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.

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Children's Physical Health
/ Sudden Infant Death Syndrome (SIDS) Support Group

Meeting with the Pediatrician

brandylee82
brandylee82
Okay, so Nick and I have met with the daycare provider, the detective, and I spoke with the Medical Exmainer over the phone for over a hour about the autopsy results. Our next step is to meet with our pediatrician.

I want to meet with him for a couple of reasons. One, Austin's autopsy mentioned that he had a very mild case of hydrochephalus. The medical examiner said it wasn't serious and that worse case senario, he might have had a problem with seisures down the road, but more than likely not. She said it was in no way related to his death. I want to mention this to the pediatrician, just to get his opinion.

Two, I want to talk to him about having another baby. What are his recommendations? Any genetic testing beyond the routine tests that we did with Austin? What is his take on SIDS being genetic? I have read a ton of stuff on this and the info is so conflicting, but I'm just curious what his opinions are. I am also considering switching OBGYN. I want to know what he thinks of my OBGYN. I know it seems strange, usually we ask our OBGYN for a pediatrican recommendation. And I'm not really sure how to say this, but when and if I get preggo again - I want to make sure the OBGYN's #1 concern is for my baby's health.

I guess my question is, for those of you who met with your pediatrian, what else did you ask? Was it helpful meeting with them? Any advice for me?
deleted_user
deleted_user
I KICKED MY PEDIATRICIAN TO THE CURB AFTER I SPOKE WITH HER ON THE PHONE AFTER mAKAYLA DIED..I ASKED HER WHY I WAS GIVEN A PHAMPLET ON SHAKEN BABY BUT NOT HOW TO REDUCE THE CHANCES OF SIDS...SHE SAID WE DONT LIKE TO WORRY OUR MOM AND DADS ANYMORE THAT THEY ARE ARLREADY WORRIED WITH A NEW BABY...HELLO...I HAVE A 15 YEAR OLD SHE WAS A BELLY BABY..MY 11 YEAR OLD WAS ON THE SIDE.MY 5 YEAR OLD ON THE BACK SO MANY THINGS CHANGE..WHY WAS I NOT INFORMED FROM THEM..THAT PISSED ME OFF..JUST LIKE THE MOMS WHO BREAST FEED THE DOCTORS NEVER SAY TO THE MOMS NOW DONT FEED IN BED IN THE MIDDLE OF THE NIGHT..BEACUSE YOU COULD FALL ASLEEP AND SO COULD BABY AND THEN BABY CAN SUFFOCATE..WE AS PARENTS DONT ALWAYS THINK OF THESE HORRIBLE THINGS...WHAT I READ AFTER MAKAYLA DIED..DONT OVER HEAT THEM DONT LET THEM SLEEP IN CAR SEATS..PUSH THE PACIFIER..WITH ALL THIS RESEARCH TRYING TO LINK THIS TO THE SERITOIN IN THE BRAIN OR LACK OF..THAT IF THEY GET TO NESTLED THEY CAN FALL INTO SUCH A DEEP REM THAT THEIR BRAIN FORGETS TO TELL IT SELF WHAT TO DO..I AM SORRY I AM SO OFF COURSE JUST REALLY MAD..THAT MY DOCTOR WAS NOT INTO INFORMING HER MOMMIES AND DADDYS..BEACUSE IT IS NOT PROVEN YET..THEY WOULD RATHER HIDE AND PRETEND IT DOES NOT EXIST..
deleted_user
deleted_user
I met with my ped...I was angry b/c I was reading things about her heart condition and Audrey seemd to exhibit some of these...but she was very good at pointing out to me that it CAN show or it can be idiopathic mkenaing that it just shows up and causess instant death . they talked about genetic testing and such for my hubby and I...still haven't done it b/c it seems to freak my hubby out...but we will. It made me feel better but I still think that i would have to find a new doctor if I would ever be blessed with children again. Too much resentment still. I just keep thinking that Audrey was scheudled to have ear tubes the day after she passed...and maybe these earaches were NOT just ear aches and I was NOT just a paranoid first time mom. I have an ob/gyn appt today and can't focus on anything else AT ALL...I am so nervous, afraid, and just sad.
deleted_user
deleted_user
When I went and talked to me ped. I took a copy of the autopsy with me so he could explain all of the lingo to me. Other than that, he told me it wasn'y my fault.....which I still don't believe, how rare SIDS is.but not really believing that seeing all these new moms, and then he told me it will always hurt....WELL DUH! I know he meant well, but that trip really didn't help anything. I hope you can have a better experience than we have.
Fantonme
Fantonme
My pedi was my rock. He did everything for me and was blunt and honest with me which I appreciated. I had a lot of the same questions as you. He didn't recommend me to have any other genetic testing cause I have 2 other children. But we are going to do a echo when Sophie is born. 2 out of 3 of my children have had murmurs and he wants to make sure everything is okay with the heart before she goes home. Other then that he told me he will do whatever I want. I think it is just getting by the fear and having faith that everything is going to be ok. About the only thing we have control over. I hope your pediatrician can put your mind at ease and explain some things for you.
deleted_user
deleted_user
My ped was ready to prescribe any bell, whistle and siren I wanted for Marissa. We had an EKG done before she went home after birth. About a week before Marissa was born, she called me about 2-3 times sharing things she read. Because Nick's cause of death was not listed as SIDS, it opened the door with the insurance company making it easier for her to order any test I wanted, strange huh?
brandylee82
brandylee82
Thanks so much everyone! Sometimes I feel like, because Austin was my first child, that maybe it was something genetically wrong with him... it may sound strange, but since I don't have any surviving children, I feel like I don't have proof that this is possible for us.

Since Austin died, my thought would be that the doctors would be extra cautious/concerned with another pregnancy/baby that Nick and I may have. I guess it doesn't work that way though... I guess they only care if they feel like there was a diagnosis that they can understand, and SIDS is not something that anyone can understand.
deleted_user
deleted_user
I went to Kendal's pediatrician about a month after Kendal died because Tyler had to go to the doctor... Instead of talking about Tyler's illness (which I now think was H1N1)... I just balled, she went on to say that Kendal was extremely healthy and it was nothing that I or the daycare provider did wrong- She called me last week and left a message to let me know that she was retiring and we needed to find someone else!!!