Click on the Newsday link below to read about the Katie Trebing Story: http://www.newsday.com/news/specials/ny-katie-sg,0,1414219.storygallery
We thought it would be interesting to discuss possible perspectives of the key players that were involved in the Trebing case. Please share your thoughts here and anything you feel that we missed
- Parents: For parents of children who are chronically ill, in this case, Stacy and Steve Trebing, it is hard to sit back and be helpless to the sufferings of your own child. As a parent, you want to make things better for your children, to take care of them and to be able to say at the end of the day that ‘everything will be ok.’ For Katie, she will not be ok because she has a rare disease that requires her to have monthly blood transfusions or she will not survive. Even with monthly transfusions the major side effect is that it will slowly destroy her organs and most likely take her life by the age of 40. What if you, as a parent, found a way to help your child by scientifically conceiving a child that can possibly cure your ill child? The thought of creating a life to save a life doesn’t seem so bad right? The choice is to do nothing to try to cure your child or to take action with the support of the latest scientific reproductive technology. It is a tough decision to make as a parent to decide whether or not to take the gamble. However, for parents that want more children, the gamble might not be so difficult. Where is the harm in creating a child that you already planned on having in the future, especially if that child will be a perfect match for your sick child.
- Physicians: For the physician, using the latest scientific technology to save a chronically ill child is not a tough decision to make. From the Newsday report on the Trebing story, Alan Fleishman, a pediatrician and member of the New York State Task Force on Life and the Law, states that physicians in the situation of savior siblings “often make sacrifices for one child, especially one with a chronic illness.” What is the harm in creating a child who can save their sister or brother’s life? If the physician is not causing harm to the savior sibling and the parents want another child anyway and will love the child the same, is it wrong to allow the process to happen?
- Katie: For the chronically ill child, such as Katie and her diagnosis with Diamond Blackfan Anemia, the decision to perform a bone marrow transplant versus monthly blood transfusions does not appear to be a difficult decision. Mandatory monthly blood transfusions that carry the risk of a shortened life span OR a bone marrow transplant that will possibly cure her condition allowing her to live as normal of a life as she can. Sounds like a no brainer right? But what about the complications associated with the bone marrow transplant and from the chemotherapy that Katie will have to undergo? There are many complications from these procedures such as: her hair falling out, infertility, increased risk of fatal infections, increased risk of cancerous tumors in the future, graft rejection, organ poisoning, veno-occlusive disease, or even death. 1 out of every 10 children who receive a bone marrow transplant from a matched sibling will not survive the procedure. Therefore, the question must be raised, where's the harm of taking the conservative route? What if future research unveils a new treatment that may cure this disease without a procedure with so many associated complications?
- Christopher: For the savior siblings, they are brought into this world being "engineered," created by man and by science in order to save their future brother or sister. Their life has an objective, to be a savior sibling and they do so without a choice in the matter. The dilemma continues as whether the cord blood will be sufficient to fulfill their "duties," a painless, non-traumatic procedure. However, what if cord blood is not enough and bone marrow transplant is necessary? Then a more invasive procedure is performed in which bone marrow is extracted from the child's hip under general anesthesia. Not only is this procedure painful to the child but one may wonder, how often will procedures like this be warranted? Or perhaps, what other procedures may be asked of the savior sibling to save their ailing sibling? Where do you draw the line in what these children must endure? When will enough be enough? And who will put their needs above the needs of others?
Lili: Last year Judy lent me a book called My Sister’s Keeper by Jodi Picoult. The book was a tear-jerker and made me think about the ethical issues behind savior siblings, but once I put the book down I didn’t give it a second thought. It is interesting how one can easily brush aside ethical matters especially if that issue does not pertain to them or their lives. However, as I started to do research for this project, the issues portrayed in Jodi Picoult’s novel and my thoughts on savior siblings came rushing back to me. I remembered thinking how awful the savior sibling must feel knowing the fact that they were conceived specifically to save their sibling. That the savior sibling may possibly believe that they were a second thought in the scheme of things. In the book, the parents, especially the mother was obsessed with saving the ill child that it seemed that the other children were just shadows in the family. My view’s against the idea of engineering a savior sibling has been slowly changing as I learn more about the successful outcome of the Trebing family. The Trebing’s took the gamble and now Katie is predicted to have a long and full life. However, at the end of the day, I still struggle with the thought of “things happen for a reason” and that maybe we should not be playing the role of the creator. Stick with me as I begin to break down my thoughts over the next couple of weeks.