# please, i need some help and advise...



## coralsmom (Apr 1, 2005)

yesterday, i picked up my medical files that dealt with my pregnancy with coral, my daughter, who was stillborn on march 21st, at 41.5 weeks, 'causes unknown'. i thought that if i had my files at my fingertips, i could reassure myself everytime my mind wandered to why she died, i.e. 'i wonder if it was because i changed the cat litter that one time...' or 'maybe they saw somethiing in the u/s that they took when they found no heartbeat...'.

because we opted not to have an autopsy, we have to accept that we will never know why she died, having exhausted all of the non-autopsy tests we could do (i was tested for the blood clotting disorders, retested for toxoplasmosis, and we had blood taken from coral's umbilical cord tested for genetic problems- all of these tests came back negative). but my mind is constantly wondering even though i will never find out, so i figured to alleviate some of my repeat fears of causes, i would get my records.

well, after reading them, i am upset. two reasons- one, in the report dealing with the tests done on her placenta, it said there was 'acute chorioamnionitis' -i may be spelling that last word wrong-, but after i googled it, i think it means evidence of an infection. we were told that there was no evidence of infection, and that her placenta looked like they would expect a 41.5 week old placenta to look like- 'mild calcification' is all she told us about that report.
the second has to do with notes from my initial visits to my midwife after i found out i was pregnant. i was not planning the pregnancy, and it was a bit of a shock, i was on bcpills and my dp and i weren't ever planning on having children- i mean, that all radically changed once we got our minds wrapped around the fact that we were going to have a baby!- anyway, i had experienced some bleeding at probably 4-5weeks, before i knew i was pregnant, and then again at 7-8 weeks, i actually thought i had miscarried, but i knew nothing about it and i wasn't really worried- i took a hcg test the next day and it still had two lines- i mean, i was really naive about pregnancy and miscarriage- i just trusted what my midwife was telling me- she told me not to worry about the bleeding, sometimes the body just sheds out old blood. well, in the notes she wrote '*?* viability of pregnancy' after that meeting. this is upsetting to me because, in retrospect, i wonder why she didn't mention this to me. if bleeding happened in a pregnancy that i may have in the future, i would be really worried, and want to know all the facts about what could be happening! i mean, my midwife questioned the viability of my pregnancy, but told me not to worry. does this seem wierd? or reasonable? maybe because so many early pregnancies end in m/c, she doesn't want to rock the boat if the woman herself isn't expressing worry, and i wasn't really. i would have been if she told me though. so maybe that's why she wrote it and told me otherwise- to wait and see what happened. now i wonder if that early bleeding had anything to do with the reason why coral died at the onset of my labor.

also, there was nothing in the chart dealing with a physical examination of coral, and i guess i thought there would be, because i know they examined her. i have a lot of questions about the info in these records, and i guess i should just ask my midwife. i am worried she will become defensive, and i don't want to damage our relationship. maybe someone here knows about...
1. acute chorioamnionitis, and 2. the u/s report said the tech 'could observe the skull bones overlapping, which is a sign of fetal death' what does this mean? and why does that happen? i noticed the bones on coral's skull were not aligned, and i assumed it was due to the vaginal delivery, they never 'sprung back' from the birth. i guess there is so much i don't know, beyond what we will never know









can anyone comment on any of the things i've brought up? i mean, maybe it wasn't wise for me to read the cold, medical version of what i thought was a warm, friendly, trusting relationship with our midwife during a really healthy, problem free pregnancy. when i read the reports- they are so clinical- none of the dr.s, tech's, or even my midwife sounds like they even care that my baby died. i should have expected such metallic, blank sentiment, or lack thereof, in a medical report. does it sound like my midwife 'kept' something from me regarding the early bleeding? or was she erring on the side of cautious caring?

and, have any of you read your reports? did you find it helpful? or was it a bad experience, all of the reading into things, speculation, ever-searching for something that will never be found...

also, can anyone suggest ways in which i can approach my midwife so as not to end up putting her on the defensive?
thanks for listening. love, coralsmom


----------



## dziejen (May 23, 2004)

I read it and my thoughts are with you. I don't know much about the medical aspect though and don't have much to offer in that respect. Could you sit down and have a chat with your midwife -- possibly ask if you could share what is in your record and get her perspective on it? I think that a good midwife would handle it professionally and surely she can understand that you are just looking for some insight. I hope that you are able to find some peace with this.


----------



## a-sorta-fairytale (Mar 29, 2005)

I am so sorry mama. I only have advicse on one part. In the midwife notes where she put "? viablillity" i wonder if she meant that YOU were ?ing the viability?

I knew when i started spotting i was losing the baby but my mw too was very reassuring and siad how common it was. But i just had a feeling that it was all over when i saw the first spot of blood.
Margarita


----------



## Ben's Mommy (Aug 11, 2005)

Sweetie, I'm so sorry you had to read the cold files of the medical world. I too have read my Benjamin's files. The causes were known though, so I can't even imagine what it would be like to read the files looking for answers. I would try and sit down with your mw, and rationally discuss all the questions you have come up with. If you explain to her your questions and concerns I'm sure she'd be more than happy to help put your mind at ease.







Please be easy on yourself.


----------



## Twilight (Jun 9, 2005)

First of all





















for what you have been through... reading the files had to hurt so much.

If it were me I would definitely ask about the acute chorioamnionitis (however that is spelled)... something there does not add up. Your midwife would be a good place to start.

I'd ask about the question of viability too, but here is what I think that part of it meant... I had first-trimester bleeding with my last pregnancy and when I did some reading on it, some articles mention that when you have bleeding there is a 50% chance at that point you will have a first-trimester miscarriage. So... she was right to tell you not to worry (there was also a 50% chance that it was only old blood, and worrying wouldn't change the outcome anyway), but also right to question the viability on your chart. I think, though, that the bleeding that occurred then really only raised the risk of a first-trimester miscarriage and probably didn't affect what happened later... I would still ask, but I think she was being straight with you.

I don't know what to think about the skull bones overlapping... that would be helpful to ask about too...

I can't imagine how difficult this is. I hope you are able to find some closure through all of this for your sweet baby.


----------



## iris0110 (Aug 26, 2003)

I am afraid I don't have many answers, but I do know a few things about Chorioamnionitis. That is what caused the death of my daughter Arawyn. It is basically the name given to an infection caused by any of a number of micro organisms that live in your vagina naturally. They are not harmful to you normally, but during a pregnancy they can slip through microscopic tears in your amniotic sac causing infection of the chorion lining, placenta, umbilical cord, uterus and even baby. It is one of the leading causes of premature delivery. Symptoms in the mother include a fever as low as 100.1, tachycardia, backache, stomachache, cramping and other flu like symptoms. No one ever told me any of these things, so when I developed symptoms I simply assumed I had the flu. I didn't have any clue what was up until it was too late. It is possible to have it without having symptoms though. Were you treated with antibiotics in the hospital? It seems strange that they would have told you there were no signs of infection, and then listed it in the medical record. Is this the first time you have gone over the pathology reports on the placenta? At my 6 week appt my midwife went over the pathology report with me, and it listed Acute Amnionitis as the cause of death, which simply confirmed what we already knew from the massive infection I had experienced in the hospital. Is it possible that they didn't see any signs of infection in you, but later found the infection in the placenta and that is why they originally said no to the infection but changed it? Can you speak with a midwife/Dr familiar with your situation about this? If they found chorioamnionitis in the placenta, and it was advanced, it is a very good possibility that it is what caused Coral's death. The placenta may have looked completely normal to the eye (mine looked just like it was supposed to for a 22 week placenta) but during further testing they found the infection. It is not something that you can just see by looking at it.

I hope some of that helped.


----------



## coralsmom (Apr 1, 2005)

thank you shannon...
wow. that is really disturbing to me. i don't know why, what, or when certain info was given to me- i mean, it does seem wierd to have that as a diagnosis but not to have had it mentioned to me. i did call my midwife and have an appt with her in a week to talk about the charts, particularly this issue. is there a treatment for the infections if they do slip thru the amniotic sac? or is it just one of those terrible tragic things you can do nothing about? i don't recall any of those symptoms during the pregnancy. am i at risk of having it occur again? this really sucks. you know, i went and had a meeting with the head of the larger hospital's maternal fetal medicine dept, and he read the same charts i have before i saw him. he didn't mention it either. i guess i'll just have to wait to meet with her, or go back to the mfm dept and ask again... its a new doctor, so maybe i'd get different answers. i'll keep it posted. thanks again, to everyone who posted, i really appreciate what you all wrote. love, coralsmom


----------



## iris0110 (Aug 26, 2003)

I am glad that at least some of that could be helpful. As far as treating the infections, if caught early enough they will often try antibiotics to treat. It also depends on where you are in your pregnancy. Say if you were 36 weeks they would probably just set you up with antibiotics and induce in the hope that your baby would be born. If you are really early then the treatment is usually attempting to stop the spread of the infection and give the baby more time. Sometimes it works and some times it doesn't. Alot of women don't find out they have the infection until they go into premature labor (chorioamnionitis is one of the three leading causes of premature labor in America each year) at which point not much can be done except treating mom and baby after delivery. The good news is that it is extremely rare. My midwife said the chances of it happening to the same person twice are alot like the chances of getting struck by lightening twice, it can happen, but doesn't often. You are no more likely to get it because you have had it before. You aren't exactly less likely to get it either, but because it is sooooo rare it would be rare for it to happen to the same person twice. Now if you were GBS + that might be a different story, but that is a slightly different situation. I hope that helps. Hopefully your midwife will have some more info for you.


----------



## Boxerlove1 (Oct 11, 2005)

Just a quick note here. When I was about 24 weeks, I noticed some fluid leaking, but being new to this whole pregnancy thing, I thought it was urine from the baby exerting pressure on my bladder. All the women in my due date club were experiencing the same thing, so I did not worry about it. Then, my water broke on 10/22, 3 months before my darling baby was due. The doctors said (after the delivery) that his white cell count was elevated, but mine was normal. This indicated that an infection was present. Any time there is a hole in the amniotic membranes, or anything compromising the integrity of the membranes, infection is highly likely. Theywere going to just give me IV antibiotics and keep me in the hospital until the due date, but then they discovered his foot protruding, so he had to come out. Because of the infection, it had caused some vessels in his brain to bleed. Had he lived, he would have been severly brain damaged, and would never have breathed on his own or been able to eat normally...

My point is this - There was nothing I did to cause this, and nothing I could have done to prevent this. Any time there is disruption of the membranes, infection is likely. Bacteria that naturally live on our skin and mucous membranes are what are calle "opportunistic pathogens," meaning they exist naturally on everyone and everything, but if immunity is compromised in any way (ie babies have NO immune system), they can become pathogenic. Oftentimes, there is no indicator that this is happening in utero. The mother appears fine, baby appears fine, nothing is wrong until something happens, seemingly for no reason. That has been one of the hardest things to accept about Sebastian's death - it was just one of those things. If it were something tangible or something I did, I could at least say, ok I'll be more careful next time. But this was not the case.

I hope this helps a little, at least to know the pathology of infection in utero so maybe you don't feel so guilty about what happened. It was probably nothing you did wrong. Please take care of yourself. PM me if you need to talk..


----------



## coralsmom (Apr 1, 2005)

well, i just wanted to update. i have since met with our cnm, and i have made a follow up call to the mfm dept at the larger hospital. here is what was told me...

i didn't ask my cnm about the 'question viability of pregnancy' comment. i think that it may have been that she was interpreting what i was feeling about the spotting. i did ask about the pathology report and the diagnosis of marked acute chorioamnionitis. she said that if i had 'chorio'-which i guess is the short term for it- i would probably have known it because it makes you really sick. she said that the placenta could have been infected by the presence of meconium in the amniotic fluid. she was very firm in her feelings that this stillbirth is a big question mark. she did say that in her experience with stillbirths, in this country, most have been in post-due pregnancies, and this is why she doesn't like to see a woman go too far past the edd, esp if she has confidence in the edd from u/s and ovulation/conception dates. i bought up a question about the baby running out of amniotic fluid and squishing the cord- this apparantly can happen in post due pregnancies. she said there was plenty of amniotic fluid with coral's birth. so i left the office feeling like at least i had addressed the questions, and i still feel so comfortable with her, she is very caring and a good listener.

but... when i called my mom and told her about the meeting, my mom pointed out that she thought meconium was sterile as long as it was in the womb- sterile amniotic fluid, sterile baby, sterile pee, sterile meconium?? so she wondered how it could cause an infection in the placenta. well, i didn't know what to say to this. it made sense though. so i called the mfm dept.

i talked to a nurse for a long while on the phone. this was this morning. i was really surprised at her apparant care, concern, and desire to listen to me and answer my questions. i guess i think of that hospital as the nightmare place to have your baby- i definately have prejudged it. its very regimented and intervention crazy, but i forget that there are some people there that are not so sterile...(i found out later that she will be running the infant loss support group at the hospital). anyway, she had the pathology report in front of her, and i told her the history of what i knew/didn't know, as well as my recent meeting with my cnm. she said that in her experience, acute chorioamnionitis would be a probable cause of death in this situation. she said that there isn't really anything that could have been done, esp. since i showed no symptoms- she had recently seen a mom who came in for fever, they checked her temp, it was 102, checked the baby's hb, it was super fast, so the c-sectioned her and were able to save the baby. she also said that a woman had come in for a scheduled c-section, they checked the baby's hb, it was fine, and in the 15 minutes it took to go to the or, the baby died. i think she said that the infection could have been somehting that happened very fast, but she was very clear in saying that there could be no way of knowing why or how the infection got there, only that it was there by evidence of the pathology report. she was surprised that our local hospital didn't take 'delivery notes' i guess at that hospital, someone is noting things like color of amniotic fluid, etc, during the birth. if our hospital did, i don't have them in my general records. i know the hospital saves the hb strips from a normal delivery, and you don't have access to them after... so maybe there are notes somewhere that they dont normally include in a patient's file. so, i asked her if it could affect a future pregnancy. she said no more than if it hadn't had happened- just like you said, shannon. i also found out that i have toxoplasmosis immunity, which was a bit of a relief. my poor cat, he's been getting the cold shoulder recently in my suspicious state of being.

so when i went to coral's grave today, i felt so so so sad. i don't know if i feel like this was my fault, but i feel like her death was so stupid and useless and dumb and horrible- no one to blame, nothing to do, just to be without my baby, and she has had her life robbed from her.


----------



## Twilight (Jun 9, 2005)

I'm glad you were able to have those conversations with your mw and the nurse. I wish they were able to give you more closure too















for Coral.


----------



## dziejen (May 23, 2004)

Coralsmom,
I wish I could take your sadness away







I am glad that the nurse you spoke to was so caring - are you planning on going to the group she is running? It is frustrating that these babies die for no apparent reason -- it all seems so unfair and senseless.







You are in my thoughts.


----------



## behr (Dec 10, 2001)

Coralsmom, I have no advice but want to say that you are still in my thoughts often. I wish you so many good things and mostly a very healthy pregnancy and baby. Sending you much strength!


----------



## iris0110 (Aug 26, 2003)

Coralsmom, The info you got from the nurse sounds the same as what I was told by my midwife. In my case the infection was obvious through me, but my midwife said that this type of infection can come on fast and usually affects baby first (Arawyn died before I knew I was sick, and I went from being healthy to super ill in a matter of hours). I hope that this new information can bring you some peace, but I know I still had alot of questions. I don't think anything ever clears up all of the questions.

I did want you to know that I am thinking of you and Coral.


----------

