Baby Ordered to Die Today

by Swan | March 21, 2009 at 08:11 am

1096 views | 79 Recommendations | 19 comments

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.

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."

Treatment will be withdrawn from the 9 month old baby boy and he will die sometime today.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.

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".

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.

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.

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

0 See all footage | View Slideshow

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Mary Richard

at 09:03 on March 21st, 2009

Such a sad story, more so because the parents don't get to make this agonizing decision themselves. Knowing he has periods free of pain only makes the court decision even harder for them to live with.

Why do the courts involve themselves in such a personal matter - I think it should be between the parents and specialists.

Swan

at 09:16 on March 21st, 2009

Hello Blue Crush,

This story is just killing me - I'm thinking of little else, knowing the parents will be consumed with grief today and for months or even years. I wish there had been more news coverage - even damning news coverage of the courts interfering in this tragedy.

I agree with you, the decision to kill this child, should have been with the parents - not the courts. This baby at the very least, could have been responding to the love his parents were showing him.

Thank you for reading the article and I appreciate your comments.
~ Swan

Mary Richard

at 09:26 on March 21st, 2009

I watched this on BBC last night. They mention a case where a girl baby survived, despite what the doctors said. So, if they only had more time ...

Swan

at 11:57 on March 21st, 2009

Thank you for this video BlueCrush ..... yes more time, time the courts denied this baby.
~ Swan

infomatique

at 13:36 on March 21st, 2009

Swan,

This is a really sad story that requires much debate.

I don't believe that anyone actually killed the baby (I assume that you meant "let the baby die"). My understanding was that the medical staff had concluded that it was wrong and cruel to extend the life of the child using artificial means and therefore they were seeking approval to switch off the life support systems.

I think that it was right and proper for the courts to be involved otherwise medical staff could just tell the parents that the hospital facilities were no longer available and send them and the baby home.

Here in Ireland it is common for the courts to over-ride the wishes of parents who refuse to allow their children to have blood transfusions.

Amy Judd

at 09:09 on March 21st, 2009

Wow, this is a hard one for sure...

I think parents have the right to make the final decision as it's their child, unless the child is in pain and then the doctors could step in to give their opinion. Ultimately I think the parents should have the final say though.

Karl Gotthardt - albertacowpoke

at 09:16 on March 21st, 2009

As you may be aware, we recently had a case in Quebec where the parents, who wanted their baby die, were overuled by the physicians. I think it's hard to play God on either side of the issue.

Swan

at 09:17 on March 21st, 2009

I agree with you Amy - all the way.

Thank you for your comments, they're always appreciated.
~ Swan

Karl Gotthardt - albertacowpoke

at 09:13 on March 21st, 2009

I think the courts got involved because the parents and the specialists were at odds. I find it hard to come up with an opinion on this story. I think you have to live this in order to fully appreciate the impact. In any case, perhaps more time should have been given to see if anything was medically possible for this child. I just hope that cost of healthcare did not enter into this decision.

Swan

at 09:25 on March 21st, 2009

Hello again,

I have a really uncomfortable feeling because so many details are missing in this story - details that are being kept from the public and I don't know why.

Thank you for your continued comments on the article.
~ Swan

A. Tran

at 09:58 on March 21st, 2009

Thanks for the story. It is an awful predicament although I find it unusual that the parents do not have any final saying on the fate of their child.

As someone raised the issue of costs, could it be that the system is unable to sustain further treatment, if any, on the baby?

Swan

at 10:14 on March 21st, 2009

Hello Pythiian,

I'm not sure. The UK has socialized medicine, so the cost (I think) will have been borne by the government, not the hospital and not the parents.

Thank you for stopping by and asking a very pertinent question.
~ Swan

A. Tran

at 10:31 on March 21st, 2009

That is what I meant in my earlier reference "system" in that the government is footing the bill, which could explain the Court having the final say, rather than the parents? Although, I'm just wondering and guessing .... based on the story. Thanks.

duo

at 10:13 on March 21st, 2009

Thanks for this article, Swan. It affords a good opportunity for people to think about what direction we want to take on life and death issues regarding health care.

I knew things like this would start happening when I wrote the article at the link below, although it was my hope that legal precedents would not be set so soon.

Be Careful, Bush Administration! Stay Back, Doctor Kevorkian!
http://my.nowpublic.com/world/be-careful-bush-administration-stay-back-doctor-kevorkian

The name of the game seems to be "get rid of terminal patients to relieve the national health care system of the financial burden of caring for people who have no reasonable expectation of recovery." First, living wills whereby patients can elect death in cases of extreme loss of health. Second, relatives were allowed to make life and death decisions for incapacitated patients in the complete absence of any proof that the patient would prefer to "die with dignity." Third, courts decide to withhold treatment and nourishment for people who are rendered useless and too expensive to maintain without consent from the patient or the patient's family. The world ran ahead to step three earlier than I hoped.

Swan

at 10:27 on March 21st, 2009

Hello Duo,

That was an excellent article you wrote, thank you for providing the link.

The whole topic of euthanasia is chilling in itself but I admit to telling my husband, that if ever I got to the stage where I'm becoming a long term patient who can only live because of assisted life support, with no chance of recovery, that I want him to pull the plug on me.

This would be my choice and not something decided by a court.
~ Swan

Swan

at 12:06 on March 21st, 2009

I agree with you Sara,

A living will is so important these days. I think that when it comes time to let a person pass on, the immediate family making the decision shouldn't have to be consumed with guilt for heaven knows how long.

If a person's wishes are made clear to the remaining family before they even get to that state, guilt doesn't enter into it - grief yes, but not guilt which can eat a person for years to come.

I see making a living will as a loving gesture toward the family.
~ Swan

Barry ORegan

at 11:29 on March 21st, 2009

Just terrible, and yet we have a god, guess he was bowling when this happened at conception.

CJaye

at 19:04 on March 21st, 2009

First, nine months is not enough time to even get stated on research. Research takes years. They should however start now.

Second, the line is drawn when there is brain damage and respiratory failure. You can't keep these babies or anyone on life support forever. I had a family member that we had to make that very difficult choice on. We had to remove him from life support he couldn't breath without it it broke out hearts.

Third, keeping in mind I'm a 25 year nurse retired, and volunteered with the Rescue Squad for several years. Parents don't always make the best decisions when it comes to turning off life support on their child.

I have no idea why the UK is being this way. In the US unless the family requests the information is given. So this tends to make me think only one thing, the hospital had no idea what this babies treatment plan should have been what it's prognosis was.

People have to look at the big picture, the baby is just a shell not to sound cold but it's true. I know the family doesn't want to except that but their baby isn't there anymore. Donate organs and let the sweet angel go.