Saving Babies: Chapter 3
"No one knows why my baby died"
Caught in the middle are thousands of grieving parents left without clear explanations for why their babies died.
"The autopsy report said 'undetermined causes.' It is a horrible, horrible thing to be told that no one knows why my baby died," said Angie Steffke, of Indianapolis. Her son, Owen, died mysteriously in 2003 at the age of 8 months.
Angie Steffke: Angie Steffke's 8-month-old son, Owen, became part of a new and disturbing pattern for infant death when he died in his Indianapolis, Indiana, home on Oct. 6, 2003. "A police detective told me that the state of Indiana no longer uses the term 'SIDS.' The new name is 'undetermined causes,' " Steffke said. "That really upset me because they want to say that SIDS is happening less often. But there are no fewer babies dying. They are just calling it 'undetermined causes.' "
Melissa Clements was astonished when in 2001 she opened the death certificate for her 5-month-old daughter, Chassidy, and read the cause was "undetermined." The Guthrie, Okla., woman asked that the case be reopened and eventually learned the vague diagnosis resulted from miscommunication between the coroner and the pathologist over whether key medical tests had been made.
"We are being misled. It is important that these numbers be reported correctly," Clements said. "It was important to me. I wanted to know that the correct cause of death is listed on the death certificate."
How an infant death is coded -- whether SIDS or "undetermined" -- can be part of the parents' grieving process.
"Sudden Infant Death Syndrome is a very, very comforting diagnosis for a parent who is grieving," said San Diego's Krous. "It is a diagnosis that states that the caregiver was not responsible, either by some act of omission or commission, for the death of a baby. It makes for much healthier grieving."
But less certain diagnoses can make parents feel they might have done something wrong.
Suzette Gripp, of Eads, Tenn., has been calling for better SIDS investigations since the 1974 death of her daughter, Sheyenne. She became so frustrated by the system she even conducted her own research survey of more than 300 SIDS parents over a seven-year period. She's still sifting through those results.
"The problem to me lies with there not being a law in place for a national standard for death investigation of infants," Gripp said. "They (medical authorities) tout the numbers going down, but those numbers are so skewed because of the reporting system that no one really knows how many babies are dying from SIDS or from other causes.
"If we just had good information, I believe we could find out what's causing all these deaths. There needs to be a federal mandate, that it's punishable by law if local and state investigators don't follow whatever protocol has been set. It needs to be made a national priority."
Saving Babies: Exposing SIDS
Being a parent of a baby lost to SIDS, I am disturbed by and have to disagree with the above statement from Dr. Krous. How could any one that has lost a baby to SIDS consider that diagnosis as "a very, very comforting diagnosis"? SIDS is a meaning of "Unknown" sudden death, same meaning but worded differently. It is not a diagnois at all, leaving the parents to always search for the correct answer of "WHY". Most people do not know that SIDS is not a diagnosis, it is only a way to say "I do not know what caused your baby to die".
I have very strong belief (confirmation is pending) that my baby died from his vaccinations, after a very thorough research of the autopsy findings. I have had discussion of my findings with the pathologist, coroner's office, State health department and the pediatrition that performed the vaccinations. It has been a strong and hard battle, but I will continue to inform parents of my findings, and to do whatever I can to help another parent save their child by letting them know the facts now, that unfortunately I didn't know then.
Saving Babies: Exposing SIDS
Being a parent of a baby lost to SIDS, I am disturbed by and have to disagree with the above statement from Dr. Krous. How could any one that has lost a baby to SIDS consider that diagnosis as "a very, very comforting diagnosis"? SIDS is a meaning of "Unknown" sudden death, same meaning but worded differently. It is not a diagnois at all, leaving the parents to always search for the correct answer of "WHY". Most people do not know that SIDS is not a diagnosis, it is only a way to say "I do not know what caused your baby to die".
I have very strong belief (confirmation is pending) that my baby died from his vaccinations, after a very thorough research of the autopsy findings. I have had discussion of my findings with the pathologist, coroner's office, State health department and the pediatrition that performed the vaccinations. It has been a strong and hard battle, but I will continue to inform parents of my findings, and to do whatever I can to help another parent save their child by letting them know the facts now, that unfortunately I didn't know then.