Tuesday, June 12, 2012

To Participate or Not?


When I went for Spencer’s pre-op appointment I was confronted with a question and now I am posing it to you my readers.  Sick Kids Hospital is conducting a research study on a drug called TXA or Tranexamic Acid. This drug is routinely given by surgeons and anesthesiologists intraveneously to decrease blood loss during surgeries. TXA or Tranexamic Acid is a safe drug. In many studies there have been no serious complications. It is used in all types of surgeries including open heart and lung surgeries with no serious problems proven to occur. TXA is thought to reduce blood loss by preventing blood clot break down. However, results of past clinical studies evaluating whether TXA decreases blood loss and the amount of transfusions are not conclusive. The purpose of this study is to find out whether TXA does in fact reduce the amount of blood loss and the need for blood transfusions or whether it is the same as a placebo.

 If we choose to do the study Spencer may receive TXA through his IV once he is asleep. He will randomly be assigned to be in one of the three study groups. Two of the study groups will receive TXA but at different doses. One study group will receive saline as a placebo that has no drug effects. They say that the study will not affect his operation or his care. In total they are looking for 90 patients to enroll in this study.

 They say this study will help other children down the road undergoing the same surgery but Spencer will not directly benefit from participating in the study.

This is the chart we received…

Now I pose it to you, would you participate and why or why not? I am leaning towards no even though my pediatrician says he would participate and would let his child participate. My fear is what if Spencer needs the drug and receives the placebo. They say they will not hesitate if they feel he needs the drug but if you were a doctor and you know there is a study wouldn’t you try to honour the study first? I feel those seconds, and that’s all they may be is seconds but they might be valuable to Spencer and his well being. This kind of thing scares me. I would love to say that Spencer was a part of something bigger and have the ability to help others but does it have to be at such a critical time?

5 comments:

  1. If you have the chance to help p our children in your son's position, then why wouldn't you? Especially if it doesn't affect your son's surgery or care. If people like you don't participate in studies nothing in the medical field will ever be advanced. What if more people participated in a study and something easier or different could have been done for Spencer. I mean come on. Do you really think a doctor would compromise care for a research study? That's just ridiculous.

    ReplyDelete
    Replies
    1. Sorry chance to help others ...

      Delete
    2. Go with your gutt it always knows the right thing to do. Your child is your world so you shouldnt have to think of others when his life experience is what is being affected.

      Delete
  2. The first comment above is not fair. They are dealing in hypotheticals. Your son is nine months old and as the parents it is your natural instinct to do what is best for him. Studies are great, however, the circumstances in which you agree to participate have to be acceptable. Perhaps if Spencer had to go into surgery to repair a broken bone, you may be more open to participating in a study. Since we are talking about surgery that involves the skull, brain and fragile soft tissue, then it is best to focus on his best interests. Besides, Spencer may very well grow up and become one of the world’s finest Pediatric Neurologists!

    ReplyDelete
  3. First I always think, listen to your gut. By the "sounds" of your other posts you are first a very caring mother and also the kind of person who wants to help/educate others, if I understand correctly that was the reason you started this blog. You know you have chosen the best hospital for Spencer's surgery. Sick Kids is known to have the best doctors and to help change the medical world for the better. My thoughts are that maybe Spencer was chosen for a reason. I could say I would do it but until put in the situation we never know. Good luck with all you decide! Lila

    ReplyDelete