Sunday, April 12, 2009

Canada: Organ Donations and Playing God

This week has had pretty much most of Toronto and others watching very closely as a hospital, The Toronto Hospital for Sick Children, also known as SickKid’s, a teaching hospital which is affiliated with the UofT, University of Toronto, and is the second largest hospital-based pediatric research facility in the world. I am a supporter of this facility and lucky to have this at my disposal but even luckier and blessed that I have never ever had to call upon its services, fingers crossed. Many... many people have not been as fortunate.

The media attention this week surrounding it has been exceptionally elevated and with all eyes watching as their ethics were being put to the test with two families both struggling with very ill little adorable newborn babies with decisions ripping at their hearts. The media huddled constantly outside waiting to pounce on doctors, hospital officials or either family willing to stop and tell their story to the rest of Toronto which was eagerly waiting, privately praying for a positive outcome. As most people are aware the media can be kind or they also can be like swarming piranhas hungry to be fed to sell those papers. Papers sell quickly on others' emotions and drama and this story held lots of drama!!

Kaylee Wallace, 8 weeks old, has a rare brain malformation called Joubert Syndrome, which is in-herited and causes her to stop breathing. Doctors told her parents of her expected "imminent" death once taken off life support, she wouldn’t be expected to breath on her own and her passing would take place within ½ hour (about 30 (Thirty) minutes). Her parents desperately wanted to save another child by donating her heart. They were told how hard and short a life she was going to live and to expect the worst at any given moment as her situation could turn grave.

Baby number two, Lillian O’Connor, top of the list on the donor transplant chart, waiting for a heart. Kaylee’s dad had spoken to the O’Connors after meeting them in the hall and offered them his daughter’s heart, this is illegal, unethical and is not protocol, and the child, his daughter is still alive. On an editorial note: Seems we are playing God here: deciding when and if someones death is going to occur for whatever reasons! Her life could likely be unstable for days, weeks, months only God truly knows.

The parents of Kaylee Wallace, visibly shaken with grief over their child and the loss that was to happen decided donor donation was the route they were to take, their baby's heart could possibly save another baby.

How did I feel about this, as a mother and as a catholic? I felt sick inside for the family that was going to lose their child but I was also happy about the child that might possible be saved by this donation, I like the whole idea of organ donation if it is ethically done. I did wonder as a catholic if this was morally right. We were allowed to donate body parts? Time to call on my “saint” for some advice, my heart was telling me one thing but my brain was asking me what would God want.

This whole case seemed to be really taking its toll on me as a parent. Life and death decisions aren’t my strongest and I have never really discussed or shared them with anyone. I wondered if the death of this child Kaylee, being removed from breathing support, was going to save the life of this other 1 month old child Lillian O’Connor, more than that, was this right? We were taking this child’s breathing apparatus away from her? Was she dead, or was she brain dead like most are when they justify this type of action? No, she was not, she had a brain disorder which caused her to stop breathing, that is different than brain dead, is it not?

What happened and the question has now become should it have even happened is they took this child off her breathing support and she continued to breath on her own, they did use special prongs to promote normal breathing but she was fighting to survive. This shocked everyone involved in this case and it all changed what was to happen next.

The moral, ethical and personal decisions around organ donations are complex and groups of medical professionals and families discuss this at great lengths. But maybe these as pointed out to me should only be discussed when the patient is dead. This child wasn’t dead, didn’t go into cardiac arrest and who was supporting her rights. I am in no way indicating at all that her parents wanted to see her die in any way. I think they were very much caught up in being told their child had no chance of survival by the hospital doctors.

This would have been the first heart transplant in Canada on a child.

I do believe that there was a possibility the doctors involved in this case began looking at it possibly with the sole purpose of learning new medical grounds with organ transplants ...maybe? It was discussed at great lengths, would the heart be suitable, is the donor appropriate? Usually donors never know the recipient but in this case they ended knowing. Both children were in the same hospital, just on different floors.

I strongly still believe organ donations are very very important and if we can save a life with them I think we should do it. If I die and there is some part of me that will allow someone else to live, I want them to take it, so I have signed my organ donation card.

The dust needs to settle quickly and this case needs to be looked at ethically and morally about organ donations and the rights of patients we take them from and realize we have no right to decide when a patient is to die, that is God’s job still.

Heart transplants or organ donations are usually done on people or children who are pronounced legally brain dead with no brain activity at all, transplants of patients who suffer “cardiac death” is a lot riskier because of the threat of organ damage.

By taking Kaylee off her breathing apparatus this would have caused cardiac death and presumably her heart donated but that wasn’t the case. There are some big huge lessons to be learned here, by everyone involved.
The press turned viciously onto the parents of Kaylee claiming they didn’t want to deal with a disabled child. Sick Kids spoke out and supported no doubt their doctors. Emotions were running wild, these parents were told to consider the amount of money that would be spent on this child when in the end it was imminent she would die, while they could be spending it and their time saving another child.

The hospital has now since removed Kaylee from the organ donations list and is treating her condition on medical grounds which are extremely different than donating organs' grounds. Before we quickly judge this family very harshly for their actions of promoting organ donations, we need to remember when a child is born with severe handicaps, sometimes horrific feelings happen, like guilt, sadness, worry about the future, all kinds of emotions and feelings surface, but the difference with this family is that it was all spoken very loudly with the press. The dad kept taking this live to the media for whatever reasons he felt very strongly about. I am unsure right now what exactly his point was in doing all that? I am sure they are very grateful they might possibly one day take little Kaylee home in the near future.

No one can predict the length of this child’s life but God. Her parents have claimed that if they had known how short lived their time with their child was going to be they would have opted to abort their child which we know is considered murder in our faith, these are words from the mouths of parents speaking out live and many people immediately judged them with their actions and reasons behind this. This comment has sent the media hunting and many others wondering if their push for this organ donation was in fact giving up on their child because of the sever handicap she has and her life would and will be?

My emotions were extremely torn in this high profile case. I decided to discuss it with the editor, apologist Marc Aupiais and his response is below:
Actually, It seems, even if she'd died had they taken her off, her soul is still present. One's soul makes one live. They stopped viewing her as a person. Personally, my reading says, it would still be murder to take her off the machine, as long as they can afford to keep her alive. Perhaps note the fog of war over what was happening. Fact remains, he was viewing a living human being as a therapeutic means.

Even if she had not recovered. Life is itself the value of intelligence and mobility which are designed purely to maintain life. Such a person is still alive, whatever function must be replaced. That which exists even as a vegetable state: is where man inherits his dignity, his rights. He would have been murdering her for her organs even had she not survived.

Note, this article deals with the ethics of this situation, not necessarily the legalities of the Canadian, or another legal system.

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