By Carol A. Cates, MSN, MBA, RN
Chief Nursing Officer
Odessa Regional Medical Center
I love being a nurse except for one thing. Sometimes I know way too much about what can go wrong. For instance, every time my infant grandson spends the night, we have so much fun, but I never sleep well because a little voice in the back of my head worries about Sudden Infant Death Syndrome (SIDS). His first birthday is in a little over a month, so I will be very glad when that milestone is behind us, even though the risk is not completely gone. It’s just scary that every year in the US we lose infants and children for no reason anyone can explain.
After age one SIDS becomes SUDC, Sudden Unexplained Death in Children, and while the risk for SUDC is less than 1/3 that of SIDS, it is still a risk for children all the way to age 18, though it is most common from ages 1-4. The age cut off is really the only difference between SIDS and SUDC. They are both “diagnoses of exclusion”. In other words, the diagnosis is given when everything else is ruled out. We have learned over the years that SIDS and SUDC can be related to carbon dioxide trapping during sleep which has led to keeping cribs free of soft objects like bumpers, blankets, and pillows, and having babies sleep on their backs. There is also a possible link to seizures and epilepsy with SIDS and SUDC. But there is still more we don’t know than we do know when it comes to SIDS and SUDC. About 1,400 children die each year in the US of SIDS and another 400 of SUDC despite all we have learned.
This is why the research on SUDC that shows a genetic link is so exciting. A team of researchers at New York University’s Langone’s Comprehensive Epilepsy Center found there was a link between SUDC, epilepsy, and sudden cardiac death when they combined the results of hundreds of past studies. Because of that link, this research team focused on examining 137 specific genes that are related to cardiac arrhythmias and epilepsy. They found that children who died from SUDC had ten times the number of genetic abnormalities in those genes than those of “normal” children. Those mutated genes seemed to be mostly in those that control how calcium channels function in brain and heart muscle cells. Normally, when cells receive a specific signal to transmit messages or contract, they open the calcium channels, and calcium molecules move quickly through the channels creating an electrical current. In nerve cells that current is what sends messages from cell to cell. In heart muscle cells, that signal allows for a coordinated contraction among thousands of cells which causes a heartbeat. In the cells with the gene mutation found in the SUDC children, however, calcium channels open more slowly, thus prolonging the time that the cells have current running through them. That can lead to irregular heart rhythms or the heart stopping suddenly in heart muscle cells and has been linked to seizure activity in nerve cells.
The reason this is so exciting is if there is a genetic link, we might be able to avoid or even stop the problem. Kids could be screened for those mutations and be placed on special monitors, especially while they are sleeping (91% of SUDC deaths occur during sleep). With monitoring, if those kids have a life-threatening arrhythmia or seizure, parents can be alerted in time to start life-saving efforts and seek medical attention. The research into calcium channel function could also lead to preventative medications that increase the speed of calcium channel opening in these kids. Research scientists might even be able to find a cure where we stop the problem altogether.
Some of the worst days I can remember throughout my career have been related to SIDS and SUDC because it is so devastating to everyone concerned. It feels so senseless when there is just no reason that anyone can come up with that caused that little person to die. That we might be close to finding out a reason for SUDC and with that a solution is beyond exciting. It is miraculous.
