Sudden Infant Death Syndrome (SIDS) Support Group
Sudden infant death syndrome (SIDS) is any sudden and unexplained death of an apparently healthy infant aged one month to one year. SIDS is responsible for roughly 50 deaths per 100,000 births in the US.
MY name is Amy. My husband is John and our oldest child is Linsey Grace, 4 1/2 years old, our youngest is John Collin, June 21,2011-July 30,2011. It will be 13 weeks on saturday. I still have not recieved an autopsy but was "reassured it was SIDS" Im not sure if I want to know the results. I am a Christian. I was raised in church since I was born, but not always served God, up until now. Collin's death has propelled me foward in my relationship with God. My God is still GOOD still worthy even in the midsts of my storm. Collin was very much wanted and loved. I waited what felt like forever for him. We started talking about Collin about 4 years before his birth. I miss him more than words could ever express or do justice to the way I feel. God has Blessed me beyond measure in all of this. I am so lucky to have got a chance to meet him. He smiled at me for the first time the day before he died, about 8 times to be percise. He died in mine and my husbands bed. with Linsey (our oldest) slept in the bed from the time she came home. Collin I put him in his pack n play beside the bed but he just slept better if I held him all night. Nothing out of the ordinary about the night AT ALL I fed him and changed him and we went to sleep. I often would lay him in between us. He was on his back when my husband got up for work and turned the light on. I will never forget those words "Oh my God Amy why is he so cold" I screamed "CAll 911, Call 911" Thank God I had been in nursing classes for the last year, it took about 45 sec. for me to realize to start CPR. That morning doesnt take my breath away as much when it plays in my head, I have managed to work my way back to the night before, out last moments together. I believe Collin had not been gone for very long. He was pale and limp when I picked him up.Per my experience in nursing, although I do not know a cause of death or ETD for Collin. HOW MANY OF YOU when you performed CPR did blood come out of the nose and or mouth area? My life has been forever changed. MY son is not DEAD everything that made Collin my son is in Heaven,I know he is sitting at the feet of my Lord...worshiping praying and waiting for me. I know when I die I will see him again. My realtionship with God has grown beyond belief. I know Collin had a purpose and he fufilled his purpose and his life has/will have a profound effect on the world. THere has beeen a healing and peace that God has given me on a daily basis. God is just AMAZING in everything he does. I know in NO WAY did GOD do this. Im sure I will write more about my life and my Collin. But another point that is bugging me is the fact people ask me "Are yall gonna have another baby" Man people really dont know what is like. In no WAY will another baby make this any different, another baby will not be Collin!!!! I dont want another baby I WANT COLLIN BACK! What is yalls experience with people asking DUMB questions? But just wanted to talk/hear to other parents. Please give advise, comfort, what ever. Please Respond! Love you guys, God Bless yall for being so strong.
LGM is right, though. You'll never get over it. Personally, I wouldn't want to. Hurting less is nice but I don't want to imagine a time when I don't think of my son and hurt a little. What I have learned is that a lot of times people say things to you to make them feel better. Take the support when offered, ignore the rest, and do the best you can. That's about all any of us can do.
And as for people saying ~stupid~ things.....sometimes other people just don't know what to say, but feel obligated to say something....so it comes out wrong! I know for myself, before having a baby die, I never knew what the right thing to say was either....& probably said wrong things too!
Now....I know that all that will comfort to a Parent that has lost their child is to assure them that I will Pray for them....END! That's all that needs to be said! Prayer is worth more than 100 wrong things to say!!
Hang in there....I will Pray for you!!
I do not know if they did CPR on my nephew, Henry at all. He was in daycare the day of his death. He died taking a nap. It took until, I think, about 4 months before the Medical Examiner finally gave my brother the autopsy report. They do not use the exact term SIDS because SIDS is actually a media type name given to this condition. The report came back that the child did die of no known cause. I dont know the exact wording they used but it was an unknown natural cause so Henry died of not breathing during his nap aka SIDS or "crib death".
There is a book I think you should read that I found. It is called "SIDS & infant death survival guide". It was written way back in 1993 or 1994. However it apparently was one of the first grief books in the subject area of SIDS. The book is a collection of REAL LIFE TRUE Sids stories. None of the readings in it describe blood coming out of the nose or mouth...that I remember. However I have seen some people posting that question online in my google searches for SIDS information. So maybe there is something to that.
There was one story in the book about a daycare provider who did perform CPR AND got a pulse back! And the baby remained in the hospital on a respirator and being monitored. The doctor told the parents that the baby "should have come back by now" but was "brain dead". The doctor explained to the parents, in the book, that normal babies would come back with a pulse but "not SIDS babies". So that information gave me a little comfort knowing that if CPR had been given, Henry probably wouldn't have recovered anyway. It bothered me to think that if Henry had been near family (they live in another state) that maybe one of us, like myself, could have given him CPR to save him. But now I know CPR might be pointless in a true SIDS baby.
My mother had many rude comments from coworkers after she told people about the death of her grandson Henry. My brother and SIL are having another baby due next year but we all worry now if this is going to happen all over again. It seems that most people don't know what to say and sometimes say rude or inappropriate comments to those grieving. Sadly those people asking you if you are going to have more children make it sound like it would be like replacing a kitten and not a human being. Although just keep in mind those people probably did not know what they should say and maybe though it would be a positive conversation to think you might have more children in the future. I hope you and your family can heal from this and get counseling if you need it.
I performed CPR on my son until the paramedics arrived. Once we got to the hospital, blood and fluids seeped through his mouth and nose. I stayed in the ER room with him, alone, for a couple of hours, and I just kept wiping it away. As soon as the coroner came in and asked me some questions he told me straightaway that it would be labeled SIDS on the death certificate but that he had to wait 24 hours to do a preliminary investigation to rule out accidental suffocation. He called the next morning and said that suffocation had been ruled out. I live in a very small town and two weeks later another baby died from SIDS as well. There are only 5,000 people in my town so it was a shock that two happened so close together.
Here's what the coroner told us...
The area around my son's mouth and nose were different colors. I can't remember what color it's supposed to be after death but apparanrely if oxygen had been cut off it would have been a color different from what it was. In addition, he did not have any star bursts in his eyes, another indication of suffocation. I have a little bit of a medical background so even though I was in shock I checked for the star bursts myself because, honestly, suffocation was the first thing I thought when I found him. As I was doing CPR I checked his eyes and when I didn't see the star bursts I thought of SIDS. The coroner told me about the discoloration and verified the star bursts thing.
I found Toby on his back, on top of the covers. My fear was that my husband, who is a very deep sleeper and has narcolepsy, had somehow pressed his body against Toby. This might have happened anyway, but it wasn't the COD.
No worries about the therapy thing. I didn't want to take any medication, either, and I don't know. I needed it for awhile though because I started cutting myself. Counseling didn't work for me because for years I was a family therapist. I knew what questions they were going to ask and how they were going to ask them so I ended up deflecting things and playing therapist TO my therapist. It wasn't helpful. :-P Honestly, time has been my greatest friend. I lost most of my friends and my family doesn't live very close to us so my husband and I have relied on each other a lot. We don't get out much so we just spend time with our oldest son and our newborn and try to take care of each other. I keep a blog at www.lifeaftersids.blogspot.com and there are a lot of other men and women that keep SIDS blogs as well. It has helped me to write about how I'm feeling and to read other people's blogs. It makes me feel less alone.