Life
of sick baby 'intolerable'
A baby at the centre of a landmark case over whether life support can
be withdrawn has an "intolerable life", the High Court has heard.
Baby MB, who cannot be named, has spinal muscular atrophy - a genetic
condition which leads to almost total paralysis - and cannot breathe
unaided.
Doctors treating the 17-month-old say it is in his best interests to
withdraw ventilation and to let him die.
But his family says he has a reasonable quality of life and should stay
alive.
They feel he can recognise and respond to them, and that he gains
enjoyment from spending time with his family.
An injunction reporting any details of the case has been lifted after
an application by the BBC, but none of the parties involved can be
identified.
We are hopeful we can persuade the court that his quality of life is
good enough so that treatment should not be withdrawn
Baby MB's mother
A medic known only as Dr S told the court one had to consider the
baby's inability to express his wishes, move or show if he is in any
pain or distress.
When questioned by Caroline Harry Thomas, counsel for the Children and
Family Court Advisory Support Service, representing the child's
interests, he said: "I think the cumulative effect of all this is that
he has an intolerable life."
The doctor said the child would have to live through a period in which
he was unable to open his eyes, if the current treatment regime
continued.
He would need them opened manually to be able to see, he added.
Baby MB has also been wearing splints on his hands and feet
intermittently, which caused discomfort, and a risk of limb fractures
would develop in relation to normal handling.
'Difficult position'
Charles Foster, counsel for the family, asked Dr S whether he thought
the hospital's application to remove ventilation was premature.
Dr S said he disagreed, replying: "I would actually say that it could
be seen as an application that is later than it should have been."
The child's neurologist, also known only as Dr S, was asked by the
judge whether he would regard it as acceptable medically and ethically
to continue ventilation but not to resuscitate should the child go into
collapse.
He said continuing the specific treatment would not be in the child's
best interests.
"If you ask me personally whether I could continue it, I would say I
would find it difficult, because I have been feeling that what I have
been doing as a doctor has been wrong for many months, which is a very
difficult position for me to be in.
'Difficult dilemma'
"That is not just my opinion, but the opinion of many medical
professionals who are directly involved in his care," he added.
He also said he would find it very difficult to attempt resuscitation
if he was asked to on the child but that it was "a very difficult
dilemma".
Dr S also claimed baby MB did not have the cognitive features normally
seen in children with this type of spinal muscular atrophy.
He said in his view, MB's cognitive function "does not appear normal",
but it was impossible to assess because of the baby's inability to
respond.
Last week, Mr Justice Holman who is hearing the case, said it could be
a landmark one as it was the first time a court had been asked to make
a life or death ruling on a child who has near or full cognitive
function.
His incurable condition, which affects one in 6,400 newborns, is set to
lead to almost full paralysis.
It is a recessive genetic condition passed to a baby when both its
parents carry a certain gene.