FAMILY DIVISION
Royal Courts of Justice Strand, London, WC2A 2LL |
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B e f o r e :
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In the matter of E (A Child) (Medical Treatment) |
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Mr Barry N Speker (of Sintons Law) for the second respondent The Newcastle Upon Tyne Hospitals NHS Foundation Trust
Ms Elspeth Thomson (of David Gray Solicitors LLP) for the third respondent E
The first respondent (E's mother) was neither present nor represented
Hearing date: 8 July 2016
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Crown Copyright ©
Sir James Munby, President of the Family Division :
"General anaesthetic: minimal
Bleeding: low risk. Bleeding can be a problem but brisk dangerous bleeding is very rare.
Infection: This is a significant risk. I would estimate somewhere in the region of a 15% chance of a cranioplasty having to be removed because of infection.
Transient neurological impairment: I'd estimate this risk at around 10%
Permanent neurological impairment: I'd estimate this risk at around 5%
Death: Overall, I'd estimate this risk at 1-2% associated with the cranioplasty operation."
"The defect is approximately 10 x 12 cm. The brain is being protected primarily by his scalp. His scalp is not especially strong, particularly against penetrating injuries but in a normal functional family environment the risk of an injury arising because of a craniectomy is extremely low."
In answer to the question What are the advantages of [E] having a plate inserted to cover the deficit? In particular can you comment on the need to do this to protect the brain, Mr Mitchell said this:
"The principal advantages are cosmetic and psychological. As far as brain protection is concerned, the risks of the cranioplasty operation are larger than the risks associated with a craniectomy in a normal family environment."
"Why is the preferred option a titanium plate rather than a titanium mesh or other material being used?
There is no particular medical reason to prefer one method over another. Titanium sheet cranioplasties are thinner than mesh which makes it easier to fit at his age the difference is marginal.
What is the cosmetic result from a plate?
Generally pretty good. As a titanium cranioplasty will not grow with his head it can lead to an asymmetric head contour in later childhood. This is unlikely to be a major cosmetic issue as it is hidden behind the hairline and revision cranioplasty is always an option if desired.
Is there a time frame within which the plate should be inserted? What are the advantages and disadvantages of inserting a plate soon as opposed to at a later date? How long can plate insertion be delayed for it to be still a useful intervention?
There is no particular time limit. If the operation is delayed beyond about five years, its benefit becomes increasingly marginal as over that time frame the skull tends to reform naturally.
At what point and why might the plate need to be changed?
Unless the plate became infected it is unlikely that it would ever need to be changed. Reasons the changing it include cosmetic to make the head more symmetrical as growth occurs, and sometimes plates loosen and start to move which can be painful.
Would the risks be the same for revision of the plate as they were for the original insertion of the plate?
Yes
Please describe what is likely to happen to if no plate is inserted. How will the bone grow back? How long will it take? What will the functional and cosmetic implications be?
When we did the craniectomy the tissue layer that forms the bone was dissected off the bone flap and left in place. In time this layer generates new bone. I would expect him to have substantially complete bone coverage of the defect between 5 and 10 years after the operation to remove the bone. There are no particular functional implications of allowing this to happen unless he were to develop symptoms associated with alternate bulging out and sinking in of the scalp before bone formation occurred. This can be associated with a syndrome known as the syndrome of the trephined. In this syndrome postural changes, such as from lying to sitting to standing can provoke brain shifts that lead to headache, sickness or transient functional changes like vertigo or drowsiness. In reality though this syndrome is rare, particularly in children who are not tall enough to have large postural hydrostatic pressure shifts. There is a theory advanced by some rehabilitationists that a global functional improvement is seen following a cranioplasty but this has yet to be demonstrated with hard evidence."
"Does wearing a helmet reduce the risk of damage to the brain if a plate is not inserted?
Helmets give significant psychological comfort to carers but their impact on injury rates is minimal because the kinds of injuries that people with a craniectomy are particularly prone to are so rare. They are largely restricted to penetrating head injury such as from arrows darts or airgun pellets. And these are rare in the UK.
Please can you describe your experience of the effect of plate vs no intervention on the perceptions of the child and carers and the social interaction of others with such children and the effect this might have on them with regard to development?
The plate is not likely to make much difference to the child's own perception. The cosmetic defect will largely be covered by hair, which can be kept long, and by the time the child starts become self-conscious it is likely the natural bone formation will be well underway. The larger effect is likely to be on social interaction and the psychology of adult carers. If the condition is explained to other children, they are likely to react with cruelty and revulsion rather than understanding and adults are likely to react with overprotectiveness. These factors clearly can have an effect on the child's development and are the usual reason for doing cranioplasties is in this age range.
In the previous discussion you mentioned the fact that the deficit was behind the hairline helped with cosmetic issues and that the fact that a dural matrix was placed over the incisions in the dura at the initial operation reduced the infection risk. Please could you enlarge upon these issues for the court and their relevance to [E]'s care.
The craniectomy was deliberately fashioned behind the hairline and above the temporalis muscle to minimise its impact on cosmetics and jaw muscle function. The dura was opened at the time of surgery to allow more room for brain swelling. The openings in the dura were covered with a synthetic dural material. The reason for this is not to reduce the infection risk but to make dissection of the plane in which to insert the cranioplasty easier and thus reduce the risk of brain injury during a subsequent cranioplasty operation. These measures are intended to minimise the impact of a cranioplasty if he were to have one, and to minimise the cosmetic impact of the craniectomy while waiting for a cranioplasty, or alternatively, if it is decided that he should not have one."
"The decision on whether to have a cranioplasty is not one that I make personally. My role in this is to advise parents and carers of the issues and risks involved, and to perform the operation if they decide to have it done. Craniectomy in this age range is relatively rare. Traditionally, the approach was to perform a cranioplasty by replacing the child's own bone flap but since the aftermath of the Alder Hey scandal, we have not been able to retain human body parts for this purpose. Artificial bone cranioplasties are available and we believe that they do remodel a child's head grows but unfortunately the material from which they made is relatively fragile and is not strong enough to be used until the skull is of a substantial thickness, usually around the age of seven. These are therefore not available for someone of [E]'s age. This leaves titanium as the only option, and that has the problem of not growing with the child.
There is no room for dogma about whether or not it should be done but on balance most people do end up having the operation and the reason has more to do with psychology and social interaction than it does with neurological function."
"This 23 month old child now appears to be making good progress physically, behaviourally, emotionally and developmentally. He appears very settled in his current placement which is appropriately nurturing.
The major health issue to be resolved is whether [E] should have a titanium plate placed over the deficit in his skull. It is Mr Mitchell's opinion that such a plate would offer more protection to the brain, particularly against penetrating injuries. However, it is his opinion that the risk of injury arising because of the craniectomy remains extremely low if he is in a normal functioning family environment. It is Mr Mitchell's opinion that the principle advantages of such a procedure are cosmetic and psychological. Such a plate might need to be changed in the future as [E]'s head grows.
There are however significant risks associated with this procedure, which in Mr Mitchell's opinion include a 1-2% risk of death, a 5% risk of permanent neurological impairment, a 10% risk of transient neurological impairment and a 15% risk of the plate having to be removed because of infection.
Although I fully acknowledge that it is the court's decision as to whether this procedure is in [E]'s best interests and I am not a neurosurgeon, at the current time in the current optimal home circumstances, it is my clinical opinion based on all the sources of information that have been available to me, that the risks of the procedure outweigh the benefits."
"to assist the Court in reaching a decision as to whether consent should be given by the Court in the child's best interests to the carrying out of a titanium cranioplasty at this stage or whether the surgery or the decision to perform it should be deferred."
He went on to comment that "The observations, views and assessment of the [guardian] are particularly relevant." He submitted that:
"The decision is one to be made in the best interests of the patient in the widest sense including all relevant considerations medical, emotional and sensory. This includes the impact upon [E] of the current appearance of the head, and how this can affect his life, his interaction with others, his prospective long term placement."
"Ultimately the final decision rests on whether there is a need medically for this procedure."
"The short answer to this is there is no reason why this has to be carried out now and therefore the decision ought to be left to whoever is determined to be the full time carer of [E]. That decision is likely to be in mid October 2016. There is no clinical reason it would appear why the surgery needs to be performed before that time. The following observations are made:
a. [E] is currently thriving;b. There are no issues raised by his carers from his perspective to the continuation of him wearing his protective helmet;c. The risks associated with the procedure may in fact materialise and if they do then it may become significantly more difficult to find the right carer for [E]. He deserves to have every chance to be claimed;d. The decision is such a significant one it ought to be taken by the person who claims him and will be his parent which is not likely to be either of his natural parents; ande. [E] has suffered very significant harm and is continuing to make a good recovery from his trauma. One can only speculate at this stage prior to the court determination whether the ill-treatment, if that is what it was, began in December 2015. He ought to be spared what is likely to be traumatic surgery which carries risk until he has further recovered and settled in what will be his long term placement, if that is the decision which is then taken."
"[E] wears a soft protective helmet through the day to ensure this comparatively fragile area of his head does not become damaged during his normal activities [His] foster carers are caring for [him] extremely well and he presents as being very confident and physical with them both [They] have commented that [he] now interacts well and in their opinion shows an encouraging level of resilience [He] has made physical and emotional progress, he is dextrous and shows no unsteadiness or 'clumsiness', he walks and runs around confidently [He] does not appear to be troubled by his head in any way. However when he goes to play areas, other children are apparently inclined to stare at his head protection and adults regularly ask [his foster carers] why he has to wear the helmet. They simply say he has had an operation. [They] report that they treat [his] head gently and have a soft brush for his hair, but they do not report feeling anxious about touching his head and he regularly has his hair washed with no difficulty At my request [his] helmet was removed for a short time when I visited him within his foster placement. [He] rapidly tried to replace his helmet and is clearly now used to wearing this through the day. [He] apparently sleeps very well at night when his head protection is removed. When [he] was in hospital I observed him reaching up to where a patch covered the missing piece of skull, however he does not now seek to touch his head and does not appear to experience any discomfort during his normal play or other interactions."
"[The male foster carer] would feel more comfortable if a plate was placed to seal [E]'s head. [The female foster carer] feels that she would not want to put [E] through any further pain or discomfort for a primarily cosmetic reason. She fears the emotional impact on [E] of further surgery and is aware that surgery is not without some risk as well as necessitating further surgery in the future when his head grows. [She] does not consider that potential advantages outweigh potential risk to [E]."
" The risk associated with the operation
The risk to [E]'s physical health of not having the operation
The risk to [his] emotional and psychological health, both directly and as it impacts on his carers, of not having the operation
The advice from Mr Mitchell that there is no immediate time imperative for the operation
The impact on potential future family finding."
"those who are to be entrusted with the long term day to day care of [E] as he grows up should be able to have an input after interacting with him regarding their consideration of the various options for managing [his] health needs."
"The Children's Guardian has considered the risks and benefits associated with inserting a plate in [E]'s skull to cover the deficit, and has identified the following factors as being significant.
a) Mr Mitchell states the principal advantages of the procedure are cosmetic and psychological. As far as brain protection is concerned, the risks of the cranioplasty operation are larger than the risks associated with a craniectomy in a normal family environment.
b) Mr Mitchell advises that there is no particular time limit for inserting a plate although if the operation is delayed beyond about five years, its benefit becomes increasingly marginal.
c) The impact on [E]'s emotional and psychological health of not having the surgery at this stage
i. he will continue to wear his helmet when out and about (this looks similar to a rugby skull cap) which is likely to attract comment and observations
ii. his carers may feel more protective and "treat him with kid gloves"
iii. his head will be uneven which could attract unwanted reactions in others
d) The impact on potential future family finding; findings are yet to be made about the causation of [E]'s injury and it would be premature to reach conclusions about long term planning but one of the options which may be considered is adoption. Whether or not [E] undergoes surgery now could affect family finding in the following ways
i. it may be easier to identify a family for [E] if his cosmetic appearance is improved through surgery
ii. some potential adopters may be deterred by having to assume the responsibility for making a decision about future surgery
iii. future adopters could be dismayed that a significant yet not urgent decision had been made about "their child" without taking into account their views.
The Children's Guardian believes that the right family for [E] would not be deterred by i. or ii. His future carers will be caring for him in the full knowledge of his medical history and the right carers will be able to manage these issues."
"a decision about whether or not to insert a plate should be delayed until planning for [E] is clearer. If [he] is to be placed for adoption the decision on a cranioplasty operation should be taken by his adoptive parents. On the basis of the medical opinion there is no clear cut answer as to the right option at this stage. It is a personal decision for carers, and as the decision can be left, it should be left to whoever is entrusted with [his] long term care."
"Evaluating a child's best interests involves a welfare appraisal in the widest sense, taking into account, where appropriate, a wide range of ethical, social, moral, religious, cultural, emotional and welfare considerations. Everything that conduces to a child's welfare and happiness or relates to the child's development and present and future life as a human being, including the child's familial, educational and social environment, and the child's social, cultural, ethnic and religious community, is potentially relevant and has, where appropriate, to be taken into account. The judge must adopt a holistic approach."
Moreover (para 33), the child's welfare is to be judged by the standards of reasonable men and women in 2016 and having regard to the ever changing nature of our world.
i) The first is that, as Mr Mitchell expressed it, "As far as brain protection is concerned, the risks of the cranioplasty operation are larger than the risks associated with a craniectomy in a normal family environment."
ii) From this it follows, again as Mr Mitchell expressed it, that "The principal advantages are cosmetic and psychological." The decision "has more to do with psychology and social interaction than it does with neurological function."
iii) The corollary is that the decision is not one for doctors but for the child's parents or carers.
iv) There is, as Mr Mitchell put it, "no room for dogma about whether or not it should be done."
v) There is no clinical need for a cranioplasty to be carried out now. As Mr Mitchell put it, "There is no particular time limit", though "If the operation is delayed beyond about five years, its benefit becomes increasingly marginal."
vi) There is, I think, some force in Mrs Walker's point that E should be spared what is likely to be traumatic surgery until he has further recovered and settled in what will be his long term placement, if that is indeed the decision which is then taken.
vii) Whatever the outcome of the forthcoming hearing of the care proceedings, E's future carers will in all probability have been identified within a period of months at most, and well within the timescale referred to by Mr Mitchell.
viii) For the reasons given by Ms Thomson, with which I agree, potential future family finding for E is not going to be adversely impacted by deferring a decision. Conversely it may be (one cannot put it higher than this), that future adopters, if that is in fact where we end up, could, as Ms Thomson puts it, "be dismayed that a significant yet not urgent decision had been made about "their child" without taking into account their views."