Monday, June 8, 2009

The Gamble? - The Katie Trebing Story

Lets get started by looking into the story of the Trebing family. You can either watch the video and/or visit the Newsday link below in which reporters recount and discuss the Katie Trebing story. Enjoy!

Click on the Newsday link below to read about the Katie Trebing Story:,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?
Judy: When I first heard of this topic, I was trying to sound wise stating, "you never know how you'll react or the decisions you may make until you are actually put in that situation." Noble right? Then I thought about it a little bit more and I hypothetically thought that I wasn't opposed to the possibility of going through IVF and PGD to create a child in order to save a child. However, I thought I would have to draw the line somewhere and I would do so by consenting only to cord blood transplant. It is tough though. Even as I was just typing that last comment, I was like "what if that doesn't work and my ill child is not cured, I can't stop there, what's one more procedure?" That's what is so scary to me. You get so consumed in the entire process and the emotions involved in saving your sick child, that you may loose the ability to know when to stop. In the book My Sister's Keeper, Jodi Picoult portrays a family where the savior sibling was created to save the life of her sister by undergoing cord blood donation, blood and bone marrow transfusions, and the last straw being the donation of one of her kidneys. When faced with an extreme, situation as this, where do you draw the line to uphold ethics and human rights of the savior sibling?

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.


  1. very interesting stuff... when i return back to work i am going to look more into this topic.

  2. This is such a tough question! I guess if I were a parent, I would definitely use the cord blood and a bone marrow transplant from the savior sibling to cure their sick brother / sister. I have a harder time saying I would make the child go through an organ transplant, but I guess if it were a matter or life or death, I would. I think I would have to take into account the risks / benefits as well as the age of the savior sibling. If they were old enough to understand and make this decision, that would definitely bring another element as far as this question goes. However, I know I would gladly donate an organ to either of my sisters if they needed one! ~ Sarah Goodstein

  3. I think the biggest problem for me is the fact that you're basicly designing a child to have the specifications that you need in order to save your sick child. I would be ok with deciding to get pregnant again and letting nature take it's course...If the child you have happens to be a match and can help the sick child then maybe it's meant to be. But doing genetic testing and basicly throwing away the "children" that aren't what you need is wrong. I know that sounds like it all comes down to when you think a human life forms and the whole abortion issue, but thats not my point. My problem is with having different embryos that all have the same potential to become a child, yet being able to choose which one of those is used just because it's a genetic match for your sick child. I think that gives us too much power and allows us to play God a little more then we should have the ability to.

  4. Nicely put Lisa! That was pretty much a nice segway into the new post this week..thanks for the intro :) Can I play devil's advocate for a little bit? So you commented about "letting nature take it's course" and how maybe it's meant to be one way or another and my point may seem a little far-fetched but let me try this (if it doesn't make sense, just disregard :) So if you or a loved one are diagnosed with pneumonia or even cancer, do you let nature take it's course? And just wait and see if it's meant to be that you survive without doctor's "playing God." I think it's interesting how we all are able to pick and choose to what extent we consider "playing God" ok. Just like you said how PGD and savior siblings "allows us too much power and allows us to play God a little more then we should have the ability to." But where and how do you draw the line where we're "playing God" too much? Isn't it just way to subjective?

  5. I do think your right Judy, we are possibly playing God by taking action against illness. Survival of the fittest, right? Those who are strongest are those who survive? But I feel like with illness it comes down to a person's choice. If you or I or someone we love are sick then we often choose to seek help and get better. Doctors may be playing God but they aren't trying to create perfect life, they are trying to improve the quality of life and make you well. They are not choosing who lives and dies based on how you perform in society or how fit you are. If they did that and were allowed to pick and choose who they treated then that would be a different story. Instead they are just trying to make sick people feel better, most times for which people are greatful. If you don't want to get treated for your illness and want nature to take its course that's your choice. With the savior siblings, the "children" are given no choice. It is up to a scientist and his test results to decide who is choosen and who ends up in the biohazard bag at the end of the day. So to summarize and answer your question, yes it is all subjective. But for me, free will and having the ability to ask for help are very important. I guess I draw the line where its not right to act as a "creator" but it is ok to act as a "maintainer" if that makes any sense at all.

  6. i say let people do as they please, and let evolution take its course. if someone who has the biochemistry knowledge or the money to hire a lab to engineer savioring siblings then more power to them; they are evolving to the next level of human existence.