# Delay in my son's autopsy- what could it mean?



## ekandrmkb (Mar 1, 2011)

Hello everyone- I am sorry to have to be so specific in my title, but I'm confused as to what to do or think, and thought it best to be blunt...my son Rex died during birth a little over 10 weeks ago (full term), and we authorized an autopsy because we (and the medical staff) have no idea what could have caused it. We also did genetic testing, which won't be ready until end of May. The autopsy was supposed to take 8 weeks. When I met with my doctor at about the 7.5-8 week mark, she looked for the final results in my file, and only the preliminary stuff was there (anatomical stuff), not the pathology/bloodwork/other testing. She told me to wait 2 weeks, and if they hadn't contacted me, to call to check on the final report.

So, I called last Thursday. And Friday, and Monday. No return call. Finally called this morning, again - and the nurse called me back to tell me my dr. was checking on it, and it might even take 12 weeks instead. My dr. DID call back, to tell me the final report was done, but that the chief of medicine wanted to meet with the pathologist to discuss the results, and that my dr. wanted to talk with them before talking with me because she wanted "to make sure she knew all the details" because she's an OB, not a pediatric dr, and she wanted to fully understand everything before discussing it. Also, she thought it might be a good idea to have a meeting with her and with the pathologist or someone else who could really fully answer any questions. She gave me NO details about the report.

I know from talking to the dr. who did the delivery afterwards (not my regular dr., but a guy I like, he delivered my first), that they have had hospital-wide meetings about my case because it was so unusual; and they have ruled out dr. errors, but I'm kindof wondering what this all means. Could it just be routine to have all these meetings? Is this "normal" for an autopsy? Does this mean that they did something wrong and are trying to get together an answer for me? Or could it be something along the lines that there's something that means we can't try again? All these thoughts are raging through my head, and I have up to 2 weeks to wait now, because my dr. said that the meeting with the hospital head and the pathologist might be this week, might be next. I'm trying not to get paranoid - I like this practice, and it's at one of the best hospitals in the country - but I can't help that my thoughts keep getting more cynical. Any thoughts? Thanks in advance.


----------



## KristaDJ (May 30, 2009)

i don't have any experience with autopsies but my guess would be that it is something rare and they just want to know as much as possible before talking to you. i have seen doctors scramble together, act like i wasn't there and try to explain what was going on amongst themselves because it was something they did not know about. i would think that's all it is <3


----------



## loveandlight33 (Dec 14, 2004)

I have no idea what would make them respond that way. I can only agree with Krista and guess it is something rare and they just want to make sure they have all the answers before talking to you, that way they don't have to backtrack down the road. It sounds like you really trust them, and I hope you get some answers soon.


----------



## Carolyn R (Mar 31, 2008)

I am so sorry that you are in the excruciating place of waiting and not knowing.

I re-read your post several times, and here's my take on it. It sounds like they did find something on the autopsy, otherwise I can't imagine that they would be stalling to give you the news. I didn't necessarily get the impression that they're being evasive or purposefully making this more difficult for you. I can only assume they want to know as much about the findings as possible so they can present a clear picture for you of what happened and what this means for future pregnancies. That being said, I don't think doctors, pathologists, etc., have any idea the agony it is to have lost a child and not have answers; how a day feels like a year.

My one thought, because I know I would be absolutely frantic to know if I was in your shoes, was could you call and have an honest talk with your doctor? And say something along the lines of 'I know you don't have all your questions answered, but this was MY SON and I need to know. Can you please tell me what was found on the autopsy, and give me time to digest it and form questions before our meeting?'

I don't know how pushy you want to be, and I don't know all the legalities of your state, but as far as I know you have a right, as Rex's parents, to see the autopsy report. We had a copy sent directly to us when our daughter passed away, and I even had several conversations with the pathologist myself to clarify questions I had. If the hospital won't release a copy to you, I would ask for a phone number of the organization performing the autopsy and call them yourself. Parents have rights.

Even if you are able to get a copy of the report right away, I still would highly recommend meeting with your OB, the pathologist, etc. I consider myself to be fairly well-educated, with some experience in medical terminology, and I was still utterly lost trying to decipher the meaning. Luckily I had a wonderful midwife who searched tirelessly for answers and put us in touch with a perinatalogist for a consult.

Also, and perhaps most importantly, have someone you love and trust with you when you read the autopsy report, or when you find out the results from you OB. I was sobbing and shaking when I read our daughter's autopsy report, having completely underestimated the crushing emotional impact and flashbacks to her birth it caused. No one should have to go through that alone, or with a room of sterile, awkward medical professionals.

Love and prayers to you. I hope you get some answers soon, and I hope they can bring some peace and closure.


----------



## ekandrmkb (Mar 1, 2011)

Thanks everyone, for replying.

KristaDJ - I hope you are right in the sense that it's because it's a rare thing to lose a baby this way (they have definitely said so to me), and they want to make sure they have all the information; but it's hard, the waiting. I'm trying to be open-minded and patient.

sommer - thanks. I do trust this practice; but when I wasn't getting my calls returned right away (unlike the first few weeks after, where I'd get a doctor pretty much immediately), I started to think that maybe I was wrong. I REALLY hope not; I feel like if we find out that this was preventable, or human error somehow, I think I'll be back to square one in the grieving process, honestly. It would flatten me.

And Carolyn R - thanks for the kind thoughts, and I'm so sorry to read your signature about your full-term loss. I may take your suggestion and call back to see the status of the meetings my doctor was telling me about; just to get at least a clearer idea about how LONG I'll have to wait...and to stay in touch. As for getting a copy of the report, I think that shouldn't be a problem - I have a copy of the preliminary report already, and they've been pretty open with it. I'm sure I'm going to want to talk to someone else besides the doctors there about the results, and get their take on it. I know what you mean about having someone with me when we discuss the report - my DH will be there, but even looking at the preliminary report was kind of hard. The doctor who did the delivery offered to go through the info regarding his heart beat (his heart stopped at the very last part of labor) monitoring as a "play by play" almost of the delivery, to answer any questions; but I just couldn't relive it that way. I think the final report will have me reliving it even more than I do - which is daily in any case.


----------



## loveandlight33 (Dec 14, 2004)

My heart just hurts for you as I read this. I also hope that they are slower to answer your calls for a different reason. I am sure hearing that there was human error would be devastating. In general, I am always skeptical of what doctors are up to. Many times, it seems their main goal is to avoid lawsuit. I do also believe there are good ones out there, and I really hope hope hope that you are in with the good ones!

I agree with Carolyn, and thought the same thing myself. Maybe a call in to the doctor to let them know that waiting another 1-2 weeks is near impossible for you at this point. Is there any way that they can give you a brief outline of what to expect at these meetings? And maybe let them know that you are going to request a copy of the report yourself if they can't give you any answers at this point, because a day feels like a year and you want to move to the next stage of grieving.

I'll be thinking of you, please keep us updated. Always here to listen.


----------



## Milk8shake (Aug 6, 2009)

Sorry for the loss of Rex

I don't have any direct experience with autopsies, but I know from my work with SANDS, that it is very common for parents to be left hanging too long for results.

Here it is a lot to do with ass covering bureaucracy.

A couple of things:

* It's completely normal for the doctors in the hospital to case conference on cases such as yours. Most hospitals have morbidity and mortality conferences regularly also.

* Unless this is a *tiny* hospital, the chief of medicine getting involved would signal this as a pretty serious issue. It would raise a red flag in my eyes.

* If the final report is completed, it is utterly cruel to make you wait a further two weeks. You could definitely request a copy under freedom of information laws, but I don't think it would be a great idea to try and understand it without some help. I would think that your OB should be able to interpret a majority of it without too much trouble.

* A meeting with the hospital and your doctor is definitely a great idea, but I don't think that you should have to wait. I think the suggestion above about being prepared for the meeting is very valid.

* Can you get in touch with a local SANDS or SHARE organisation? Most of them with advocate for bereaved parents in situations such as these. Our coordinator often gets involved on parent's behalves, and it helps that she is on first name basis with many of the key hospital staff.

* Any meeting that you have with your doctor, or the hospital about this issue, I would urge you to have an independent person with you. Of course your husband will come, but if there is a trusted friend or relative that you can bring (and get them to take notes), that will be really helpful. There are two reasons for this; first, it's really difficult to comprehend bad news when it relates so closely to you. Another person will often have a clearer recollection of the information and conversation. Second, if this does come down to a legal issue, you have a witness.

I don't mean to make it sound like they have done something wrong, because it could very well just be an awful tragedy. There may be a very reasonable explanation for the delay, and the wait. But the truth is, if they have done something wrong, the don't necessarily have to tell you, and the definitely won't want to tell you.

Let us know how you go?


----------



## MegEliz (Feb 21, 2011)

I am so sorry for your loss . After reading ecveryone's comments I think suggestion i could make would just be a "copycat" response. I think that you should def call and get the results for you and your family and then go from there. I am thinking, like the others, that there has to be something more to itif tthere is to be somany meetings ? My heart is breaking for you - Please let us know ho wthings turn out


----------



## ekandrmkb (Mar 1, 2011)

Hi there - just an update to say that there has been no update. Basically, no meeting as of yet, but I'm a little less panicky about it because I found out that the pathologist and the head of OB (vs. the chief of medicine for the whole hospital) want to meet before meeting with my OB AND us in one meeting. I've heard from talking with people that if it was the head of the hospital meeting with the pathologist, there might be some concern; but since the head of OB has been involved from the start, I'm less concerned about that (although I'm not ruling out the possibility of malpractice yet). They should be meeting this week (if not the end of last week), and then will meet with us, and I've been told to call back by the end of this week to get an update. Although it's hard to wait, I'm going to hold out until at least Thursday and give a call if I hear nothing earlier. I will keep you posted.

Again, thanks so much for your replies - the support of this community really helps me, I've been dipping into a darker place during this wait, and it's helpful to have a forum to talk about it when I need to. We meet with a grief counselor every couple of weeks (and she's been great - even though she works with the hospital part time, she's been annoyed and disappointed in the wait we have to go through too), but when it's late or a strange hour, this forum has helped. Thanks.


----------



## KristaDJ (May 30, 2009)

Thanks for the update! I'm so sorry to hear that you have no answer yet but glad that you have more peace with waiting. <3 Strength to you mama <3


----------



## NullSet (Dec 19, 2004)

I have no advice, only because we did not have an autopsy done for our dd. However, I missed your initial post with your story and I wanted to say how sorry I am about your son, Rex. I just hate that this happens to anyone.


----------



## ekandrmkb (Mar 1, 2011)

Thanks again, everyone, for replying. The good news now (FINALLY) is that I have a meeting scheduled. The bad news is, it's not until the 24th. Basically, the head of OB and the pathologist (and maybe some other specialist, I think my doctor said head of pediatrics for some reason) met last week. They were supposed to contact me directly to schedule a meeting, and my doctor would like to attend, but it wasn't apparently crucial that she be there from their point of view (she wasn't driving the scheduling of the meeting, it was in the hands of the head of OB). They were REALLY SLOW to get this scheduled, but I finally got my OB involved again, and she was able to get 2 days/times options out of the head of OB and the pathologist - either this coming Tuesday (the 17th) or the 24th (a week later). My doctor is doing overnight rounds next week (all the doctors cycle through and do 1 week of being on call at the hospital for overnights), so would not be able to make it on the 17th, but left the decision up to me as to when. I chose the 24th because I realized I really wanted her to be able to come. So that delay was my choice. It'll be hard to wait, but this way everyone will be there.

One thing - I'll be getting a call from the office to tell me the exact location of the meeting, and when I do, I need to ask again WHO exactly will be there - my doctor said the head of OB, the pathologist, and the "Chief of Staff" among others? Not sure about how many people, and who, are coming. Has anyone else here had an autopsy report meeting to sit through? I'm trying to figure out what's "normal". I'm thinking that since my case seems extremely rare (rarer than full-term stillbirths, even, as this happened at the very end of labor), maybe they are all trying to get some answers and really make sure I know what happened, or what they don't know? Or is this possibly more about human error (back to that malpractice question) and they're trying to cover their bases? Not sure. Any advice?

Of course, I'll post here again when I know more details, and after my appointment. Your support has been the world.


----------



## ekandrmkb (Mar 1, 2011)

Oh - and one more thing - I'm going to try to bring one of my best friends with me, who can be another ear for us and be more objective during the meeting (based on your advice). Also, I'm going to bring a digital recorder and record the meeting. I'll let them know I'm doing it to have in case I miss anything; and when I was speaking to my sister about my plans, she mentioned that their reaction to being recorded could mean something (i.e., if they don't want me to, maybe there's something odd going on). I just think it would be a good idea, and I have some connections with medically-trained people (my aunt for one), and would love to be able to have her in the meeting, but she lives across the country so that's not possible - so a recording (and a copy of the final report) will be sent to her to review after the meeting, to get another opinion.

Just trying to get myself prepared for this - of course, I have 11 (or 10) days until the 24th, so the wait begins. At least I know there's an end to the wait now. Thanks everyone, for listening.


----------



## MegEliz (Feb 21, 2011)

Good luck with this meeting. It seems like something is up on their part to be so involved like this? Idk.. I am praying that you walk out that meeting with the TRUTH and the knowledge of what happened - good or bad


----------



## Wendlynnn (Oct 14, 2009)

thinking about you - glad you have it on the calendar.


----------



## Super~Single~Mama (Sep 23, 2008)

I'm forum crashing, and I'm so very sorry you lost your baby.

I just wanted to say about the recorder - if they ask you not to record the meeting, you can't legally. However, it is legal (in most states - double check where you are) to record conversations that you are apart of without the consent of anyone else (but you have to be part of the conversation - so where I live as long as I'm a sender or receiver of the information, and I consent to myself taping the conversation, its legal. I could not however, put a recorder in the fruit bowl and leave the house, and then have a recording of everything that went on while I was out - that would be illegal.)

I wish you strength and healing, and again, I'm so sorry for your loss. I wish I knew what else to say.


----------



## ekandrmkb (Mar 1, 2011)

Thanks again, everyone. Feeling impatient, but will post an update after next week's meeting. In the meantime, I'll be trying to keep myself busy...but thanks again for all the kind words.

One last thing - we've decided to probably not record the meeting. My DH brought up a good point - that the staff might censor what they say - consciously or not - if they see a recorder on the table. My best friend is coming with me to be a set of ears outside of the emotions my DH and I will be feeling, and she's a good note-taker.


----------



## lollie2357 (Feb 18, 2008)

I was thinking about you today and hope your meeting goes as well as possible. I am so sorry for your loss.


----------



## sahmmie (Jan 13, 2008)

Thinking of you also, and hoping you have some answers now.


----------



## ekandrmkb (Mar 1, 2011)

Hi all - thank you for your thoughts. Had the meeting (finally).

Ultimately, they don't know why this happened. I know that's not an uncommon finding, but it is so very frustrating. He seemed healthy. There were a number of relatively minor things that were not 100%, but none could definitely be the cause, and together they don't indicate some kind of underlying problem. I had an infection of some kind in the amniotic fluid, the placenta, and even the cord - but he did not have the infection. Could it have been a cord accident? Maybe, maybe not. Could it have been from the infection? Maybe, maybe not. Could it be because he had a relatively minor congenital heart defect, one that people can live full lives with? Maybe, maybe not. And so the meeting went.

One thing that came clear over the meeting - this hospital really does seem to care, they were very open and kind and frank during the meeting - and apologized, profusely, for the delay in scheduling the meeting and the lack of clear communication. Because of this, and the facts I heard, I truly don't believe malpractice is a concern anymore. I am starting to grapple with the idea that this was just horrid, horrid bad luck. However, I am forwarding the report to my aunt, who is a doctor and has many contacts with specialists who can give a second (or third, or fourth) opinion. She already looked at the autopsy report, and her thought is that we're unfortunately in that 10% or so who go through "intrapartum loss" who never get a clear answer.

We are still waiting on genetic testing results, but frankly I'm hoping that comes up negative as what we tested for, if positive, could be something that my older son might have, and I REALLY don't want that to be the case.

They also said that they see no reason why we can't try again. I am taking that with a grain of salt, though - as I feel like if they can't tell me what went wrong, how can they tell me it's okay to try again? It doesn't mean we won't try, but it demands some thought. We're still waiting on the final genetic results for this anyway.

So, thank you again for all your comments and thoughts. I will try to somehow find some way to deal with the fact that we may never know.


----------



## sahmmie (Jan 13, 2008)

Thanks for letting us know. I'm sorry that you don't have any clear cut answers, but I'm relieved for you that you don't have to deal with it possibly being malpractice. That would have been worse than not knowing. I'm so sorry you lost your son and sorry that you may never know why. Take good care of yourself.


----------



## KristaDJ (May 30, 2009)

I'm so sorry that you still don't know. ((((((((((HUGS)))))))))


----------



## ekandrmkb (Mar 1, 2011)

Thanks. I'm just starting to grapple with the idea that I'll never know. Not sure how to handle that, but just as I start going in that direction, the drama continues...my aunt received a copy of the autopsy and shared it with a colleague, a cardiologist (which makes sense because this seems to have been a heart issue, although even that is not 100% clear). The cardiologist is asking all sorts of questions, and telling my aunt, "there's something wrong with this story". He's asking for a copy of the tracings (the fetal heart monitor readings) to get a better look at things, because HE now thinks there might have been some doctor error. I don't know WHAT to think at this point. This is such a crazy roller coaster. I'm completely drained at this point. I've asked my DH to step in and take over future contacts w/the doctors at the hospital for a while (he's totally willing to do it), because I'm needing to take a step back to keep me a little more sane.

Also, next week we get genetic testing results. Hopefully that will show nothing - I'd really rather have no answer on that score than a positive test that would mean we have to test our 3 year old for a potentially dangerous heart condition. So, that adds stress, for sure. Fingers crossed that it will come soon.

Thanks again for listening. The support on this board is such a great help.


----------



## Wendlynnn (Oct 14, 2009)

Ugh. I'm so sorry for your unsatisfying results. It sounds so frustrating and exhausting.


----------



## sahmmie (Jan 13, 2008)

Please let us know about the genetic tests. I pray it's normal so you don't have to worry about your 3 year old.

How are you dealing with the Cardiologists suspicions? I can't imagine your pain, and I'm so sorry.


----------



## ekandrmkb (Mar 1, 2011)

Well, I have an update...finally. My DH and my genetic tests came back, and both of us were negative for Long QT, which IS a relief, although still gives us no answers. All this tells us is that the chances of our 2nd one having the condition is incredibly rare, virtually impossible; and (although I almost hate to say it, more importantly) this means that my 3 year old won't have to be tested, because the chances of HIM having this are also virtually impossible. I have many, many thanks for that.

We're still waiting on getting the "tracings" from the fetal monitor during my labor...my aunt's cardiologist colleague still would like to see them. I found out today from my OB that I need to contact the guy from legal (!) for "the fastest way to get them" (she has told me that they are absolutely MY records and I can get them, they're not reluctant to give them to me). I can logically understand why this guy is involved, and he seems nice; but I just want the records without the knowledge that i have to go through their legal department because they are so afraid of a lawsuit.

Of course, my attitude could change, but at this point I'm thinking that at worst, the cardiologist my aunt knows will have the opinion that there was a "bad call" during labor...but not technically "malpractice". Meaning, they doctors followed all the proper procedures during the labor, and did not honestly know that this could happen. Meaning, it could just come down to a difference in opinion. Do I want to keep investigating? Yes and no. I need to find a way to grieve vs. trying to find answers...if there are no answers, I feel that I need to figure out how to deal with that emotionally. I also feel like if I stop investigating, it's not fair to Rex, who died for some reason we don't know yet.

Anyway, another long message - thanks so much to everyone for the ear. I will update whenever the cardiologist gives my aunt (and me) their opinion...


----------



## KristaDJ (May 30, 2009)

Thanks for the update and SO glad that you don't have to worry about it with your living son.


----------



## Dalene (Apr 14, 2008)

Hi, I just wanted to say that I am so sorry about the death of your son. I haven't been on these boards in a long time, but wanted to tell you that it happened to me, too. My first son died in labor at 40 weeks and 6 days. I had just begun to push when they couldn't detect his heartbeat. I have a crash C/S and woke up to find my husband holding our baby, who had died. They tried to resuscitate, but it was too late. I am so, so sorry. We did all the follow-up that it sounds like you are doing, and nothing was conclusive. It may have been an occult cord prolapse that couldn't be detected. We'll never know. It sucks and has taken me a long time to process through the reasons and the guilt.


----------

