts forward are founded completely in their desire to do what is best for EQ. My test is to apply the best interests test, what is in EQ’s best interests. I have no doubt that that is the test that the applicant Trust have applied and I have no doubt that that is the test which the mother herself and the maternal grandmother in turn applies. It is because there is no ability to agree between the applicant and the mother as to what is in EQ’s best interests that I have had to become involved and have to make a decision for them.[15]There is no reason to suppose that the mother is other than an excellent mother and everything I have read suggests to me that EQ is well cared for in a happy family environment. Although I do not know the details of the wider family, I am told that there is a large wider family of aunts, uncles, cousins and all sorts of others within this family who give support to EQ.[16]The mother was born with the same condition that EQ has and there is no doubt that it is her experience that is at the heart of her objections. The mother was operated on when she was only five days old. She, sadly, developed glaucoma and other complications and she has had a very difficult life as a result of it. In saying that, the mother also plainly leads a totally fulfilled life and I would not want her or anybody in this court to think that I was starting from a proposition that her life - because she is blind - is any worse than the life of a sighted person. Certainly, I do not look upon her as somebody with a disability. The fact is that sight is one of the five senses with which most people are blessed and, if you were to ask anybody which of those five senses they thought of as being the most important - and I am certainly not going to make any judgment on that - my expectation is that sight would be put at the upper end of that list rather than at the lower end of that list.[17]The mother has, as I have indicated, not only signed a statement but she has given oral evidence. In paragraph 5 of her statement, she refers to the fact that she was born with the same condition as EQ. She says:
“My mum was told that I should have surgery immediately and she was given a number of statistics advising that the earlier surgery was carried out the better. She went along with this and I had the operation at around one week old. I developed a number of the conditions that EQ is at risk of developing and I am therefore in a strong position to understand not only the conditions themselves, but the effect that these are likely to have on EQ’s life, freedom and independence.”
[18]There is a lot more evidence of a similar kind, but, without reading out any more than is necessary to set out the background and the reasons for my judgment, I refer to what the mother says in para.17 of her statement where she says:
“Because I do not have the protection of a lens on my eyes, I cannot go outside in cold or windy weather. If I get an eyelash or debris in my eye, I cannot get it out and have to wait for it to come out naturally. It can take around three days for an eyelash to come out of my eye and I can describe that pain as being as painful as labour. I do not want my daughter to go through this.”
Those are powerful statements indeed and I do not think that anybody would want EQ to go through those sufferings either.[19]The mother also says that she does not think that her sight impairment prevents her from leading a normal life and she says that she has no doubt that EQ will lead a free and independent life without the risk of surgery. She refers also in her statement to the risk of blindness later. It is not for me or anyone here to comment on what a normal life is. I accept what the mother says in her statement. It is interesting, however, in this context to note what the mother told the paediatric matron, Mally Scrutton, whose statement I have in the bundle. In para.16 of her statement, she says:
“I asked the mother whether she would consent to surgery and allow EQ to have an anaesthetic if it could be guaranteed that there would be no complications. I stressed that we cannot ever promise this. [The mother] and her mother said that they understood this. [The mother] gave this considerable thought and said that she would probably give consent if it could be guaranteed that there would be no complications.”
In other words, the mother would like EQ, in a perfect world, to have sight. There is no doubt at all, as I have said, that the mother’s view is greatly affected, as one must recognise and respect, by her own life experiences.[20]One of the biggest concerns that has come over during the course of the evidence, both written and oral, on behalf of the mother is the prospect of leaving the eye without the protection of a lens. Miss Adams, the Consultant, to whom I have referred, was very clear that the mother has been exceptionally unlucky in her eye degeneration (if I may call it that) and her loss of sight and all the problems that she has had. Miss. Adams’ evidence was that is exceptionally rare.[21]Miss Adams said that the lack of protection of the eye after surgery only lasted during the immediate aftermath of surgery and that, once the stitches have healed, then the eye is protected. These would be soluble stitches and the eye would therefore be protected as much as if there had not been surgery after a period of a short number of weeks. Moreover, in the early years of her life, EQ would wear glasses because of course she would not have a lens if the surgery was carried out. In fact I asked Miss Adams myself, if you do not have a lens, how can you see? I apologised for asking what may have been an ignorant question, but the answer was of course that you see because you have a lens in the form of either glasses or, in due course, contact lenses. Miss Adams made it clear that, in due course, EQ would herself be able to elect to wear daily disposable contact lenses which would be a further layer of protection for the eye.[22]So I find on the medical evidence that is before me that the concern of the mother about not having protection for the eye because the lens is removed, although founded in an honest belief is a belief based on her own experience and not on medicine or science. I am quite clear that the evidence of Miss Adams is that the eye will be protected once those early short number of weeks have passed and the stitches have dissolved and the wound is healed.[23]I have been taken to a lot of statistics in this case and, at the end of the day, the job that I have to do is to weigh potential risks against potential benefits. Timing, as I have indicated, is central to this case. There is a very important graph at p.100 of the bundle which deals with the critical period for a dense unilateral congenital cataract, which is the type of cataract from which EQ suffers. It shows the importance of addressing these cataracts at an early stage and the way that it has been put to me in the evidence is that if, at an early stage, there should be no intervention, the brain will fail to learn how to see.[24]The graph shows that after a period of what has been called the “optimal number of weeks”, which is about ten weeks after the cataract develops, the expression used by Miss Adams was “the graph falls off a cliff”. It is imperative that the surgery, if it is to be carried out, is carried out within this critical window. Now I have already indicated that the cataracts were diagnosed officially on 1st October, the diagnosis having been confirmed on 8th October. We also know that EQ was born on 13th September, so on a date shortly after 13th September and definitely by 1st October these cataracts developed. If we take the optimal period as being ten to twelve weeks, we are absolutely in or towards the end of that optimal period already. A very unhappy outcome indeed in this case would be for EQ to have the operation at a time when it is frankly too late for there to be the best possible outcome, so timing is central to this.[25]The mother’s fallback position developed this afternoon by her counsel, Ms. Mellon, has been that, if I am not minded to dismiss the application completely today, I should adjourn the position so that further tests can be carried out. I am completely satisfied that that is not the right course to take, that I have to grasp the nettle today and either order the surgery or dismiss the application. I say so for a number of reasons: the first is that the tests that the mother now through her counsel says should be carried out, one of them, at least, could be carried out tomorrow morning prior to surgery - that is the angle of the drainage in the eye. The other test which involves a scan and placing a contact lens over the eye may or may not be able to be carried out tomorrow morning prior to surgery.[26]Miss Adams made it clear that, if she found that there was pressure on the eye of the kind which could not be relieved by the removal of cataract, then she would not necessarily take the step tomorrow, even if I authorised it, of having the surgical procedure tomorrow. But the course which Ms. Mellon is urging upon me as, as I have said, her fallback position. First of all, it would delay matters for at least another week. Secondly, it would expose EQ to a further operation and further anaesthetic, which is never to be desired. Whilst the mother, sensibly, in my judgment, discounts the risk of anaesthetic as being one that she is prepared to tolerate, it is not in my judgment appropriate to expose EQ to the possibility of three general anaesthetics within a short period of time which is one of the possibilities that could happen if there was this interim investigation which has to be done under general anaesthetic, followed by possibly the two operations. With a cataract, it is inevitable that, if there is going to be one operation, there is going to be two unless something completely unexpected were to happen. So I do not adjourn this matter today; I am going to deal with it.[27]The other issue I have to mention is that there is no certainty at all that Moorfields could carry out the cataracts operations if I was to adjourn it, hear it again in a week’s time and then make an order that the surgery take place. A week from now the date will be 21st December and the Christmas holidays would be almost upon us. Miss Adams made it clear that Moorfields did not carry out routine surgery during the Christmas period and, although this is immensely serious surgery to all of us in this court, it does for these purposes come under the heading of “routine” because it is not emergency surgery.[28]I need to deal briefly with some of the statistics to which I have been referred. In her written evidence, which she confirmed on oath, Miss Adams said as follows:
“Taking into account the above [various matters that she had set out] and in relation to EQ, if the operations were to take place on 12th and 15th December, as proposed [it would now be 15th and something like 20th December, but I did not understand her to be saying the test today would be different by the delay of three days], I consider that she has a 66% chance of achieving an outcome of 6/18 - that is half of normal vision by the age of six years.”
She described what “half of normal vision” meant in a way that we, as lay people, would understand, which is “It would mean that you would be able to see half of the optician’s chart and half of the optician’s chart is a very considerable amount of sight indeed”. She went on to say there is a 10% chance of EQ developing glaucoma and a 70% chance of strabismus (that is a squint) by the age of six years.[29]There was a lot of cross examination of the Consultant about the glaucoma issue. I do not think that anybody has paid very much attention to what has been referred to as Strabismus (a squint), but I am very concerned here with the evidence about glaucoma because it is central to the mother’s thinking. There is a table in p.35 of the bundle, which is an exhibit to Miss Adams’ statement. It sets out, based on research, the risks of post-operative glaucoma. The table shows that the risk of glaucoma developing to people post-operatively is 11.7%. That is 11.7% of people who have had this operation will develop glaucoma post-operatively and 1.3% of people will suffer from retinal detachment.[30]There is other research which we have looked at as well. Miss Adams set out in her statement reference to something which has been called the “IATS Study”, which is an American study. This study showed that, at five years after surgery, 20 of 114 children - that is 17% - had developed glaucoma and a further 16 children were classified as “glaucoma suspect”. It continues: “This means that 31% of children either had developed glaucoma or were at high risk of developing it”.[31]It is difficult to reconcile the conclusions of the IATS study with the conclusions of the British study to which I have referred. One difference, it seems to me, is that the British study which was 11.7% is those people who have developed glaucoma whereas the IATS study is those who have developed it or who have a high risk of developing it. Ms. Mellon has urged on me to take into account that people of the same ethnic group as the mother, and she described herself ethnically as Afro-Caribbean, are more predisposed to glaucoma than other ethnic groups and that may have skewed the statistics. I cannot work on the basis of supposition; I have to work on a basis of evidence. There is no evidence that there was a higher proportion of Afro-Caribbean people in the IATS study than there were in the British study. Indeed, such research as I have briefly been able to carry out shows that in fact there is a higher proportion of Afro-Caribbean people living in Britain than there are in the United States of America.[32]The Consultant, Miss Adams, did concede that glaucoma was more prevalent in Afro-Caribbean people than in Caucasian people, but she did not say and nobody has been able to say whether or not Afro-Caribbean people are at a greater risk of developing glaucoma post-operatively to the removal of cataracts. I have to work on the evidence that I have placed before me and that evidence is that the risk of developing glaucoma, according to the evidence of the British study, was 11.7%. That is a significant risk, but I have to set that against the benefit that the 66% chance of achieving 50% vision and I have already described what that 50% vision is.[33]I have been carefully taken to the relevant legal principles in this case and I am grateful to all counsel for the care that they have put into the position statements that they have given me. The test, of course, is what is in EQ’s welfare. Her welfare is the paramount consideration of the court, that basic proposition of course from s.1 of the Children Act 1989. I have read the cases which tell me that I must apply the patient’s best interest principle. I do not refer to EQ as “patient”, I refer to her simply as EQ because I accept entirely what the mother says that, in this case, unlike some of the cases which appear in the Law Reports, she is not to be regarded in any sense as a “patient”.[34]I have been taken, quite properly, to the ten principles enunciated by Mr. Justice Holman in the NHS Trust v. A and also in the NB case. I need just to go through those before I say what my decision is: i. “As a dispute has arisen between the treating doctors and the parents, and one…[party has] asked the court to make a decision, it is the role and duty of the court to do so and to exercise its own independent and objective judgment.” I make it absolutely clear that I am not in any sense when I give my decision imposing my opinion. I am exercising, as I am obliged to do as a Judge in this court, my independent and objective judgment based on the evidence that I have as to what is in EQ’s best interests. ii. The right and power of the court to do so only arises because EQ lacks the capacity to make a decision for herself because, of course, she is a tiny baby. iii. The matter must be decided, as I have said, by applying an objective approach. That is the best interests of EQ. iv. Used in the widest sense and to include every kind of consideration capable of impacting on the decision and these include medical, emotional, sensory and instinctive considerations. v. I also bear in mind very much in this case the effect which it will have on the mother and her family if EQ does have this operation. Whatever the medics say, the fact is that this mother will worry about EQ if the operation goes ahead and she will do so because of her own life experience. Therefore, I am bound to take into account the effect that it will have on her as a mother. Whilst I have described her, correctly in my judgment, as apparently an excellent mother, she will find mothering more difficult if she is worrying all of the time about the possibility that EQ may develop difficulties following surgery. Against that, I take into account that I am sure that this is a mother who would be very pleased if she found that EQ has the gift of sight. vi. It is impossible to weigh these considerations mathematically. I have to do the best balancing exercise that I can working out where the final balance of interests lie. I am not concerned with point vii of Mr. Justice Holman’s points because that was a case about the prolongation of life, where mercifully we are not dealing with such an issue here. That applies also to point viii of his ten points. ix. Mr. Justice Holman says that all these cases are very fact specific. They depend entirely on the facts of the individual case. My failure at what is now 17.55pm to set out all of the facts that have been put before me does not mean that I have not had them at the front of my consideration. I have taken into account all of the facts that have been put before me. x. I have taken into account the views and opinions of the doctors and of the mother and, in turn, of the maternal grandmother. I have considered those carefully. This is not a question of it being the wishes of the mother, it is the opinions of the mother and they bear heavily on my judgment.[35]Having considered the matter carefully, as I have said, I have come to the very clear conclusion that it is in EQ’s best interests to have this surgery. I know that this will come as a blow to the mother. I find that the mother is unable to exercise objectivity (and I do not say that as a criticism of her) because of her life experiences because of the difficulties that she has had all of her life with her own eyes. It is clear to me from what I have heard that medical science has developed a very long time in the two decades or so since the mother had her own surgery. First, it was plainly wrong, although the doctors at the time could not have known it, that the mother had surgery at such a young age of five days old. The clear evidence now is that there is this window to which I have referred where the chances of a good outcome are far greater.[36]I take into account, secondly, that the mother has had extraordinarily unlucky complications following her surgery. She has had the problems that she referred to in her statement and that she gave evidence about. We must now all hope that medical science has advanced to a stage and that the opinions of the doctors are right and that great benefits can be achieved for EQ in having this surgery. I am not in any doubt at all that this is a benefit that there is a far greater chance here of reward and benefit to EQ than there is risk. I have tried my best to weigh up the risks and to set them out.[37]I end by saying that I hope with all my heart that this will be a success and I hope to hear of good news in the weeks to come. The mother has indicated that she will take all steps that she can to protect her baby from all of the complications that can arise. She will, with help from her own family, administer the drops as is necessary. I am confident that she will go on loving her baby just as much and do everything that she can for her to make this have the best chance of a good outcome.