Parents win 'right-to-life' judgment for 18-month-old son

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The Independent Online

A High Court judge today refused doctors permission to withdraw life-sustaining ventilation from an 18-month-old boy at the heart of a landmark right-to-live case.

His parents, from the north of England, who fought for ventilation to be continued, were present at the London courtroom as Mr Justice Holman announced his ruling on their son's fate.

Their child, who can only be referred to as MB for legal reasons, suffers from spinal muscular atrophy - an incurable and progressively worsening condition leading to complete paralysis.

The judge heard medical opinion that MB's life was "intolerable", but his parents pleaded with him not to grant an application brought by a hospital trust to withdraw life-support because continuation was not in his best interests.

Reading out his lengthy ruling, Mr Justice Holman said he was not persuaded that it was "currently in the best interests" of the boy to discontinue ventilation with the inevitable result of immediate death.

It is believed to be the first case of its kind involving a patient who is not in a persistent vegetative state.

Refusing the trust's application the judge said: "I am not persuaded, even taking into account predicted future deterioration, that it is currently in the best interests of M to discontinue ventilation with the inevitable result that he will immediately die."

He said he did not "currently support" the option put forward by the trust - which was for withdrawal of ventilation allowing the child to have a dignified, pain-free death surrounded by his family.

Expressing his "great and very genuine respect" for all the doctors, Mr Justice Holman added: "I actually go further and consider that currently it is positively in his best interests to continue with continuous pressure ventilation and with the nursing and medical care that properly go with it, including suctioning and deep suctioning when required, replacement of the tube as necessary and chest and lung physiotherapy to clear his secretions.

"Although that is my opinion, I cannot and do not make an order or declaration to that effect. I merely state it."

But he went on: "There are, however, procedures which go beyond maintaining ventilation, which require the positive infliction of pain and which, if required, will in my view mean that M has moved naturally towards his death despite the ventilation.

"If that point is reached it would be in his best interests then to withhold those procedures even though he would then probably die."

Those procedures included cardio pulmonary resuscitation, blood sampling and administration of intravenous antibiotics.

MB suffers from spinal muscular atrophy type 1 - the most serious category of the condition.

He cannot breathe for himself, cannot chew or swallow, is fed through a tube and - while not believed to be impaired mentally - can only move his eyebrows, feet, and his fingers very slightly.

He is currently kept alive by endotracheal ventilation.

His parents feel he can recognise and respond to them and has enjoyment from spending time with his family, and this gives him a reasonable quality of life.

In a statement released after the ruling, the family's solicitor said Baby MB's relatives were "delighted" with the decision.

The solicitor said: "The family and I are delighted that the judgment today by Mr Justice Holman has given Baby MB the right to continue his life.

"The judgment given today shows recognition that Baby MB does have quality of life and that his life is worth living.

"His parents feel vindicated by the judgment, which they feel proves what they have felt to be true all along.

"Mr Justice Holman has assessed Baby MB's best interests by weighing up the benefits and pleasures that Baby MB is able to experience from life, against the burdens of regular medical interventions.

"This has been a particularly unusual case as Baby MB is the only baby in this situation known to have cognitive skills, and because if taken off the ventilator, he will die almost immediately."

The statement continued: "Baby MB is aware of his surroundings. Like many children his age he enjoys being read to, listening to music and watching cartoons on television.

"He enjoys playing with his parents and his brother and sister.

"He is now able to show his likes and his dislikes. His parents feel that the benefits and pleasures that baby MB is able to enjoy outweigh the discomforts and limitations of his life in hospital.

"It is notable that many of the nursing staff who are with him every day feel the same way.

"In giving judgment today the court has agreed with the assessments as to MB's quality of life made by those people who know him best.

"The family would like to thank the public for the many messages of support that they have received during this difficult period.

"The court has authorised doctors to withhold certain specific treatments in the event that MB's condition becomes significantly worse.

"The parents will consider the judgment carefully on these issues but they say that in the event of a serious deterioration, if the doctors are going to make a decision to withhold those specific treatments, they should ensure that a full assessment of MB's quality of life takes place at that time.

"The family now wish to be left alone to spend time with their son. They will not be giving interviews today."

A spokesperson for the trust said: "This is an extremely difficult case in which the trust consulted independent experts and considered the guidance of the General Medical Council and the Royal College of Paediatrics and Child Health before seeking the court's ruling."

The trust "has a duty to place MB's best interests first".

The trust would now "consider the details of the ruling and how best to care for MB in the light of this decision, continuing to act in his best interests".

The judge said: "M is going to die. He will probably die within about a year although I fully accept he may live longer. He may also die much sooner."

He accepted that there was "almost relentless discomfort, periods of distress and relatively short episodes of pain" in the child's life.

"It is indeed a helpless and sad life," said the judge.

But that life included benefits: "Within those benefits, and central to them, is my view that on the available evidence I must proceed on the basis that M has age appropriate cognition, and does continue to have a relationship of value to him with his family and does continue to gain other pleasures from touch, sight and sound."

Those benefits were "precious and real" and were the only benefits the child was "destined to gain from his life".

Mr Justice Holman said: "I do take into account and have very anxiously considered future deterioration."

But he did not "consider that the future, however awful it may become, yet justifies that today, tomorrow or the next day his current burdens outweigh the benefits and that he should be allowed to die".

He said: "I hope that this case can now return to the privacy of the hospital where the doctors and the parents must continue to consult and to keep under review.

"The time is not now; but may come when the parents have to face up to the inevitability and need, for M's own sake, of withdrawal of ventilation.

"If they do they will know that they have done everything possible, for as long as possible to enable M to achieve and value for as long as possible all that his life could give to him.

"Every day some parents somewhere, in consultation with doctors, have to make agonising decisions about the best interests of children with severe SMA or similar disorders.

"I hope that this judgment and decision will neither deter doctors from commencing ventilation when they consider it should be tried; nor lead any parent who has taken or may take, on the advice of doctors, the agonising decision not to start, or to discontinue ventilation, to feel that their decision was mistaken.

"For every case and every child is unique and this case concerns M alone."