NHS Trust v B (A Child) and Mr & Mrs B (Parents)
| Jurisdiction | England & Wales |
| Judge | MR JUSTICE HOLMAN,Mr Justice Holman |
| Judgment Date | 15 March 2006 |
| Neutral Citation | [2006] EWHC 507 (Fam) |
| Docket Number | Case No: FD05P02589 |
| Court | Family Division |
| Date | 15 March 2006 |
[2006] EWHC 507 (Fam)
IN THE HIGH COURT OF JUSTICE
FAMILY DIVISION
Mr Justice Holman
Case No: FD05P02589
Huw Lloyd for the NHS Trust
Caroline Harry Thomas for the child
Charles Foster for the parents
Hearing dates: 2 nd—9 th March 2006
Approved Judgment
I direct that pursuant to CPR PD 39A para 6.1 no official shorthand note shall be taken of this Judgment and that copies of this version as handed down may be treated as authentic
I would like to begin this judgment with three preliminary comments. First and foremost, I am deeply conscious how stressful a case such as this is, above all, obviously, for the parents of the child concerned; but also for the doctors who have made a profound professional judgment which is now held up to intense and, in this case, very public scrutiny. I would like to thank the parents and also the doctors for their courtesy, patience and, so far as is possible in such a case, good humour throughout so stressful a hearing. Secondly, I am very grateful indeed to all the advocates both for their sensitivity and also for their great help to me during what is, obviously, a very difficult case for the court. I hope that, whatever the outcome, each side will feel that their advocate has served them well. Thirdly, since the second day of this hearing I have sat in public with a number of journalists and others present. I am in no doubt that it was appropriate that this case, not just this judgment but almost the whole of the evidence, be heard in public and I am glad that the BBC made their application. I have not personally felt that the presence of the media has been intrusive in the court room; nor, so far as I could observe, has it been oppressive to, or added to the burden upon, the parents, even when giving their evidence. I thank the media for the sensitivity they have shown, at any rate within the court room.
Introduction and overview
In this judgment I will call Mr B "the father" and Mrs B "the mother", and refer to them collectively as "the parents". The father is aged 29 and the mother is aged 2They married in January 2004. The mother has two children from a previous relationship, a boy aged 5 and a girl aged 4, who are treated as if they were the children of this father. The only child of their own marriage is M who was born on 26 th August 2004 and is now aged 18 months. At birth he appeared entirely normal. When he was a few weeks old his parents began to realise he was unwell or not developing normally. In particular he seemed to be very floppy. They took him to a nearby hospital on 16 th October 2004 when he was just 7 weeks old. He has never since left that hospital, which contains within it highly specialist staff and facilities for the treatment and care of babies and children. Very soon indeed the doctors diagnosed, and the diagnosis is undoubted and not in issue, that M suffers from spinal muscular atrophy (SMA).
SMA is a congenital condition resulting from an inherited genetic abnormality. Neither parent knew that they were carriers of that abnormality. In all its types or forms SMA may affect about one in every 6,000 people born in this country. However it can vary very considerably indeed in severity. As a result, doctors internationally use a scale to classify severity. In Type O cases the baby is born dead. Amongst survivors at birth, Type 1 is the most, Type 2 a less, and Type 3 the least severe. The type into which a child falls depends upon the age of onset and the degree of functional performance or loss of performance. Type 2 and 3 cases may only manifest a considerable time, perhaps even years, after birth and the degree of impairment may only be relatively limited. Many such people live very full and active lives, and I wish to stress that this case and this judgment simply have nothing to do at all with SMA in its less severe forms. Within Type 1 there is sometimes a further sub-division into tenths, with 1.1 the most severe of all and 1.9 the least severe of the Type 1 case, bordering with, or merging into, Type 2.
M was admitted to hospital at 7 weeks, when the condition was at once apparent to, and diagnosed by, specialist doctors. The floppiness was becoming noticeable to his parents even before that. This early onset, coupled with the later course of the disease in M, leads to the diagnosis, which is not in issue, that he has Type 1 SMA, at or around the severity of 1.1, i.e. the most severe of all amongst those who are not born dead. Dr Philip Jardine, a consultant paediatric neurologist who specialises, amongst other matters, in caring for children with SMA, was instructed on behalf of the parents in this case as an expert witness. He has examined M and all his medical records but is not one of the doctors who treat him. He described M as "the most severely affected child with SMA that I have ever personally seen". All the doctors who have given evidence or reported, whether as treating doctors or as expert witnesses, are united in the view that the disease in M is very severe indeed.
The condition is degenerative and progressive, i.e. it can only get worse. It may in some sufferers reach a plateau, but it cannot get better. It affects the voluntary muscles (but not the involuntary muscles such as those of the heart) which become progressively weaker and may ultimately cease to work at all. Since the affected muscles include the respiratory muscles, death is, in a true Type 1 case, absolutely inevitable unless, after a certain point (usually only a few months of age, and before the age of one year), artificial ventilation, i.e. breathing, is commenced.
In M's case he could initially use many of his muscles in an age-normal way. For instance, he could formerly cry audibly, smile, swallow, breathe and move his limbs, although he never reached the point of being able to sit unaided. Very sadly indeed, he has now reached a point where, save for movement of his eyes and possible slight but barely perceptible movement of his eyebrows, corners of his mouth, thumb and toes or feet, he cannot move at all (whether he can still move even to this extent is in issue and I will refer to the evidence later). He has not been able to breathe unaided at all since July 2005. He has required positive pressure ventilation via an invasive endo-tracheal tube (i.e. a pipe passing through his nostrils and down his windpipe towards his lungs, through which air/oxygen is pumped under pressure) continuously since October 2005. He cannot swallow at all, and has been fed through a gastrostomy tube (i.e. a tube inserted through his tummy into his stomach) continuously ever since November 2004.
In addition to suffering SMA, M also suffers or has suffered epileptic fits. Epilepsy is not a recognised symptom or side-effect of SMA. In M's case it may either be an inter-current disease which he just happens to suffer as well; or it may (I stress, may) be a consequence of an episode of hypoxia (i.e. loss of oxygen to the brain) at some stage due to his breathing difficulties. Currently his epilepsy is controlled by drugs and he has not had any seizure for some time. The fact that he suffers epilepsy, but of a kind that can be controlled by drugs, is really irrelevant to the issues in this case except that it may, I stress may, be an indicator that he has suffered some brain damage due to hypoxia.
However, brain damage or impairment, or loss of cognitive functions (i.e. the ability of the brain to think or operate in a normal, age-appropriate way) are not normal features of SMA, even of Type 1, unless there happens to have been some event such as hypoxia.
I will give a fuller description of aspects of M's current and possible future state and level of functioning later in this judgment. But the dilemma of this case is at once apparent.
The NHS Trust, in reality the treating doctors, consider that the quality of life for M is now so low and that the burdens of living are now so great that it is unethical (the word "cruel" has been used) to continue artificially to keep him alive, and that his endo-tracheal tube should be withdrawn. By the use of sedatives, he could have a peaceful, pain free and dignified death, but he would die almost immediately, probably within a few minutes. I stress very strongly indeed that the level of sedation would merely be sufficient to prevent pain and distress. The sedatives would not cause death. He would die from his own inability to breathe. However M is not unconscious, still less in a permanent vegetative state. He is conscious. He is awake most or all of the day, and then sleeps at night. It is probable, and must certainly be assumed, that he continues to see and to hear and to feel touch; to have an awareness of his surroundings and in particular of the people who are most close to him, his family; and to have the normal thoughts and thought processes of a small child of 18 months, with the proviso that because he has never left his hospital bed he has not experienced the same range of stimuli and experiences that a more normal 18 month old might: for instance, he has never, since he was 7 weeks old, been outside. But people talk to him and stories are read to him; he is shown TV and DVDs and music is played to him on CDs; and it must be assumed that he processes all these sights and sounds in his mind like any other child of his age and gains pleasure from them.
There have been legal cases and decisions in which approval has been given for the withdrawal of life support from, followed by immediate death of, brain dead or severely brain damaged...
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