II

The facts in more detail.

1. A cautionary word the injunction.

Enough is known about this case for everyone to understand what a hideous nightmare it must be for these parents. If anyone is entitled to peace and privacy it is this mother and father and their babies. To protect them, Johnson J. made an order preventing the publication of anything calculated to lead to the identification of the parties or even their addresses - and that includes for the avoidance of doubt the country in which they live. The identities of the medical witnesses are likewise protected to keep them free from intrusion as they go about their private and professional lives. In order, however, to put into the legitimate public domain all that the public needs to know, I shall set out the facts are fully as possible (indeed more fully than I would ordinarily do for law-reporting purposes).

2. The parents.

The father is forty-four years old; his wife is ten years younger. They have been married for two years and have no other children. Life is hard for them. There is simply no work for the husband. He has been unwillingly unemployed for eight years. The mother was more fortunate but her work terminated during her pregnancy. They have, somehow, managed to accumulate very modest savings and were in process of building a home for their expected family.

When about four months pregnant, an ultrasound scan revealed that the mother was carrying twins and that they were conjoined. A doctor at the hospital had trained at St. Mary's Hospital, Manchester, and knew of its expertise and excellence. He advised that they should seek treatment there.

Through long established links between their government and ours their country is allowed to send a number of patients to be treated here on our National Health Service. We explain this because we read of what may be a concern to some that the parents are Kosovan refugees unjustifiably draining our resources. They are not, nor anything of the kind. That said, we remind the curious that the injunction covers any publication of any matter "calculated to lead to the identification" of the parents' address.

The assessment panel in their homeland not surprisingly judged that theirs was a case which local resources could not manage and in that way their government paid for the mother to travel to Manchester in mid-May for treatment during her pregnancy. The father has managed somehow to join her there.

Further scans were taken and an MR scan was undertaken at Sheffield. To quote from the parents' statement:-

"As a result of these scans it became clearer during the latter stages of the pregnancy that the difficulties with the twins were more than had originally been suspected and for a number of weeks towards the latter end of the pregnancy the clear indication was given to us by the treating doctors that sadly the smaller of the two twins would probably not survive. Indeed it was not thought that the smaller of the twins would survive birth. This was something we had to consider carefully and for a long time during the pregnancy we have always been aware that both of our babies were in great danger. In (our homeland), the termination of any pregnancy is illegal. When we came to England ... there was talk ... of (the mother) being able to undergo a termination because of the difficulties with the unborn children. This was not something (we) could give any serious consideration to because we are Roman Catholics and our beliefs are very important to us and we believe very strongly that everyone has a right to life. It was God's will for (the mother) to carry twins and it is God's will that those twins have been born alive and are continuing to make progress and indeed have made progress in the first seven days of their lives."

The consultant obstetrician said this:-

"I have had many discussions with them (the parents) about their wishes with regard to their children. I have at all times tried to accommodate their wishes within what I believe to be ethically and acceptable guidelines. As a result of their desire for non-intervention I took the unusual step of allowing the twin pregnancy to continue until she went into spontaneous labour at 42 weeks. Normally one considers delivery before that time because of a concern as to whether the placenta can adequately nourish both fetuses. Also, as agreed with them, I delivered them by Caesarean section at the last possible moment in labour. This was to meet their desire that the pregnancy was as non-interventionist as possible."

3. The birth.

The twins were born on 8th August 2000. Their combined birth weight was 6 kg. They were immediately taken to a resuscitation venue. The notes on Jodie record:-

"Baby crying and active ... making respiratory effort ... Easily intubated ... Baby making spontaneous breathing effort ... Kept intubated in view of condition of other twin."

As expected it was very different for Mary. Her notes read:-

"Making spontaneous respiratory effort on arrival from theatre. Face mask oxygen given ... Intubated ... Very stiff to ventilate. No audible air entry. Position rechecked and tube replaced to confirm tracheal placement. Still unable to ventilate. No chest movement or breath sounds."

An hour later it was noted that:-

"No assistance to breathing being given. No active intervention at the moment. Outlook for Twin 2 still bleak despite surprisingly stable condition at the moment."

In his evidence the consultant neonatologist said:-

"The fetal scans - in other words, those done before the delivery took place - suggested that there was a large quantity of fluid within the chest where the lungs should be, and that there was a large heart, and probably lung tissue. The real test came when the baby was born and we expected her - she had sufficient lung tissue to support herself breathing - that she would with our initial help be able to do so. My consultant anaesthetist colleague, who was intubating and resuscitating Mary, found that although he could pass the end of the clear tube into her main airway he was not able to make her chest move and he was not able to detect any gasway at all, nor when he put a monitor into the ventilator to track for excretion of carbon dioxide did he detect that any carbon dioxide, which should be being exhaled, was coming out. So we never had any evidence that she has breathed for herself at all."

4. The conjoined twins.

They are ischiopagus (i.e. joined at the ischium) tetrapus (i.e. having four lower limbs) conjoined twins. The ischium is the lower bone which forms the lower and hinder part of the pelvis - the part which bears the weight of the body in sitting. The lower ends of the spines are fused and the spinal cords joined. There is a continuation of the coverings of the spinal cord between one twin and another. The bodies are fused from the umbilicus to the sacrum. Each perineum is rotated through ninety degrees and points laterally.

The reports and medical literature did not prepare me fully for the almost numbing surprise at first seeing the twins in the photographs which were produced to us, though not to Johnson J. After the initial shock one is filled with desperate sadness and sympathy for these helpless babies and their devastated parents. These photographs are taken from the side and show the twins lying end to end on their backs. Jodie's head seems normal but Mary's is obviously enlarged, for she has a swelling at the back of the head and neck, she is facially dysmorphic and blue because she is centrally cyanosed. Between these two heads is a single torso about forty centimetres long with a shared umbilicus in the middle. Two legs, Mary's right and Jodie's left, protrude at an acute angle to the spine at the centre of the torso, lying flat on the cot but bending to form a diamond shape. The external genitalia appear on the side of the body. The consultant's report reads:-

"The nature of the conjoin produces a grossly abnormal laterally placed vulval configuration on each side and a markedly splayed perineum. The vulva for each twin is composed of two halves, each coming from the other twin. There is a single orifice in each vulva, which drains urine and meconium, and each twin has an imperforate anus. Each twin has two hemi-vaginae and two hemi-uteri. Such ano-urogenital disposition is consistent with a cloacal abnormality. The gonads and fallopian tubes could not be assessed."

Internally each twin has her own brain, heart, lungs, liver and kidneys and the only shared organ is a large bladder which lies predominately in Jodie's abdomen but which empties spontaneously and freely through two separate urethras.

For our purposes the absolutely crucial anatomical fact is that:-

"Jodie's aorta feeds into Mary's aorta and the arterial circulation runs from Jodie to Mary. The venous return passes from Mary to Jodie through a united inferior vena cava and other venous channels in the united soft tissues."

5. The twins' present condition.

The information concerning the twins' condition was originally given in a number of statements by the treating doctors, and by the evidence they gave Johnson J. It is worthy of noting, and we commend Johnson J. for his typically sensible approach, that the evidence of the doctors was taken by a video link facility outside the confines of the Royal Courts of Justice. Sooner, rather than later, fully efficient facilities ought to be established here. Since there was a degree of urgency about the hearing, no second opinion was available. This left us with a slight sense of unease that there may have been a rush to judgment and so we encouraged, and all parties agreed to, the Great Ormond Street Hospital for Children reporting to us and we are grateful for the speed with which they did so. During the course of the hearing, we have had up-dating reports on the twins' progress.

6. Jodie's present condition.

The consultant gave this description of Jodie nine days into her life:-

"She has an anatomically normal brain, heart, lungs and liver. Her bowel is also normal and appears to be totally separate from that of twin Mary. There is an abnormal vertebra in the lower thoracic area of the spine. She has two kidneys and a full spinal cord. She has two normal lower limbs, which move normally but are widely spaced because of the pelvic diastasis. The hip joints are both normal but the sacroiliac joints are dislocated and externally rotated causing the lower limbs to lie at right angles to the spine."

Neurologically the position is this:-

"She has various neonatal responses which appear to be normal including a Moro response, plantar grasp and palmar grasp responses, a withdrawal response and an asymmetrical tonic neck response. There is normal routing response and a glabellar tap. In the cranial nerves, the optic fundi are normal and she has normal external ocular movement. Facial movements are normal and she is capable of sucking and swallowing. In the limbs, appearance, tone, movements and muscle development seem satisfactory. The tendon reflexes are present and equal and the plantar responses are equivocal. Touch, pain and temperature are well perceived. In the trunk there appears to be normal development of the chest wall and the diaphragmatic movements are satisfactory. No obvious abnormality was seen in the cervical, dorsal and lumbar spine. The bladder is shared with her co-twin Mary. The pictures of the ultrasound brain scan showed no obvious abnormality. My finding suggests that Jodie may have normal brain development."

So far as her intelligence is concerned:-

"The feeling from the team is that Jodie's behaviour and anatomical studies, ultrasound scans and such like suggest that she has a normal brain, which is expected to function normally and of normal intelligence insofar as one can tell that at this point in time."

We are told that at three weeks of age she showed: "normal reactions and normal development as expected for a child of her age and gestation".

Of particular concern is the capacity of her heart to sustain life for herself and her sister. At three weeks:-

"Jodie's heart remains stable and appears to be coping well with the circumstances. ... these results (of blood gas analysis) are below normal indicating a degree of oxygen deprivation for both twins. Despite this presently Jodie does not show any clinical signs of concern."

There are some complications in that there is only one external opening which communicates with the urinary bladder and vagina and there is no opening of the anus.

The neonatologist who gave evidence to Johnson J. on 22nd August 2000 said:-

"I last saw her yesterday evening and she was, as I described just now, very sparkling really, wriggling, very alert, sucking on a dummy and using her upper limbs in an appropriate manner, very much a with it sort of baby."

After that hearing Jodie suffered a severe blood infection with Staphylococcus aureus and needed urgent intravenous resuscitation with plasma and antibiotics for which treatment the parents gave consent. It was effective and she soon returned to normal. The antibiotics have been discontinued and she is not receiving and indeed she does not require any medical support, though she has retained the intravenous catheter which was surgically placed at the time of her collapse.

A report from the hospital dated 31st August states that:-

"Her heart remains stable and shows no signs of strain from supporting, virtually completely, her sister Mary as well as herself. She feeds normally by mouth and appears to be a bright little girl achieving the expected developmental milestones. Her blood gas analysis has been consistently below normal for blood oxygen, probably as a result of admixture with the severely de-oxygenated blood of her sister Mary. This has not as yet presented any detectable clinical problem."

The Great Ormond Street paediatric surgeon told us that:-

"Jodie appeared alert, responsive and was seen to feed well. She is quite thin but is undistressed. Cardiac and pulmonary function appeared normal. There was nothing abnormal to feel in her abdomen either.

During the time I observed them, the twins appeared entirely contented. There was nothing to suggest pain or distress in either twin."

Their cardiologist reported:-

"Jodie was comfortable breathing air, alert and hungry. She was observed to feed from a bottle without distress. She is on demand oral feeds ... Oxygen saturation was 100% ... Arterial pulses were palpable in all limbs. There was good peripheral perfusion. Leg blood pressure was recorded as 80/50 mmHg. The precordial impulse was not overactive. Heart sounds were normal. I could not hear a heart murmur."

It is interesting that Great Ormond Street made the following comment:-

"At the present time, the twins' calorie intake is insufficient to allow growth. It is a feature of Siamese twins, even when both are neurologically normal, that one is more active and feeds less than the other. Conversely, the active, feeding, twin is thinner than the fatter one. A similar situation is developing here where Mary does very little and her twin does all the work. Although Jodie is feeding on demand, she is not at present receiving enough calories to grow normally and this is not a favourable situation for her in the long term. Presumably her feeding can be supplemented when this is deemed necessary."

On 13th September Mr Adrian Whitfield Q.C., counsel for St. Mary's Hospital, reported that:-

"The cardiac assessment this morning shows that Jodie's heart remains steady and there is no sign of failure. The surgeons are therefore not in any great hurry, as from the cardiac point of view things remain steady. However, the surgeon, from his usual observations, has noticed that Jodie is not growing as he would expect, and he has noticed this since last week, as has the nurse. Mary is growing normally. From the physical point of view, Jodie is not growing - although she is eating well - and the surgeon thinks that it may be that Mary is drawing nutrition from Jodie, and growing at her expense. This could have implications for the timing of the operation but there is no immediate rush. The surgeon is thinking of monitoring over the next week or so, and unless he continues to observe failure to grow in Jodie, he would still put the point of separation at three plus months. If, however, there was a continued failure to thrive, the operation would be advanced by about four weeks."

6. Mary's present position.

Mary is severely abnormal in three key respects.

Firstly she has a very poorly developed "primitive" brain. The brain scan showed various abnormalities including reduced cortical development, ventricular enlargement, partial agenesis of the corpus callosum and a Dandy Walker type malfunction of the hindbrain. A neuronal migration defect may have occurred. These are the result of a major malformation which was probably present early in fetal life. Similar brain malformations are not compatible with normal development in post-natal life. The neurologist gave evidence and these passages are pertinent:-

"Q. How would you describe the degree of abnormality of Mary's brain?

A. Very severe indeed ... It is possible that this child is progressively developing hydrocephalus which might be to its detriment. Corpus callosum in later childhood is associated with seizure disorders/epileptic fits. It is also associated with developmental delay and learning difficulties."

The second problem is with her heart. Hers is very enlarged, almost filling the chest with a complex cardiac abnormality and abnormalities of the great vessels. In his evidence the cardiologist said:-

"It (her heart) is very dilated and very poorly functioning. In terms of actually pumping blood out round the body it is doing very little work of its own accord. In terms of structure, the actual way the heart is formed is probably normal and, as I say, the problem is much more the functioning aspects, it is just not squeezing well at all ...

Q. So far as Mary's heart is concerned, is there any further deterioration that can occur in her heart that will cause any problems?

A. I think, as has already been said, if Jodie wasn't covering Mary's circulation she wouldn't be alive now if they were separate twins. There is no flow at all into her heart. I don't think things could get any worse than they are at present."

Thirdly there is a virtual absence of functional lung tissue (severe pulmonary hypoplasia).

The neonatologist said of her:-

"It has become apparent that she has no functioning lung tissue and does not shift air at all in and out of the chest, and has very poor heart function ... together with the fact that she has several very significant brain spectral problems ...

... the combination of the abnormal lung tissue development, which is virtually non-existent, and the very abnormal cardiac function which, for a single twin, would have meant that we would not have been able to resuscitate her from the word go, had she been just a single baby, plus a combination of the inter-cranial abnormalities makes me feel that her outlook is really extremely poor."

Great Ormond Street confirmed that Mary:

"... is not capable of separate survival because of grossly impaired cardiac performance and no useful lung function, with no prospect of recovery."

That is the sad fact for Mary. She would not have lived but for her connection to Jodie. She lives on borrowed time, all of which is borrowed from Jodie. It is a debt she can never repay.

8. The available options and the doctors' views.

There are three ways of treating this appalling situation.

(a) Permanent union: at the moment the twins survive virtually unaided, though Mary has to be fed by tube. The summary of the hospital view is that:-

"This (permanent union) condemns a potentially normal Jodie to carry her very abnormal sister, Mary, throughout the life of both. In view of the anatomical disposition Jodie will be unable to walk or even sit up appropriately. She is liable to progressive high output heart failure, which may lead to her earlier death within weeks or months."

This was examined in the evidence led before the judge. The cardiologist said:-

"At the moment the function of Jodie's heart is very good. We are happy with its functioning now. The difficulty we envisage for her is that at the moment she is pumping blood round both babies' circulations, and the analogy I give staff in the unit, so that it is easy to understand, is that it is like asking anybody's heart to pump up to a ten foot person. So if we suddenly grew about four feet overnight we are asking our heart to suddenly adapt and manage to deal with that for the foreseeable future. So the difficulty these hearts get into is that in time it places such an extra strain on the heart that they begin to show signs of failure.

Q. And what would the effect of that failure be?

A. At the time the heart failed to pump blood round both babies both Jodie and Mary would have less blood going to the vital organs and the kidneys would potentially fail ... the brain would be again further starved of blood and oxygen and that would lead to the death of both infants.

Q. Are you able to express an opinion upon when, if at all it is likely that Jodie will suffer this condition of high cardiac output failure?

A. In terms of conjoined twins it is very difficult to be precise ... but I think three to six months is a reasonable guide of the kind of time we could be looking at."

In cross examination he was asked:-

"Are there circumstances in which Mary could die but Jodie's heart continues to function?

A. I think at the moment ... because Jodie is essentially pumping for the vital organs of both twins as they breathe, I think that is unlikely ... I think that while Jodie is performing o.k., Mary will survive. I think if she was to deteriorate to the point where Mary was to die because of Jodie's heart being compromised I think probably both twins would die simultaneously."

Great Ormond Street were not quite as pessimistic. The paediatric surgeon says:-

"Although my impression is they can live together for many months, or perhaps even a few years, it does not seem likely that they can survive in this fashion long term."

The cardiologist said:-

"Jodie's heart provides sub-total perfusion of Mary's tissues. Cardiac work in Jodie will be substantially increased as a result, and consequently she is at risk of heart failure. This can be defined as the inability of her heart to pump sufficient blood for the needs of the body, which in this case, also includes Mary's body.

The estimated life expectancy of three to six months ... was reasonable, in my opinion. Any estimate of anticipated survival in this case will have wide confidence limits, and may need revision according to observed progress. Since the suggested 80-90% chance of death by age six months was made, more than two weeks has elapsed without evidence of haemodynamic deterioration. Jodie's heart continues to provide adequate tissue perfusion to both her own body and that of Mary without the need for pharmacological support. I do not know how long the twins will survive without surgical intervention. However, with the benefit of the longer follow up to date, I would estimate the chance of survival to beyond six months to be greater than the 10-20% likelihood previously suggested ...

Life expectancy with non-surgical supportive care is difficult to estimate. However progress to date suggests that the chance of survival of both twins to beyond the age of six months is probably greater than the previously suggested 10-20%.

I cannot provide an accurate estimate for an "upper limit" for life expectancy but this estimate would gradually increase with time if the present satisfactory progress from the point of view of Jodie's cardiac performance is maintained."

(b) Elective separation: the summary of the hospital's view on this is that:-

"(It) will lead to Mary's death, but will give Jodie the opportunity of a separate good quality life. There are concerns regarding the possibility of acute heart failure for Jodie at the time of separation. Jodie may have bladder and anorectal control problems and is likely to require additional operative intervention over time. She may have musculoskeletal anomalies, which may also require surgical correction. It is expected, however, that separation will give Jodie the option of a long-term good quality life. She should be able to walk unaided and relatively normally. Separation should allow Jodie to participate in normal life activities as appropriate to her age and development."

I will need to explore the prognosis for Jodie in more detail.

(c) Semi-urgent/urgent separation:

"[This] may need to be considered in the event of an acute catastrophe such as Mary's death, the development of progressive heart failure for Jodie, or the development of a life threatening condition ... The prognosis for Jodie would be markedly reduced and mortality highly likely, particularly following the death of Mary. For Jodie the prospects of urgent separation are less good (60% mortality) when compared with those of a planned elective separation (6% mortality). Clearly, for Mary, separation will always mean death. If it is possible it would be preferable to plan for an elective separation than to avoid "urgent" procedures."

No-one in the case advances this option. The probability seems to be that Jodie would die first and Mary's death would follow immediately. So long as Mary is alive the real problems in the case remain whether it is elective surgery or surgery undertaken in response to the intervening event.

The hospital and all concerned with the treatment and care of the twins are in favour of elective separation. The leader of the team gave this evidence:-

"I think every one of us involved in the team considering these issues, as indeed with many other issues we face in daily life, has to form their own judgment and form their own approach as to what in conscience, for instance, they are able to accept. We have taken the attitude that we would consult very widely with all members of the team giving opportunity to everyone to discuss and to bring up points for discussion. No-one has been forced into anything. I took the occasion after your comments yesterday to ask the members of the nursing staff on the neonatal unit, where the twins are presently being looked after, whether they or anyone they knew had any feelings or views which precluded them from being part of the team, or whether they had any conscientious objections and I was told that no-one could think of any individual who wished to opt out on a conscience basis knowing the full implications of what was proposed. So it has been discussed. People have had their views very definitely, but the feeling from everyone is that everyone is on board."

9. The nature of the proposed operation to separate the twins.

The surgeon gave the judge this explanation of the operation:-

"The operation will be in separate parts. The first bit will be to explore the anatomy to confirm that which we have been seeing on various investigations, so in other words can we confirm which bits are definitely whose and such like. We need also to determine - much of this can only be done at the time of surgery - from which parts each bit of each organ is being supplied so that we know which bit to give to whom. So that will be the first part of the operation. We would then be looking to proceeding with the separation of the bladders, giving whichever bit to each patient and also looking at the anatomy of the anal rectum. Once it is established which bits are going to whom, the actual separation then starts by separating the bones, the pelvic bones, one from another anteriorly and then proceeding fashioning skin and such like as you go along towards the spine, where the two spinal bones are joined together at their tip. That will need to be separated, the bones would need to be separated, within that we expect to find the common channel between the linings of the spinal cord which will need to be separated and similarly the terminal ends of the spinal cord.

Once we reach that stage, we should be left with possibly some muscle union at the pelvic floors, that will need to be divided so that each has its own two halves. Finally and eventually we have a major blood vessel, which is the continuation of Jodie's aorta, which is bringing blood across to Mary, and similarly the vena cava, which is returning blood from Mary to Jodie. Those would need separating, dividing. It is at that point that we would expect that Mary would then die.

The rest of the operation for Jodie would then be essentially a reconstructive operation, attempting to bring the pelvic bones together. One needs to break them and divide them at the back in order to allow rotation and apposition in front and then forming the buttocks and forming the anus and the vagina and urethra and essentially closing the abdominal wall anteriorly.

It is a major procedure and it will take many hours and it will involve various teams of surgeons: ourselves, the orthopaedic surgeons and one of the neurosurgeons in particular, as well as an anaesthetist for each baby and his team."

Further important points about the operation need to be noted.

Firstly, as the surgeon reported to us in answer to a question, "Would the separation operation impinge on the bodily integrity of Mary?", the response was:-

"Separation of the twins would necessarily involve exploration of the internal abdominal and pelvic organs of both twins and particularly the united bladder. It is expected however that each twin would have all its own body structures and organs. It is not anticipated or expected to take any structure or organ from either twin to donate to the other."

Secondly, there was a suggestion in the oral evidence to the judge that as a matter of prudence, given the utterly hopeless outcome for Mary, it would be better to favour Jodie "in relation to the skin element to ensure that we could close the surgical wound with Jodie". In evidence to us the surgeon explained that although that was the prudent course, it was not a necessary course and, if required not to do so, that precaution would not be taken, so that, putting it crudely, no part of Mary would be given to Jodie.

Thirdly as to where the clamping of the aorta would occur, he explained in a report to us that:-

"Interruption of the blood supply from Jodie supporting Mary would occur at the level of the united sacrococcygeal vertebrae. The site could be biased towards Jodie."

10. The prognosis for Jodie.

If the twins remain united, then, as already set out, Jodie's heart may fail in three to six months or perhaps a little longer. But it will eventually fail. That is common ground in this case. Her prospect of a happy life is measurably and significantly shortened. As to the manner of her death the surgeon told us that:-

"(Jodie) has, so far as we can make out, a perfectly normal brain and therefore we could expect that in the event of heart failure, with increasing breathlessness, increasing difficulty with oxygenation, with swelling of the liver, swelling of the legs, that she would become uncomfortable and would eventually find it an unpleasant experience to say the least."

Those effects could be palliated with drugs and the use of a ventilator. A similar breathlessness would occur if she suffered hypoxia, a drop in the oxygen concentration in the blood, usually as a result of infection. Such an infection might be septicaemia, some forms of which are not always successfully treated by antibiotics. Very young babies often suffer necrotising enterocolitis but the risk is decreasing as time goes by. If they suffered respiratory infection, she may again need to be placed on a ventilator. If she were to survive without the onset of illness, she would, ordinarily, attempt to roll over so that she is lying on her abdomen, ultimately to get into a crawling position. This would happen between five to eight months of age. She would instinctively want to try these movements but it will not be possible due to the attachment of Mary who, by reason of her brain anomalies, would not be developmentally at the stage where she would be wishing to undertake the same manoeuvre. For Jodie there will be the frustration of not being able to move.

"Her attachment to Mary means that she is not going to be able to walk or to stand, she is going to need to lie or to be carried wherever, and that will therefore limit her ability to develop as a normal child whereas if she survives this operation and walks, as she is expected to, she can have a relatively normal or as close to normal free existence."

If the operation to separate is carried out, there is a 5-6% chance the children might die. Great Ormond Street were more confident. They reported:-

"Surgery would probably be a low risk procedure for Jodie. The operation itself and the possibility of later complications would probably carry an overall risk of death of perhaps 1-2%.

As to her life expectancy St. Mary's surgeon said:-

"From what we know at this time of Mary, there is nothing which suggests that the life expectancy should be any shorter than normal ... Jodie's problems are functional, if you like, rather than life-threatening. Against those risks must be balanced the opinion that there is a 64% chance of death if an emergency operation had to be undertaken and the 80-90% prospect of death within three to six months, or perhaps a little longer, if no surgery is undertaken at all.

Evidence was given that the literature suggested:-

"... that the separation is usually well accepted without any serious or other psychological effects on the survivor. ... it is unlikely that she will have any major psychological consequences from that separation".

So far as her mobility is concerned, the surgeon said:-

"All the indicators and also the experience from the literature suggest that she should be able to stand and she should be able to walk on her own without support, so, yes, we would expect her to have reasonably normal mobility. I hesitate to say normal because obviously there are serious concerns here. That will be the expectation: that she will be able to get around sensibly, as close to normal as possible on her own and unsupported."

He was asked for the worst possible scenario and said:-

"In the worst scenario, yes, it is possible that she will never walk, she may need a wheelchair, she may need an appliance in the form of a crutch or a brace or something like that but it is not what is expected."

He explained:-

"In the first instance she is going to need her pelvis sorting out at the time of first operation in order to allow closure and such like. Any further operative procedures will depend on whether the pelvis and the spine were stable, whether there was any progression of any adverse circumstance, so she may need no operations at all. If as she was growing it became obvious that the spine was beginning to bend, for instance, as a scoliosis, then the spinal surgeon may consider it relevant to institute therapy for that, be it conservative with plaster and/or surgery. ... The most common situations which arise when they do arise relate to the pelvis re-spreading so that the limbs go into a lateral position, so we have a sort of wobbling gait, rather than feet facing forwards they face laterally. So a further operation at some stage to re-adjust the configuration of the pelvis and to bring the feet into a more normal alignment for walking would be one area. Another would be the question of a bend in the spine, as I have mentioned, scoliosis, developing and progressing and that would be a scenario where surgery would be relevant to correct the bend and join the bones, tying the bones together such that the bend is stabilised. But it may be that she would never come to any surgery. The literature says that in looking towards the long-term future one should have regard to potential musculoskeletal concerns and we have taken that on board along with every other system."

He was a little more cautious about the anorectal situation saying:-

"It is not normally formed, it is an imperforate anus and therefore we are going to have to reconstruct in a manner of an imperforate anus and if you add to that the split of the floor, which is where the muscles are, then it does make it rather more difficult. So there are good points and there are bad points. The nerves going to the muscles seem to be normal but the muscles themselves are split and the whole area is not normally formed. Therefore when you come to reconstruct all that there are very many factors at which one has to look in terms of continence so I am little bit cautious at saying to you that it is going to be all right. I hope it will be."

He explained the difficulty. The prospect is that the anus will learn to open and close normally. If that has not been achieved by about school age, it may need wash-outs and enemas and such like and the possibility of a colostomy. The family would need some form of medical nursing support initially to help them in learning how to care for the attachment of the colostomy bag and there may be practical difficulties in finding a ready availability of those bags in their homeland. As the surgeon observed:-

"A colostomy would perhaps be regarded as a much greater handicap than it would be in this country for instance."

The surgeon is hopeful, though he cannot be certain, that they would be able to preserve what seems like a relatively normal bladder function. Again the worst case scenario would be that Jodie would have to have a urinary diversion with a bag. The surgeon commented in evidence:-

"Of themselves, they reduce your quality of life but they do not destroy your life. There are several children and people who live with such diversions. It may be it is not an entirely normal life. I think perhaps the most relevant ones would be serious musculoskeletal problems, which would directly interfere with her life and in the longer term she may require further attention to her vagina which may to a certain extent affect how she functions sexually, but it certainly is reconstructable. ... Jodie at the moment has normal vaginal structures and uterus, they are unfused, they are in two parts instead of one, they are in the form of two tubes as they develop embryologically instead of one tube, so she needs some attention to that vagina in order to make it one channel. ... (She) has two half uteri and two half wombs both of which normally grow sufficiently to make a full pregnancy without concern, so the uteri do not need surgery. We do not know as yet what is the status with her gonads, with her ovaries. The normal expectation is that she should have two normal ones. ... So one would expect that as long as she is able to perform normally sexually there is no reason why she should not conceive in the course of time and have her own children."

The long term prognosis following surgery offered by Great Ormond Street is much more optimistic and I bear in mind the greater experience they bring to bear. Their surgeon says:-

"Jodie ... will require further surgery. It seems likely to me that her large bowel is normal and, therefore, I would expect her to have normal bowel control. However, given that the attachments of the muscle in the pelvis will be absent or at least tenuous on one side, one could not be absolutely certain that bowel control will be normal. I would, however, be hopeful in regard to this aspect.

At present, it seems that the twins void normally. One would hope, therefore, that this would continue after surgery.

Further operations will be required to provide a functioning vagina. This is a procedure which is commonly performed and the results are variable. Nonetheless, the great majority of children achieve a functioning vagina after reconstruction.

From the available literature, it seems that gait is normal, or near normal. Jodie does have a hemi vertebra at the lower end of her thoracic spine. It is possible that she would need scoliosis surgery should a curvature of the spine develop. At present the need for surgery cannot be predicted and one would need to await further spinal growth."

11. The prognosis for Mary.

If the operation to separate the twins is carried out, Mary will be anaesthetised against all pain and death will be mercifully quick. The surgeon was frank in acknowledging there was really no benefit for Mary in the operation. This was put to him:-

"Q. The phrase you used, which is a harsh one, but the reality nonetheless has to be faced, is that effectively during this operation you would be, to use your own words, killing off Mary.

A. Yes and that is a very serious worry for all of us involved in such an act and we would only look to taking it on if we felt that there was really and truly in the best interest, taking the whole situation as it is, of Jodie and if Mary's long-term survival was so poor that it was not really a sensible proposition, also leaving them united together detracts markedly and severely from the quality of life for both really.

Q. Just focusing on Mary for a moment, there cannot really be any doubt, can there, that, as His Lordship said, it is in Mary's best interests to maintain the status quo?

A. Can I question "best interests"? It is only in Mary's best interests insofar as it is her only means of survival to continue to use Jodie as her oxygen supply and her circulatory pump ...

Q. Is there any therapeutic benefit for Mary in the operation being performed?

A. If you look at it in terms of Mary dying, no, there is not a therapeutic benefit. If you look at it in terms of what Mary's life would be like attached forever to her sister, then it is not a benefit for her to remain attached to her sister: she will be much happier if she is separate."

The neonatologist expressed himself slightly differently. In his report he said:-

"It is sadly therefore in Mary's best interests that the ultimate aim should be planned separation of these twins accepting the fact that this would terminate the life of Mary."

Asked about that he said in evidence:-

"I think my perception of the quality of her life is that it would be so poor that I do not feel that it is a life that she will enjoy. I think her limitations would be so severe that inter-reactions with and development and progress would be so severely interrupted, prevented really, that in my view it is acceptable to acknowledge that Mary should be allowed to die ...

Q. ... I do not think you have quite answered my question. Is it really your view that the best option for Mary is to terminate her life?

A. I think I come back to the fact that the quality of any life that she will have will be so poor that, yes, I feel that it is appropriate to terminate her life."

If the twins are to remain fused, the evidence is that Mary will have a 75% or more chance of developing hydrocephalus which would be "extremely difficult" to treat because usually the end of the shunt system would either go into the abdominal cavity which is abnormal in her case or into the heart which is also not possible in her case. The effect of untreated hydrocephalus will be to increase brain damage. She is at risk of suffering epilepsy. Lack of sufficient oxygen will progressively cause cellular damage and brain damage. In the view of the neonatologist, her condition is not terminal but severe.

There is great uncertainty as to the extent to which she suffers pain. The paediatric surgeon in the evidence he gave us said:-

"What we see at present is a child whose responses are extremely primitive. They are more like mass movements to a stimulus, be it what is regarded as a pleasurable stimulus or a painful stimulus. They are withdrawal type and grimacing and such like. So we are not really able to differentiate at this time, and even at four weeks of age now, whether this twin actually appreciates pleasure or pain. Certainly there is a response to stroking and there is a response to pinprick, but they are the same."

The neonatologist explained that:

"... she just screws her face up in what appears a painful sort of way, and that is the only facial expression I see her make, and that is not an "irritant stimulation, it's really gentle, it's patting her or stroking her head".

Sadly the same reaction is produced to a pinprick. He explained to the judge:-

"That might be a reflex response to sensation."

The judge commented:-

"But this baby cannot cry because this baby has no lungs. So how would you know, in the situation that I am putting to you, whether Mary is suffering pain or not?

A. It is extremely difficult, sir, I do not have a straightforward answer for you ... My Lord, the responses that Mary shows are certain stereotype responses that we can observe as doctors, but it is how you interpret those responses which matters. If that response occurs to being tugged or pulled, her being pricked to obtain a blood sample, the interpretation that one might place on that stereotype response is possibly pain. On the other hand, if you get a similar response to gentle stroking it might not imply pain."

The paediatric neurosurgeon, observing that her brain is not functioning normally and that she would not achieve the development one would expect in the next three to six months in a child with a normal brain, then said, in answer to the question whether she had any ability to feel pain or suffering:-

"I was impressed by the observation of being dragged around, which was going to be if not painful certainly very uncomfortable, and I would further subscribe to that by saying that having your skin dragged over any sort of surface is likely to be very uncomfortable, if not constantly painful, and I agree - I think that is an horrendous scenario, to think of being dragged round and being able to do nothing about it. I think with the increasing activity of Jodie, Mary's situation becomes worse."

Miss Parker Q.C. on Jodie's behalf asked the surgeon a "very theoretical question" whether Mary could be kept alive if she were attached to a heart lung machine immediately after the common aorta was severed. He agreed that it was possible but he went on to say:-

"It is not something that we would have planned as part of the procedure because this is the sort of situation that one would set up if one was looking towards a survivor. It is a holding situation, pending whatever is your final operation that is going to lead to a separate viable entity. Here for the weaker of the twins, unless there was a heart and lungs available for transplant instantly there would not really be all that much point, and then one has to take into context the rest of the problems which the child has ... which really do not suggest that there is any point in taking on a heart/lung transplant for this child."

Great Ormond Street agreed. In their opinion:-

"This would not be appropriate as the only accepted indication for this very intensive form of treatment is in the context of potentially recoverable abnormality, or possibly as a short term bridge to transplantation. Heart and lung transplantation in Mary is not an option. Heart and lung transplantation has not been performed in early infancy to my knowledge; even if it was considered to be technically feasible, donor organs of appropriate size are not available."

Miss Parker wisely and properly did not pursue this line. It would make a mockery of law and medicine to escape some of the difficulties in this case by hooking this child into a heart/lung support machine and then seeking permission to discontinue that treatment given the futility of prolonging her life. Bland has already left the law, as Lord Mustill commented, in such a "morally and intellectually misshapen" state. It would be quite wrong, as the doctors recognise, to contemplate this an acceptable outcome to the case. But it remains a poignant irony in the case. At one end of life, the pregnancy could have been lawfully terminated, Mary would have died but no offence would have been committed because she is not viable. Now at the other end, were it ethically permissible to do so, life could have been preserved artificially and then ended on Bland principles.

12. The medical literature.

A considerable body of medical literature has been placed before us, as well as a number of helpful articles referring to the legal and ethical problems in dealing with conjoined twins. It has been fully discussed in the judgment of Brooke L.J., a copy of which I have read in draft, and, rather than repeat any of it in this judgment, I gratefully adopt his exposition.

13. The parents' views.

It is a laudable feature of this case that despite holding such different views about the twins' future, the parents and the hospital have throughout maintained a relationship of mutual respect. The highly commendable attitude of the parents is shown in this passage in their statement:-

"We have been spoken to on many occasions by all the treating doctors at St. Mary's Hospital and we were fully aware of the difficulties ... We have been treated with the utmost care and respect at St. Mary's Hospital and we have no difficulties or problems with any of the medical staff that are treating (us)."

As parents of the children, their views are a very important part of this case. It is right, therefore, that I set them out as fully as possible:-

"We have of course had to give serious consideration to the various options as given to us by our daughters' treating doctors. We cannot begin to accept or contemplate that one of our children should die to enable the other to survive. That is not God's will. Everyone has the right to life so why should we kill one of our daughters to enable the other to survive. That is not what we want and that is what we have told the doctors treating Jodie and Mary. In addition we are also told that if Jodie survives and that is not known at all, then she is going to be left with a serious disability. The life we have ... is remote ... with very few, if any facilities would make it extremely difficult not only for us to cope with a disabled child but for that disabled child to have any sort of life at all.

... there is a small hospital where you can receive emergency treatment but certainly they do not have the staff or facilities to cope with someone with serious ongoing difficulties. Any treatment would have to be undertaken (some distance away) where there is a hospital and a further hospital is being built which should be completed in about three years time. However if specific treatment is required it may be necessary for us to go further afield and indeed come back to St. Mary's Hospital in Manchester for further treatment. That is how we came to St. Mary's Hospital in the first place to ensure that our babies had the best possible treatment.

These are things we have to think about all the time. We know our babies are in a very poor condition, we know the hospital doctors are trying to do their very best for each of them. We have very strong feelings that neither of our children should receive any medical treatment. We certainly do not want separation surgery to go ahead as we know and have been told very clearly that it will result in the death of our daughter, Mary. We cannot possibly agree to any surgery being undertaken that will kill one of our daughters. We have faith in God and are quite happy for God's will to decide what happens to our two young daughters.

In addition we cannot see how we can possibly cope either financially or personally with a child where we live, who will have the serious disabilities that Jodie will have if she should survive any operation. We know there is no guarantee of survival but she is the stronger of the two twins and if she should survive any surgery then we have to be realistic and look at what we as parents can offer to our daughter and what care and facilities are available to her in our homeland. They are virtually nil. If Jodie were to survive she would definitely need specialist medical treatment and we know that cannot be provided. Jodie would have to travel, on many occasions, possibly to England to receive treatment. It concerns us that we would not have any money for this treatment and we do not know if this is something (our) government would pay for.

This has meant that we have also had to give very careful consideration to leaving Jodie in England, should she survive, to be looked after by other people. We do not know if other people would be willing to look after such a seriously disabled child, but we do know that this is something that if we had any other choice we would not even give it consideration. It would be an extremely difficult, if not impossible decision for us to reach, but again we have to be strong and realistic about matters and understand that certainly Jodie would receive far better care and importantly the required medical treatment should she continue to reside in England as opposed to her being taken home. We do not know whether it is possible or feasible for Jodie to remain in England. We do not know if it is possible or feasible for her to be fostered by another family so that we can have an involvement in her upkeeping or whether she would have to be adopted and we could have no contact with her at all. That would break our hearts. We do not want to leave our daughters behind, we want to take them home with us but we know in our heart of hearts that if Jodie survives and is seriously disabled she will have very little prospects on our island because of its remoteness and lack of facilities and she will fare better if she remains in this country. ... So we came to England to give our babies the very best chance in life in the very best place and now things have gone badly wrong and we find ourselves in this very difficult situation. We did not want to be in this situation, we did not ask to be in it but it is God's will. We have to deal with it and we have to take into account what is in the very best interests of our two very young daughters.

We do not understand why we as parents are not able to make decisions about our children although we respect what the doctors say to us and understand that we have to be governed by the law of England. We do know that everyone has the best interests of our daughters at heart and this is a very difficult situation not only for us as their parents but also for all of the medical and nursing staff involved in Mary's and Jodie's treatment."

I said when this appeal opened that we wished at the very beginning to emphasise to the parents how we sympathise with their predicament, with the agony of their decision - for now it has become ours - and how we admire the fortitude and dignity they have displayed throughout these difficult days. Whether or not we agree with their view does not diminish the respect in which we hold them.

14. The nature of these proceedings.

I am satisfied there has been the closest consultation between the medical team, the parents, their friends, their priest and their advisers. Just as the parents hold firm views worthy of respect, so every instinct of the medical team has been to save life where it can be saved. Despite such a professional judgment it would, nevertheless, have been a perfectly acceptable response for the hospital to bow to the weight of the parental wish however fundamentally the medical team disagreed with it. Other medical teams may well have accepted the parents' decision. Had St. Mary's done so, there could not have been the slightest criticism of them for letting nature take its course in accordance with the parents' wishes. Nor should there be any criticism of the hospital for not bowing to the parents' choice. The hospital have care of the children and whilst I would not go so far as to endorse a faint suggestion made in the course of the hearing that in fulfilment of that duty of care, the hospital were under a further duty to refer this impasse to the court, there can be no doubt whatever that the hospital is entitled in its discretion to seek the court's ruling. In this case I entertain no doubt whatever that they were justified in doing so.

Thus they issued an originating summons on 18th August entitled "In the exercise of the inherent jurisdiction of the High Court and in the matter of the Children Act 1989". The relief which was sought was:-

"A declaration that in the circumstances where (the children) cannot give valid consent and where (the parents) withhold their consent, it shall be lawful and in (the children's) best interests to

(a) carry out such operative procedures not amounting to separation upon (Jodie and/or Mary)

(b) perform an emergency separation procedure upon (Jodie and/or Mary) and/or

(c) perform an elective separation procedure upon (Jodie and Mary)."

There has been some public concern as to why the court is involved at all. We do not ask for work but we have a duty to decide what parties with a proper interest ask us to decide. Here sincere professionals could not allay a collective medical conscience and see children in their care die when they know one was capable of being saved. They could not proceed in the absence of parental consent. The only arbiter of that sincerely held difference of opinion is the court. Deciding disputed matters of life and death is surely and pre-eminently a matter for a court of law to judge.

15. The judgment of Johnson J.

His judgment was given, as so frequently happens in this kind of case, under even greater pressure of time than we have felt. He did not have the benefit of the searching arguments we demanded and received of counsel. He found that Jodie would be able to lead "a relatively normal life":-

"All in all, the evidence, which has not been, and in my judgment could not be, the subject of serious dispute is that in medical terms Jodie's life would be virtually as long as and would have the quality of that of any ordinary child. ... For Jodie separation means the expectation of a normal life; for Mary it means death."

He directed himself that the children's welfare was paramount. He attached "great weight to the wishes of the parents". He asked:-

"If in a situation such as this, parents' rights are to be regarded as anything less than of the most vital importance, then what rights, I ask, are there in a free society?"

He said:-

"If, which I do not, I were to balance the interests of Jodie against those of Mary, then Jodie's chance of a virtually normal life would be lost in order to prolong the life of Mary for those few months. ...

Mary's state is pitiable. ...

However pitiable her state now, it will never improve during the few months she would have to live if not separated. During the course of the hearing I raised with counsel and with one of the paediatricians the question of pain. Mary cannot cry. She has not the lungs to cry with. There is no way that can be remotely described as reliable by which those tending Mary can know even now whether she is hurting or in pain. When lightly touched or stroked her face contorts. When pinched there is the same reflex. But she cannot cry. So I ask, what would happen as the weeks went by and Jodie moved, tried to crawl, to turn over in her sleep, to sit up. Would she not, I ask, be pulling Mary with her. Linked together as they are, not simply by bone but by tissue, flesh and muscle, would not Mary hurt and be in pain? In pain but not able to cry. One very experienced doctor said she thought that was an horrendous scenario, as she put it being dragged around and not being able to do anything about it. Accordingly, weighing up those considerations I conclude that the few months of Mary's life if not separated from her twin would not simply be worth nothing to her, they would be hurtful. ... To prolong Mary's life for these few months would in my judgment be very seriously to her disadvantage."

He dealt with the parents' wishes, quoting at length from their statement:-

"... as one way of my emphasising to the parents that I have truly taken into account their feelings as loving parents. I recognise, as they do that what is proposed has not only an inevitability for Mary but also creates at best the chance for Jodie of a life that will have social and emotional problems over and above those problems which can be medically cured. But as I have sought to emphasise throughout this judgment my focus has been upon Mary and what is best for her. And about that I am in no doubt."

He dealt with the lawfulness of the proposed act observing that:-

"If the operation is properly to be regarded as a positive act then it cannot be lawful and cannot be made lawful. I have found this to be the most difficult element in my decision."

He held:-

"I was at first attracted by the thought prompted by one of the doctors, that Jodie was to be regarded as a life support machine and that the operation proposed was equivalent to switching off a mechanical aid. Viewed in that way previous authority would categorise the proposed operation as one of omission rather than as a positive act. However on reflection I am not persuaded that that is a proper view of what is proposed in the circumstances of this particular case. I have preferred to base my decision upon the view that what is proposed and what will cause Mary's death will be the interruption or withdrawal of the supply of blood which she receives from Jodie. Here the analogy is with the situation in which the court authorises the withholding of food and hydration. That, the case is made clear, is not a positive act and is lawful. Jodie's blood supply circulates from and returns to her own heart by her own circulation system, independent of the supply and return from Mary. So it was suggested that one could theoretically envisage a clamp being placed within Jodie's body to block the circulation to Mary, so that there would be the immediate consequence for Mary without any invasion of her own body. I emphasise that this was simply part of the arguments to see how the operation should be categorised in order to judge its lawfulness. It was simply one of a number of arguments, analogies and illustrations that were canvassed in final submissions which I have not found it possible to record more extensively in what is effectively an ex tempore judgment. Nevertheless I have concluded that the operation which is proposed will be lawful because it represents the withdrawal of Mary's blood supply. It is of course plain that the consequence for Mary is one that most certainly does not represent the primary objective of the operation."

So he made the declaration asked.

16. The Grounds of Appeal.

The parents have appealed on the grounds that the learned judge erred in holding that the operation was (i) in Mary's best interest, (ii) that it was in Jodie's best interest, and (iii) that in any event it would be legal. The appeal has accordingly ranged quite widely over many aspects of the interaction between the relevant principles of medical law, family law, criminal law and fundamental human rights. I propose to address them in that order.

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