On July 31, 2009 our beloved babysitter found baby Will unresponsive when she went to wake him from his afternoon nap. A thorough death scene investigation and autopsy revealed that Will neither suffocated nor choked to death, and a toxicology screening revealed no foreign substance was present. Will was 82 days old and aside from a mild cold he was otherwise in perfect health.
Will was sleeping on an adult mattress, but he was sleeping on his back, and it was determined neither the mattress nor sleeping environment played any role in his death. Will showed no signs that he might be susceptible to Sudden Infant Death Syndrome (SIDS), and nothing currently known could have been done differently to have prevented his death.
Our family and friends had experienced every parent’s worst nightmare, and the death of Will proved to be everything we feared. Our collective loss was instantly debilitating and continuously devastating. But it quickly became apparent to us that the only way to make it through this incredible heartache was to move forward.
Part of moving forward for us meant we had to join the efforts to solve and ultimately prevent SIDS. We read everything we could find about SIDS. It was clear that much good medical research had been done and that even more was planned. Promising theories exist and we feel confident that the SIDS mystery will be solved.
Unfortunately, what was also clear is that the research required would not move nearly fast enough without significant incremental funding. In the United States alone, a baby dies from SIDS every 3.5 hours. With such a severe death rate, even one day longer without an answer for SIDS is too long. SIDS is the number one cause of death in children age one month to one year, placing it is easily among the most legitimate of medical emergencies, yet it only receives around $17 million in annual federal funding.
In the days and weeks following Will’s death, through our tears and hurt, and with much prayer, we began to see a role that we could play as public advocates and fundraisers. We came to believe the fact we named our son Will was in some ways divine intervention because of the powerful meaning of the word “will.” An initial vision for babywill.org was crafted and we hoped to join the fight against SIDS in a meaningful way so that no more parents experience this incredible loss.
While life without Will continues to be a daily struggle, we draw strength from the friendship and solidarity of other SIDS families that we have met, and the kind hearts of our amazing friends and family who have held us up when we could not find the strength. We have come to recognize that we are on an epic journey of recovery from our grief. But the prospect of the medical and forensic professions someday solving SIDS motivates us to give what we have of ourselves to join others making a difference against this terrible problem called SIDS.