Sudden Infant Death Syndrome (SIDS) Support Group

I haven't posted anything on here in a very long time but I had something I wanted to share. I have been in touch with a researcher that has identified a right sided hearing suppression in 31 SIDS babies (compared to other infants) at birth. Even though it is a research finding at this point, to date, the right sided hearing loss is the only detectable difference in SIDS babies while they are alive. This may be detectable with a test that is currently in use (newborn hearing screening).

The newborn hearing test is a universal screening test that is undertaken in every state in the United States. If high risk babies (for SIDS) could be identified at birth by the newborn hearing test, it would be of enormous benefit for doctors to be able to examine, monitor and apply focused pre-emptive measures (controversial I know but hang in there with me) to susceptible babies soon after birth. The researcher is also examining the relationship between the inner ear and SIDS in relation to why SIDS babies are dying and has found some fascinating results. He is hopeful that this will enable us to create and utilize defensive measures against SIDS.

Many of us have been told that there is nothing a person can do to prevent SIDS. This may be true however, if it would have been possible to identify Alia’s heightened vulnerability to SIDS through the hearing test, I would have wanted to know. It would have made me paranoid but I would gladly suffer through that then the pain of losing her. Even if I still lost her to SIDS after placing her on a monitor and doing whatever pre-emptive measures possible, at the very least I would have the solace in knowing that I did everything I could. The pain would not have been any less, but some of the “what if’s” that haunt me have been minimized.

The newborn hearing test is not yet ready to detect SIDS cases, the finding needs to be analyzed in more detail to do that. The researcher, Dr Daniel Rubens has been trying for some years to undertake a large scale definitive study of SIDS newborn hearing and has so far been unable to do that in the United States. The reasons are that the hearing test equipment needs (1) to be set to provide detailed hearing (frequency) information not just a Pass/Fail result and (2) to be made available for the researcher to analyze it. This is not currently the case, however we know it is possible to implement these two features, since this can be done in the United Kingdom and they are using the same equipment as is used here in the United States.

Each state has its own newborn hearing screening program. Dr Rubens has approached each of the 50 states and came the closest to obtaining the necessary information in California. He was able to find SIDS cases in the state of California but has not been able to obtain the detailed hearing test information for the reasons above. The hearing test only provides a "Pass/Fail" note and that stays inaccessible in the patient’s chart. The researcher has to approach each hospital individually where the baby was born and has little success with the hospitals releasing the hearing test information. It is also a logistical nightmare to approach each hospital individually.

What we need is to have the detailed hearing information sent to a central location so all the hearing tests of SIDS babies can be evaluated. We also need non SIDS cases hearing tests to be collected so the SIDS tests can be compared to them.

How can you help? I am asking if you would be willing to sign a letter stating that you support the above hearing screening research and want changes to be made at the state level in support of this research. Dr Rubens would also be more than happy to present his findings to us and I am looking for a way to organize that if there is interest. Please let me know if you would be willing to sign a letter of support. If interested you can google Dr. Daniel Rubens (he is in Washington state) and read about some of his research, however, some of his latest findings have not been published as of yet because much of it is very new.
Posted on 07/25/12, 01:02 pm