Who Gets to Decide?

I just saw this story on the news and I'm SO upset by it I just had to blog about it right away.

Here's what I understand from the report on TV, a few more details than the article:

A Montreal couple had a baby in 2007 after a very difficult labour which deprived their baby girl of oxygen for about 3o minutes. As a result, little Phebe now has cerebral palsy.

After her birth, the baby was on life support and had to use a feeding tube. The baby, surprisingly, then began to breathe on her own. However, she still needed a feeding tube. Specialists advised the parents that their baby girl would not have any quality of life, that she would probably be blind and/or deaf. They gave them the option of pulling the feeding tube and letting the baby die.

The parents then decided they were going to choose this option to pull the feeding tube and let their baby die because they didn't want her life to be full of suffering.

Then the ethics committee of the hospital decided the parents were NOT to be allowed this option and after a month in the hospital, the parents were told they were to take their little girl home. She is now 16 months old and neither blind nor deaf, not to mention being just the cutest little baby ever, don't you think? She has many developmental difficulties associated with her Cerebral Palsy and requires constant medical care.

The parents are now expecting their 2nd baby and are worried about how they are going to survive on one income. They are suing the hospital for not being able to have the last say on the fate of their daughter Phebe. I am not clear on WHY they are suing - are they suing because they are upset their daughter survived after not being permitted to follow through with their original decision? Or are they suing because of the associated medical costs of that decision? I don't quite understand.

Quite frankly, I'm confused and sickened by this entire story. Yes, it is very unfortunate this couple had a terrible experience with the birth process and ended up with a baby with cerebral palsy. No one wants to face that. However, the fact that they were choosing to essentially STARVE her to death by pulling her feeding tube makes me ill. They said she was breathing on her own at the point in which the specialists advised them this would be the best choice. And might I exclaim, WHAT KIND of FREAKIN' QUACKS were these so-called "doctors" to want parents to decide to pull a feeding tube on their newborn?

I'm glad the ethics committee stepped in. I know parents have to make some very tough decisions sometimes but I think in this situation, their minds MUST HAVE BEEN clouded over or somethin'! Otherwise, basically couldn't any parent with a baby born in a similar situation be allowed to just not feed their baby. A newborn is obviously completely dependant on us for nourishment. If my friend, who had a baby with a cleft palate and who couldn't feed "normally", decided she didn't want her baby, could she have also pulled the feeding tube? Could I, because of Sarah's kidney issues and future problems, have decided to just simply not feed her? Like, what the hell is happening here?!

Brutal, I tell ya! I'm so disgusted, I'm practically in tears over this. This precious little girl is adorable. Her life is as valid as any other child, any child who is perfectly healthy. Yes, the parents are struggling but COME ON, this is your baby!

So, who gets to decide? And at what cost? Do you agree or disagree? I welcome your thoughts.