Saturday, December 6, 2014

The cord

So, the cause of Lydia's death was determined to be a umbilical cord accident.  We saw the part of the cord that was constricted.  My doctor later told me told me she thinks Lydie had a narrowing in her cord since conception.  Then she moved in a way that caused that narrowing to constrict completely.  The perfect storm.

So we know understand a bit more of the how.

What we don't know - and likely never will - is the why.

Why did her cord have a narrowing?
Was it genetic?  Was it a fluke?

Why did she move in the way that caused the cord to constrict completely?  Isn't the Wharton's jelly supposed to prevent that?

Why why why?

It was a few weeks after Lydia died that Justin reminded me that after Ben's birth, our doctor sent away his umbilical cord for testing.  It was a traumatic birth - a post for another time - but his heart rate dropped dramatically every time I had a contraction.  After 16 hours and with Benjamin's heart rate plummeting, I was rushed in for an emergency c-section.  We got him out in time, and Ben was fine.  But my doctor thought his cord might have something to do with the dropping heart rate.  She sent it away for tests and weeks later, told us the results were inconclusive.  I'm not sure we ever asked questions or thought about it at all while I was pregnant with Lydie.  We had Ben, and Lydie looked completely healthy.  We had a scheduled c-section.

And now I wonder - was there something wrong with Ben's cord too?  Did we just get luckier with Ben than we did with Lydie?  And I wonder - what if we had pushed for more answers about Ben's cord?  Would we have realized that there was the potential for problems with Lydie's cord too?  Would my doctor have thought of that and ordered more tests?  I now know that you can't see the cord with a typical ultrasound, but you can order more tests.  You can watch the blood flow through the cord.  High-risk OBs do more monitoring of the cord.  High-risk OBs have different equipment for ultrasounds.

There was just no reason to think I was high-risk.

Our baby was completely healthy, until she wasn't.

I had four ultrasounds with Lydie.  Four.  A usual pregnancy has two - at eight weeks and at 20 weeks.  I had an extra one right at the end of the first trimester, when my doctor couldn't find Lydie's heartbeat.  "She's small, probably just hiding," my doctor told me as she led me into the ultrasound room.  That was the case then.  Our baby's heart was beating strong.  No cause for worry.  I had another one two weeks before we found out Lydie's heart stopped beating.  Two weeks earlier, my doctor and I watched my little girl on the monitor.  I was measuring small for 32 weeks pregnant, and my doctor wanted to have a look.  And there was Lydie on the monitor, perfectly healthy.  Measuring in at the 50th percentile.  Perfect.  No cause for worry.

At that ultrasound at 32 weeks, I even watched her lips moving.  I actually watched her lips moving.  

And at 34 weeks, no heartbeat.  "Didn't we just see her two weeks ago?" my doctor asked, seemingly flabbergasted herself.

The medical community seems to dismiss stillbirth.
"These things just happen," they say.

30,000 stillbirths happen a year.  30,000.
Compare that to 2,000 deaths due to SIDS.
Fifteen times the amount of babies die due to stillbirth than due to SIDS.
Do you know how much you hear about SIDS compared to stillbirth?

There is one doctor in Louisiana that studies stillbirth due to cord accidents.  One doctor who isn't just dismissing this as "something that just happens."  One freaking doctor.
I find that so completely frustrating.

There is also one doctor in Japan, who looks at each baby's umbilical cord, regardless of risk factors of the mother.  He hasn't had a baby die due to a cord accident since he started this practice.

I don't want to be told these things just happen.  I don't want to be told it just happened to happen to MY daughter.

I want the medical community to talk, really talk, about how they can PREVENT these things from happening.  I want them to do more research.  I want more than one doctor studying this.   I want them to look at mothers who are taking care of themselves, and ask why it is still happening.   I want "sometimes this just happens" to be completely and totally UNACCEPTABLE.

And, more than anything, I want to go back to 32 weeks when my daughter was perfect and healthy with a beating heart.  And I want to know then what I know now.







4 comments:

  1. This seems crazy. And awful! How can doctors dismiss deaths that ultimately could be preventable with better monitoring?? Obviously no big foundation, or medical technology company, has put money behind research. Grrr. I didn't know any of this before...

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  2. Hi Heather, Brooke shared your blog with me. I am so, so sorry for your loss. I wish your little girl was here with you and I'm sorry for how hard this Christmas must have been. My first child, our son Cale, was stillborn in 2010. We have been lucky enough two have two more children. Cale's cord is believed to be the cause for his death as well. Like you I did research about Dr Jason Collins, though decided not to see him for my first pregnancy after loss though I have a friend who did. It's maddening how little is reported about still birth. It's maddening that it happens so much more than we all used to realize and it's maddening it keeps happening, to people like you, who were so very ready to love that little girl with all your heart and spend a lifetime with her. I'm so sorry you got so robbed of that. If you need to vent, I'm here. We are here. It will never get better but it will get easier.

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    1. Thanks Caroline. I have also read bits of your blog so I know some of your story. So it's good to hear from you. I too am so sorry about Cale. And I also believe shit just happens. Can I ask why you decided not to see Jason Collins? I haven't contacted him yet but I plan to.

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  3. My doctor told me that so often she delivers babies with the cord around their necks 3 or more times, and they are "perfectly fine." I'm not sure why she told me that (more than once), because every time she said it, I wondered why our baby died then. I can hear her Indian accent and her matter-of-fact, "You have a dead baby." She just dismissed it as a fluke. Our baby's cord went from her belly, half-hitched around her neck and behind her knee, so that when she extended her leg, it constricted her airway. Would we have been able to tell with those monitors that can see the blood flow? I asked my doctor if I needed to see a specialist, or if there were any ways to tell if the cord was ok and she said NO!!!!

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