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Lean cord and proof we need more research...


Forum: Stillbirth

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  #1  
October 16th, 2009, 08:24 AM
NutMeg76's Avatar Platinum Supermommy
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So we now have three women here in our little group with lean cord as the potential cause of daeth of our babies. Yet, it is 'very rare'. How rare can it be when there are three babies that died from it in just our group alone?

Is it rare, or just rarely reported?

This is why we need to be vocal about still birth awareness. Until we get it an open topic for discussion, until we push for answers there won't be very much research done.

Would knowing Colm had a lean cord have saved him? No, he was too little either way. But in other babies where there are signs of a problem, and a lean cord is present, would delivering that baby save a life? Quite possibly.

I know I will have my next pregnancy scanned well and the cord measured. If it falls in the low end I will be much more deligent about everything, well not that I wn't be anyway, but you know what I mean. If having a preemie means a living baby and I have to opt for an early c-section or induction I will do it.
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  #2  
October 16th, 2009, 08:44 AM
Brittanie's Avatar just me
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I think that looking at our group kind of skews the statistics. While I totally agree that there needs to be a lot more research (afterall, more babies are stillborn than die from SIDS), I'm still thinking that it's probably fairly rare. I know more women online than just here, and you three are the only ones I know with this condition. Most of us had cord accidents in other ways.

Somehow you 3 just got clustered. Which is nice for the feeling that you're not alone.

It sucks all around. I'm tired of our babies being treated like they aren't "real" or "important" because they weren't born alive.
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  #3  
October 16th, 2009, 09:07 AM
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I think more research for all reasons of stillbirth needs to be done. These days babies that are born before full-term survive and are very heatlhy. I've read that in the '50-'60 the rate for stillbirth was around 50%, and even though it's much less now, it's still very high. Other areas of medical fields are way more advanced these days. It seems like there is one doctor in the US that does the cord study. It is hard to beleive that at this day and age there are still unknown causes of stillbirth, and nothing is done to prevent it. I agree that we need to be more vocal about it and push for more funding/research on this topic.
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  #4  
October 16th, 2009, 09:14 AM
MeganMomof5's Avatar Platinum Supermommy
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What I don't understand is how they don't pick that up in ultrasounds? at Ella's ultrasound they looked at her cord and her belly...I'm going to do some more reading today while the kids are gone...Did any of you guys with lean cord ever have any suspicions that something was wrong? I had a few...Ella did not move as much as my other babies did, never as strong and never as much...Her heartbeat was always hard to find everytime they looked for it, and even when they did find it, it was never loud on the doppler...During all my other pregnancies it was very easy to find, and always loud and clear...I also had spotting, something I had never had with my other pregnancies...I know they say that's normal, but it's just something that's never happend to me...She was also really curled up and hard to look at during her ultrasound, which I guess could be normal, but I remember thinking that she looked so different...She was also small, messured smaller than my weeks...My other pregnancies always messured right on....One more thing, did they give you the lean cord for reason of death?
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  #5  
October 16th, 2009, 10:05 AM
NutMeg76's Avatar Platinum Supermommy
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I was meaning all research for all forms of stillbirth, not just lean cord. There is probably hundreds of different reasons for stillbirth, and I am confident many of them can be prevented.

I was not given lean cord as a diagnosis, my midwife just noticed it was think where it entered his body and thought it may have contributed. I know they didn't mention it in his autposy, nor was it listed on his death certificate. That is why I feel like it may actually happen more frequently then it is reported, or even mentioned to parents because doctors don't recognize it as a problem.

As for the feelings? Yes, Megan, I knew all along something was 'wrong' with his pregnancy. I spotted, which never happened with my other 4. He measured a week behind at the 20 week US, again not normal for my babies. Heck, my smallest was 7 lb 1 oz and my largest was 9lb 14 oz, so not small for gestational age ever during pregnancy. I wonder if I could get the radiologist to re-read my US and see if there were measurements taken of his cord width.
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  #6  
October 16th, 2009, 10:12 AM
MeganMomof5's Avatar Platinum Supermommy
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let me know if you find anything out...I was never told Ella measured small, but I noticed all the measurements during the ultrasound and I was measuring around 18 weeks and I was over 19...If I recall one might of even said 17 weeks and some days, but I can't remember exactly...I'm not sure if they did measure her cord, but the ultrasound tech showed me and said this is her cord and then showed me her belly, but I couldn't make anything out and really the last thing on my mind was that anything was wrong.
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  #7  
October 16th, 2009, 11:10 AM
SarahBethsMommy's Avatar Mega Super Mommy
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Yes, I completely think that more research needs to be done on stillbirths and their causes. We have no reason that Bryan Luke died. Nothing more to watch for in our next pregnancy. He was there one day and not the next. Heartbeat was strong one day and completely gone the next.

However, I'm just as terrified of premature birth. My daughter was SO sick for so long and still has issues today from being born so early. And so many of my friends' preemies never came home with them. Their experiences were often the same as mine with Bryan Luke. They were fine one day when they left and in the middle of the night everything went really wrong and suddenly they were gone.

Just saying that premature birth isn't the answer.
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  #8  
October 16th, 2009, 11:18 AM
NutMeg76's Avatar Platinum Supermommy
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No premature birth is not the answer, but there are times when the baby has a better chance at life outside the womb than inside.
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  #9  
October 16th, 2009, 11:52 AM
Brittanie's Avatar just me
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I think that a lot of doctors don't mention things that "might" be a risk if they see them, because they don't want to "worry" the woman, and it's not definite. I know a woman at my church who is a prenatal ultrasonographer, and I showed her Cora's 22 week ultrasounds. She agreed that it was very clear that Cora's cord was wrapped twice around her neck then. And then she said that a lot of times they don't mention it to the mother because they don't want to "worry" them.

Which rightly makes me angry.

Anyway, the National Stillbirth Society is a great page to look at and they talk about research and donations and other things you can do to help.

I know at some point I filled out a survey that talked about when gestationally she died and cause of death and such things, but I can't find it now...
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  #10  
October 16th, 2009, 11:55 AM
NutMeg76's Avatar Platinum Supermommy
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Argh, that is exactly what makes me angry. If you had known about her cord, you 'might' have worried and when she had those moments of activity that you thought were odd, you would have gone in and been checked right away. Worrying, 'might' have saved her life.
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  #11  
October 16th, 2009, 11:57 AM
Brittanie's Avatar just me
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Exactly. Especially since the night she died, I was at work and I told a coworker (who was not on shift, she had just come in to visit) that I thought I was leaking fluid, and "just felt off." She offered to take my shift so I could go to the hospital. I decided that I was just being paranoid and I would go home and see what happened in the morning. The next morning she was gone. That little bit of knowledge could have saved her life.
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  #12  
October 16th, 2009, 12:22 PM
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MeganMomof4-the [roblems I had were at 16 weeks I began having severe morning sickness, all day all night every day. With lots of vomiting. I kept saying at my appointments that my morning sickness was "pretty bad" but the doctors never inquired firther so I just sort of assumed it wasn't a problem. But my urine became dark and more highly scented which I later found out was because I was losing my fluids through all of the puking. This can lead to growth restriction and on Roald's autopsy report it said the type of growth restriction that develops later in the pregnancy was evident (meaning the baby grew fine and whatnot in the first trimester but sometime after factors arose that lead to growth restriction and baby being small for gestational age).

And yeah at our 21 week ultrasound he measured a week too small. They called us nearly a week later to tell us that though and set up an ultrasound for November 19 (our 21 week ultrasound had been October 23). Well I had a regular check up on November 13 and that is when we found out he was dead and had been for about a week. After knowing he died I knew that about a week before I had been vomiting every other day not every single day like previously and I also felt what I thought was different movement (I had never been tht far into a pregnancy before so I assumed it was just him growing and feeling different). But really it was no movement and him just shifting around.
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  #13  
October 16th, 2009, 12:33 PM
MeganMomof5's Avatar Platinum Supermommy
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thanks for sharing....I was also throwing up, well only 2 times, but I wasn't sick to my stomach...It was really strange because I just started to throw up without any warning...I threw up on saturday morning the 3rd of October, and then I think again 2 or 3 days later...The 2nd time was really bad, it was nothing like I had ever experianced before...I found out she was gone on the 7th and my last recorded strong movement was the 30th of September and I was also in alot of pain that day and I think the next day...If I did think I was feeling movement after that, it wasn't strong, it could of been her shifting around (I felt that even when I was in labor)...Sorry if these dates are out of order, i just keep going over and over in my head...Thursday and friday the 1st and 2nd of October I felt "off", I didn't feel sick, but I didn't feel well...Satuday the 3rd is when I woke up sick, I had a fever etc...Like I said though I didn't feel sick to my stomach, I just threw up for no reason....I wish I could go back and realize that something was happening to me and called my doctor...I even posted on my DDC about being sick and in pain...I thought it was nothing serious, but now I know that's probably when she passed away
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  #14  
October 16th, 2009, 02:12 PM
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jessica died because of the cord being round her neck 3 times i was 26 weeks at the time or so i thought they told me she was 24 weeks and id got my dates wrong so they said i was 24 weeks, i knew my dates i even asked when she was born if she looked like a 26 weeker they said no more like the size of a 24 weeker!

i had a scan the friday before she was gone on the wednesday and they never said anything! it makes me wonder if the cord was wrapped round then and had been and it restricted her growth

i asked sometime after if they can see the cord and if it was round a babys neck they told me NO which is a complete lie cause i asked at every scan with keeley heck they even showed me where it was
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