We want to hear from you
There's a lot of content to this Web site, including the records of more than 20,000 infants who died suddenly from Jan. 1, 2000 through Dec. 31, 2004. We want people to investigate the medical chaos that surrounds the methods used to diagnose sudden infant death.
But one of the most important parts of this project are these forums. We want to hear from you. We especially want your views on how you were treated and how you think you state and community is doing in improving efforts to investigate and eradicate infant death.
It might seem like a hassle to log in. We do this so that mostly sincere people will participate in this project. If you don't want to post your comments publicly, then please contact us privately.
Back to Sleep
My son Christopher died from SIDS in January 2007. It devastated my whole family. Before my son passed away, and before I knew more about SIDS than I do now... I thought that if I put my son to sleep on his back, and do all the stuff they said reduces SIDS that it would NEVER happen to my baby. "Back to Sleep" is so misleading. Yes it is a risk "reducer", but what people have to realize is that it is not a prevention. Now I am a part of many groups... online, and off. I am just trying to get through life the best I can right now.
Uneducated Pediatricians
When my daughter died in 2002, we were treated pretty well by the hospital staff, the sheriff's deputy, the coroner, the funeral home, and the cemetery staff. Believe me, we never dreamed we'd be calling the coroner on the phone to ask him questions about our daughter's autopsy. That was truly surreal. I was, and still am, extremely disappointed in and mad at my daughter's pediatrician. He never called to offer condolences or to see if we had any questions about SIDS. The worst feeling came about fifteen months after her death. I called the pediatrician's office to have her medical records transferred to my subsequent daughter's doctor. The lady that answered the phone asked, "How is Katie? We haven't seen her in awhile." After picking my jaw up off the floor, I replied, "That's because she's dead." She stuttered and stammered for a minute then saw that her records had been marked. Then I read a SIDS article in my local paper in 2005, in which the same pediatrician was quoted as saying that SIDS is probably suffocation. That's when I knew that he should not be a doctor treating babies because he obviously wasn't paying attention in school. UGH!!! What's a SIDS mom to do??? Thank goodness for my family, friends, and on-line support groups. They all let me vent about this doctor and were able to calm me down. He still makes my skin crawl. Hopefully, I'll be able to let this grudge go someday. Thanks for listening!
treatment
My grandson died in Oklahoma in 2006 while he was visiting relatives with his mother, my daughter-in-law. She said she was treated well by the coroner who classified the death as a SIDS death. However, she was devastated by the remark of one of the paramedics. He told her "Well we could have saved him if you had found him earlier."
How to help a grieving parent
The main thing I remember about when my son died is being treated like a criminal. When we were in the ER saying good-bye we were instructed to go back to our house when we left and there was already a police officer posted outside of our front door so that nobody went inside to move things around. Then when we got home only myself and my mom were permitted inside the house while they questioned us for nearly 2 hours in the rain. When my uncle picked up coffee from my mom it was given to her through the police. They then made me use a cabbage patch kid doll to show them the position that I laid him in when I put him to bed the night before and how he was laying when I found him that morning, while they took pictures. Then they confiscated his bottle from the night before, and they took his clothing and I believe blankets. I never saw the pajamas again because the funeral home decided they should be buried with him. The day after John died the detective in charge of the case was much nicer to me after he went and watched the autopsy. There needs to be mandatory sensitivity training at the least, and grieving parents should not automatically be treated as suspects. I understand that there are some people that do deplorable things to babies, but they should keep that to themselves and try to show some compassion to the family.
For the most part the funeral home did a great job, though my grandfather did work for them for years, so they knew my family. The only thing I would suggest to the funeral home and/or hospital is to put together a memory box for the family that at least has a hair clipping, a lot of SIDS babies including my son never had their first haircut, a picture, and hand and foot prints. As I mentioned above I also would have liked to have the outfit he was wearing back, but it is buried with him. I do have pictures, but only because I specifically requested them and they are not very good quality.
I have communicated with many SIDS parents and most of them had very open lines of communication with their ME, but mine was not open with me at all, and the only reason I was able to see the autopsy report at all is because of my contact at the SIDS center of NJ. I still have no idea if metabolic testing or anything like that were performed.
That's all I have to say for now. Thanks for listening!
Cathy McDonald
Changes
I was very fortunate when my son died in that I did not have to endure a police investigation such as other have had to. However I have heard some extremely difficult to read stories of parents who were held in suspicion. I believe that this comes from the 'sensationlism' of infants who have been murdered, as well, the Coroners slant too. I live in Canada and in conversation with our local Coroner several years ago about this his response was 'we are taught to think dirty first'. I think that there needs to be more information out in the public about SIDS ~ in fact I would like to a saturation of every Drs. office, medical facility, newspapers, magazines, bill boards. I believe it won't be until most people know about SIDS and the devastation it can cause in families that they will be more willing to give those donation dollars that we need so desperately to find the causes of SIDS. While I realize that there is on going research in a number of areas such as metabolic testing, long qt's, brain stem, we need a push to increase the dollars that are going into research and we need a HUGE public awareness campaign to get those dollars.
what can be done
My family and I were fortunate that we were NOT treated like criminals, but I do feel the funeral home could have made some suggestions before my son was cremated that at the time I was not thinking clearly on, such as keeping a lock of Joey's hair, fingernail clippings and so on.
However, I do have suggestions particularly for the medical community.
Many links have been made to SIDS and when children are tested some can even be saved BEFORE any tragedy occurs. The PKU test all babies have in the hospitals have now been extended to 55....ALL BABIES IN ALL STATES should be tested for ALL 55.
This is another inconsistency in these UNITED states of America....we are not united at all and the possibility of a baby in one state dying from a metabolic problem that could have saved in the neighboring state is ridiculous!!! At least five metabolic disorders (Particularly MCADD) is directly linked to SIDS deaths.
Of course, by the time I knew this information my son was already dead but his tissues were tested and he still came up clean.
The underdeveloped brainstem is another link that has been made. Unfortunately, as far as I know, testing for this cannot be done on a live subject but I am not sure. Dr. Hannah Kinney has been researching this for over 20 years. Why is research so slow?? Why is there not more Awareness with SIDS so more dollars can go to research???
LONG/Short QT is also linked to SIDS.
Overuse of Flame Retardant chemicals particularly in the United States are also linked to vulnerable infants.
These include phosphorus, stibine and antimony.
Smoke inhalation is what kills most in fires, not burning. A babies mattress does not need to allow a cigarette to burn for 10 minutes without flames. The chemicals are dangerous.
SIDS has so many different causes, and all need to be exposed to the mainstream public. We need awareness campaigns on the level of Breast Cancer.
SIDS organizations such as CJ's, and First Candle need to make awareness the number one target for the money.
WHY HAVE I NEVER SEEN A Public Service Announcement for SIDS? It has been going on for years and years and affected millions of families at this point and yet no PSA?
Our Children are our most valuabe resource and yet we choose to kick around the most innocent. Our babies have no voice, so only the parents and families must get involved and not "ACCEPT" it or "go on with their lives"....we must continue to ask WHY and not stop until answers are found.
THE SILENCE OF SIDS MUST END.
In memory of Joseph Christian McGraw
http://www.geocities.com/joeysmom5
Marta McGraw
UNEDUCATED PARENTS
I AT THE TIME OF MY DAUGHTERS DEATH WAS AN LPN AND I DONT RECALL EVER BEING EDUCATED ON SIDS. OF COURSE MY TIME WAS SPENT IN GERIATRICS BUT I STILL DONT RECALL EVER COVERING IT IN SCHOOL OR CLINICALS. NO ONE CAN EVER PREPARE FOR HOW THEY THINK THEY WILL RESPOND TO THIS TRAGEDY. WHEN IT TRULY HAPPENS I FELT ANGRY NOT JUST AT GOD BUT AT DRS, EMTS, L&D DRS, AND MYSELF. I FELT THAT SOMEONE SHOULD HAVE KNOWN THIS WAS GOING TO HAPPEN AND I SHOULD HAVE KNOWN WHAT TO DO. SIDS IS STILL NOT BEING MENTIONED NOT ONLY IS OUR CHILDREN STOLEN BUT OUR ABILITY TO HAVE A SIMPLE ANSWER FOR CLOSURE. I THINK ALL WILL STILL DEAL WITH THIS UNTIL AN ANSWER IS FOUND AND IT HAS BEEN LIFE ALTERING FOR MYSELF AS I STILL DEAL WITH IT AND HAVE UNANSWERED QUESTIONS. STATES AHOULD PROMOTE THIS MORE SO THAT THE FUNDS CAN BE THERE TO GIVE AN ANSWER FOR THOSE SEEKING AND TO PREVENT MORE UNANSWERED MOURNERS.