Page last updated at 17:18 GMT, Wednesday, 15 March 2006

Sick baby's chance at life

Hospital bed
Baby MB has spent most of his life in a high dependency unit

The parents of the sick baby at the heart of a right-to-life case reflect on a High Court judge's decision to keep him alive.

To his parents, Baby MB is a normal little boy who means the world to them.

He has a loving family which enjoys his company, brothers and sisters that play with him and favourite toys and TV programmes just like any other child.

There's just one exception - he has the severely debilitating condition spinal muscular atrophy.

"It's what's going on inside and not what's on the outside," his mother explains.

I really thank the judge for coming to this decision
Baby MB's mother

It was their success in persuading High Court judge Mr Justice Holman of this that saved the 19-month-old's life.

The child's mother described the moment she heard the judge give his ruling, after he spent an agonising two and a half hours setting out his reasons for reaching it.

She said: "At first I felt my heart going and then I just felt like jumping up when he did say it.

"I really thank the judge for coming to this decision."

Doctors at the hospital where he is being treated argued his life, sustained by invasive ventilation, was too intolerable for it to continue.

But his family said they know a side of the little boy that neither the doctors nor the impartial medical witnesses never saw.

His mother said she was always confident the judge would come to the right decision because she knew of what her son was capable.

Jumping for joy

She said he was responding to treatment and could wiggle his fingers and toes and followed her round the room with his eyes.

"The doctors weren't there to see it but in my eyes he did (respond) - not just because I wished it but because I saw him do it," she said.

The baby's father described how the whole family enjoyed visiting him in hospital.

"It's not like we suffer to go there - we enjoy his company as well.

"You can't get from him in five minutes what we experience from him - like any child, he needs time to know you," he added.

The reaction of his brother and sister to the decision is perhaps a good marker of how much this little boy is loved by his family.

"When I phoned up I couldn't even hear what they were saying because they were jumping around," said his mother.

"We have had a lot of people phoning us they've been congratulating us - a couple of SMA families too."

He needs to live his life, to see what life's like before anyone can judge him
Baby MB's mother

However, a total of 14 medics, including two independent doctors called by the parents, told the hearing his quality of life was so poor he should be allowed to die.

Baby MB's parents are all too aware of their son's ability to defy the medical experts as well as the odds.

And in the light of the fact that the prognosis for Baby MB is not good - there is no cure for his conditions and it is only set to worsen - his father said: "I hope he does prove them wrong.

"Until now he has proved them wrong.

"When he first came to hospital they said he would not live past his first birthday - now he's nearly 19 months old."

He also described how he had survived without the aid of his ventilator for 11 hours.

'Day by day'

And in a sense, the judge's ruling give the child a chance to show what he is capable of.

His mother said: "I've always thought he deserved to have a life rather than to have life taken away.

"To be still inside a hospital cubicle for so many months - he does need to go out and see other things.

"He needs to live his life, to see what life's like before anyone can judge him."

But both parents are all too aware that the future may not be as good as they hope. There are further tough decisions ahead.

In making his ruling, the judge warned that there were procedures, such as resuscitation or intravenous antibiotics, which he suggested would inflict pain on the child and should not be carried out.

Reacting to this, the baby's mother said: "We can't think about the future because no one knows what it's going to be.

"We have to take it day by day."

But when asked if she would ever change her view about her child's right to life, she said depending on how he deteriorated: "Maybe in the future."

An interview with the parents of Baby MB can be seen on the Six O'clock news on BBC One.

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