Re Jake (A Child)
| Jurisdiction | England & Wales |
| Judge | Sir James Munby |
| Judgment Date | 19 August 2015 |
| Neutral Citation | [2015] EWHC 2442 (Fam) |
| Docket Number | No case number |
| Court | Family Division |
| Date | 19 August 2015 |
[2015] EWHC 2442 (Fam)
IN THE HIGH COURT OF JUSTICE
FAMILY DIVISION
Royal Courts of Justice
Strand, London, WC2A 2LL
Sir James Munby PRESIDENT OF THE FAMILY DIVISION
No case number
Mr Conrad Hallin (instructed by DAC Beachcrofts) for the applicant NHS Foundation Trust
Mr Richard Ager (instructed by Bosley & Co) for the father
Mr Joseph Railton Stanger (of Railton Solicitors, instructed by the Official Solicitor as litigation friend) for the mother
Ms Jacqueline Roach (instructed by the local authority legal services) for the local authority
Ms Lucinda Davis (instructed by Chamberlain Martin) for the guardian
Hearing date: 29 May 2015
Sir James Munby, President of the Family Division:
On 29 May 2015 I heard an urgent application relating to the medical treatment of a gravely ill 10-month old child. Because the matter arose during the vacation, was urgent and was not, in the event, contentious, the hearing, which lasted for about 90 minutes, took place by telephone conference call. In accordance with the usual arrangements, the hearing was recorded and the proceedings have subsequently been transcribed, though only after some delay. At the end of the hearing, I indicated that, subject to certain amendments, which in the event were agreed, I proposed to make an order in the terms sought. The precise terms of the order were finalised later the same day. It is set out in an Annex. I now give my reasons for making that order.
I am very sorry that this judgment has been so delayed. Most of it, in fact, was prepared within days after the hearing. Accordingly, except where otherwise noted, the facts are set out, using the present tense, as they were at the date of the hearing.
The background
Jake was born in July 2014 and is thus some 10 months old. He is the much loved child of his parents, who are devoted to him and understandably deeply distressed by their son's condition and the agonising situation in which they all find themselves. Both parents have their own difficulties, each having a diagnosed learning disability. Father's FS IQ is assessed at 61, mother's at 60. Father has capacity to litigate, the mother does not.
The local authority began care proceedings in relation to Jake in August 201The proceedings were issued in the Family Court. An interim care order was made at the case management hearing a few days later. The only relevance of this for present purposes is to explain the involvement of the local authority in the proceedings before me. For the effect of the interim care order is, of course, that the local authority shares parental responsibility for Jake in accordance with section 33(3) of the Children Act 1989.
Jake's medical problems
For much of his short life, Jake has been in hospital. He was admitted in September 2014 as he was having seizures. He remained in hospital until 11 December 2014, when he was discharged into the care of foster carers. On 2 March 2015, he was unresponsive when his foster carer tried to wake him, although his breathing appeared normal. On waking, he had a prolonged seizure. He was admitted to hospital again. Nine days later, on 11 March 2015, he was transferred to the London Teaching Hospital where he had spent much of the time the previous year and where he remains. Since October 2014 Dr W has been the consultant paediatric neurologist there responsible for his care. She has 12 years consultant experience. She works mainly in the complex epilepsy service, investigating and managing the medical needs and epilepsy of children like Jake.
I have three accounts from Dr W of Jake's difficulties: a medical report dated 4 May 2015, a medical report dated 21 May 2015, and a witness statement dated 28 May 2015. They should be allowed to speak for themselves. So I quote from them extensively.
Jake's medical problems: Dr W's first report
I start with the report dated 4 May 2015. Dr W diagnosed Jake as follows:
"Jake has an epileptic encephalopathy of infancy which in my view, is almost certainly genetic. A large number of tests have been done to try and find the cause of Jake's epilepsy and other problems. So far many results have been normal. I have this week received a genetic result which may be important but which needs some further exploration (I have asked blood from both parents to be tested) in order to understand what it may mean for Jake and his parents. I have also made a referral to Dr J, Consultant Clinical Geneticist, who will help to interpret the results from Jake and both parents when they become available in a few weeks time."
Dr W described Jake's medical problems as follows:
"1 Epilepsy with frequent epileptic seizures which so far occur many times each day and cannot be controlled with medication.
2 Movement disorder affecting his whole body so that Jake cannot control his movements well. He wriggles uncontrollably when he is awake. He sometimes gets distressed with the movements. Jake's father has asked whether Jake has cerebral palsy. Cerebral Palsy is a term used to describe lots of different kinds of movement problems which start in early childhood and are not progressive. Jake probably does have a form of cerebral palsy (I would use the term dyskinetic cerebral palsy meaning lots of additional involuntary movements rather than stiffness which is more common). I think he will always have difficulties with controlling the movements of his body.
3 Unsettled and unpredictable sleep pattern
4 Gastrostomy (tummy tube for feeding). Jake cannot take enough food by mouth safely and without choking so that he can grow. At the moment, it is not safe for Jake to have milk or food by mouth. A Speech and Language therapist will assess him from time to time when he goes home, as swallowing can sometimes improve. It is unlikely that Jake will be able to manage without the help of a gastrostomy tube in the long term.
5 Developmental delay. Jake has not made the developmental progress we would expect. I think that whatever genetic problem is causing the seizures is also the cause of his developmental delay. His delay cannot be explained by just the seizures or by his medication. He is severely delayed. We cannot be sure how much he can see or hear. He does not smile but is comforted with cuddles and physical contact."
Describing Jake's current and likely cognitive abilities, Dr W said:
"Jake has made little developmental progress. He is very likely to have a significant learning disability in the future. He may never walk or be able to communicate with words. His vision also may be affected because his brain cannot make sense of what his eyes see. His developmental progress has been assessed by the team at … and they will continue to monitor his progress when Jake leaves hospital."
Explaining the likely impact of seizures on his development, Dr W said:
"Jake's delayed development cannot be explained solely by his seizures. Although improved seizure control would be expected to lead to some developmental gains, I suspect any gains will be very slow. As time goes on, his developmental potential will become easier to predict. However the fact that Jake made no significant developmental progress between hospital admissions and whilst in foster care is of concern."
Dr W then turned to consider Jake's life expectancy. She said: "Jake's life is likely to be shortened because of his medical problems. There are no good studies of life expectancy in children exactly like Jake." Having examined the literature she continued:
"Jake is in a higher risk group compared with most children with epilepsy.
A trend is seen with younger children with complicated epilepsy (that is epilepsy with significant intellectual disability or a known structural brain lesion) diagnosed early having a shorter time to death … Published data are lacking, but experience suggests that the mortality in some genetic epilepsy syndromes such as Dravet Syndrome approach 20% by the age of 5 years, Ohtahara's syndrome 70+% by the age of two years. In my view, the severity of Jake's epilepsy and neuro-developmental status is such that a prediction of life expectancy is likely to fall somewhere between Dravet and Ohtahara syndromes."
Dr W then set out the treatment plan for Jake:
"Goals of treatment are to minimise the impact of the epileptic seizures and movement disorder so that Jake is not distressed by them, is able to maintain his airway, blood pressure and blood oxygen levels as well as possible, and to minimise any harm or side effects caused by medication or other treatments. A number of different epilepsy medications have been tried without success to date and dietary treatment started last week in an effort to improve seizure control and be able to reduce Jake's medication. Further medications may be tried in the future. Jake's father has requested I ask for a second opinion from my neurology colleagues at Great Ormond Street Hospital with regard to diagnosis, prognosis and treatment plans. I have made the referral.
… Currently Jake will be given full medical support including cardio-respiratory resuscitation, intubation and ventilation should his condition deteriorate. However if after review by the medical team and discussion with multidisciplinary colleagues and those with parental responsibility, it is considered that further intervention would be futile or harmful, such medical interventions may be limited. Treatment decisions are discussed in an ongoing way with those holding parental responsibility and as far as possible the views of Jake's parents and all carers are considered."
I need not refer to the remainder of the...
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