Baby Ordered to Die Today

This is what the parents of an unnamed baby will face today.

Parents battling to keep their seriously ill baby alive have failed to overturn a ruling allowing him to die.

The nine-month-old boy has a rare metabolic disorder and has suffered brain damage and respiratory failure.

Source: news.bbc.co.uk

In the wake of a judgment and two Courts of Appeals verdicts, the parents have no choice now but to let their baby die in peace. The baby had an extremely rare condition (unidentified for legal reasons) and suffered major respiratory failure and brain damage.

The parents, (also unidentified for legal reasons) had been told that so rare is the condition, that only one other child has ever been identified with the same condition by modern medicine.

The parents had this to say about their baby:

"We are and always will be convinced that despite his desperate problems his life is worthwhile and is worth preserving as long as it is possible to do so without causing him undue pain. "[...]

"That was the real argument between us and the doctors - they think his life is intolerable and that his disability is such that his life has little purpose; but we, along with some of the nurses, believed that he experiences pleasure and that he has long periods where he was relaxed and pain free."

Source: news.bbc.co.uk

Treatment will be withdrawn from the 9 month old baby boy and he will die sometime today.  Does anyone else feel that cases like this sound like G-d is being replaced by judgments from an 'Earthly Court'? This story has certainly made my flesh crawl.

The hospital had wanted to discontinue treatment in December, but the parents felt that they had to fight for their baby to be given every possible chance.

Relationships with the doctors and staff became very difficult and there are lots of issues which still worry us, but we think we did the right thing even though we were repeatedly told it was hopeless and that we were being irresponsible in not following the medical advice that he should be allowed to die.

Source: westerntelegraph.co.uk

Interestingly, some of the nurses at the hospital supported the parents feelings that the baby does experience pleasure and that there were long periods where he was relaxed and pain free.

The parents claimed that since there was only one other child documented to have had the disorder, that everyone is "unknown territory."

Is this sufficient reason to let a child die, just because no-one knows what to do next?

As judgement was handed down for the third time, the anguished  parents painfully waited outside of the court, unable to hear the judgment again first hand.

The judge acknowledged the hearing seeking permission to appeal had been conducted "in a brusque, uncaring, unfeeling way on a crude issue of law".

But he said he would like to have addressed them personally and asked their lawyers to pass on the message that it was impossible not to feel the "deepest sympathy for their predicament".

Source: news.bbc.co.uk

Predicament?  Is this the only way that the judge acknowledged this case?

Why not call it what it is:  tragic circumstances?

What about an inability to feel the horror of what will be the death of their child today?

Last year, another baby with a rare disorder also made the news:

THE parents of a 13-month-old boy born with a rare genetic disorder which may see him die before reaching adulthood have spoken of their ordeal.

Ross Phillipson has a vital enzyme missing in his blood – a peroxisomal disorder which has left him with a number of complications including blindness and impairment to his hearing.

Source: journallive.co.uk

Should this baby have been sentenced to death too?

Here is another case back in 2002 where a baby had a rare disorder known as congenital adrenal hyperplasia:

Most new parents are excited to share the news of whether their newborn is a boy or girl.

But for Adina and Robert Hayton of Mesa, the joyous occasion turned into a nightmare.

"It was very scary, it was very embarrassing and we asked for people to stay away from the hospital," Adina said. "They told us at the hospital not to call the baby 'her' and to instead say 'the baby' or 'our baby.' "

The gender confusion was a result of Baby Hayton being born with a rare disorder known as congenital adrenal hyperplasia, which sometimes causes ambiguous genitalia.

Source: caresfoundation.org

Here are some questions which do not necessarily reflect my own feelings and views.  Rather, I have asked the questions to encourage debate:

• Why wasn't further research into the disorder conducted in the 9 months that the baby boy lived?
  
  


• Where is the line drawn to allow babies to die?
  
  


• Why is the defining decision not left to parents, who have to petition the court to try and keep their baby alive?
  
  


• Why are the details of today's story shrouded in legalese mystery, yet details of other children with 'rare disorders' are freely available?
  
  


• If you were the parents, would you allow the hospital's rhetoric; (that it's better to let your baby die,) eclipse your own feelings?
  

I not only look forward to hearing your views, but I also encouraging debate.

Sources:

Western Telegraph
Parents: Our Agony Over Baby Ruling
Press Association 2009

BBC News | UK
Baby's Right to Life Appeal Fails

Journal Live
Parents' Fears for Baby With Rare Disorder
by Paul Loraine

Image Sources:

Western Telegraph
Parents: Our Agony Over Baby Ruling

Press Association 2009

BBC News | UK
Baby's Right to Life Appeal Fails

NowPublic

Tags: Law | Health | hospital | baby | World | UK | england | babies | blood | brain damage | enzyme | Rare Genetic Disorder | 9th US Circuit Court of Appeals | metabolic disorder | respiratory failure | Ross Phillipson | peroxisomal disorder | congenital adrenal hyperplasia