Notes from Dr. Rubens

Note From Dr Rubens Responding to Seattle Times Article


Written on April 5, 2015

I have received so many phone calls and emails in response to the Seattle Times article. I apologize that I cannot reply to everyone but I will do my best over time! I also cannot thank you enough to those that have made donations, it is an enormous help and means a lot to me to have the support.

Important note: I have had many emails about where to go and how to get a hearing test for SIDS. I need to clarify that there isn't a hearing test for SIDS, at least not yet. A huge part of our research is looking into the possibility of applying the newborn hearing screen test to identify SIDS prone cases. We have a lot of work to do to explore that possibility. This is a major area for which we are seeking funding.

I have received many emails that people have attempted to make donations here on the sidsguild.org website without success. Just to post that it only works from a computer not a cellphone; apologies for that!

Questions about usage of the term suffocation:

I can see how there could be some confusion about the use of the term suffocation in the newspaper article. In a nutshell and hopefully to dispel further confusion: When I am referring to suffocation, I am talking about the gas mixtures inside the baby’s body. I am not referring to suffocation caused by something the parents could have done differently. Oxygen can decrease and carbon dioxide can build up in any baby; for example, if they have a chest cold or other infection. I am referring to when a baby dies and the parents have done everything right, there is nothing more that they could have done, and it’s not anybody’s fault. As an illustration and to make the point, babies still die from SIDS if they are sleeping in the supine position, in a crib and there is no smoking environment or any other risk factors. This is the most important scenario for us, the researchers, we need to investigate and understand if we are going to solve this problem.

I do believe there is something different about the SIDS cases that leaves them at risk, so they are not able to respond to the lack of oxygen in their body compared to other infants. From my research so far; even a highly-trained anesthesiologist (with all of the monitoring that we currently have available) would struggle to resuscitate a baby with the SIDS predisposition from a fatal event. We need more sophisticated monitoring in order to pick up a potential crisis early; at the very least a different configuration of the currently utilized monitoring to detect the problem early enough to be able to prevent it in a SIDS baby.

I see this as a major part of my work; to understand the cascade and sequence of events in the SIDS cases so that yes, ultimately we can come up with a way to prevent it. This is going to take some time and a lot of further research to really understand and find the correct method to detect (an early warning system) and prevent a crisis.