Saturday, January 17, 2015

MFM = Maternal Fetal Medicine, or things I didn't know before.

The other day, driving home, I heard one of my old favorites on the radio, Bob Seger, singing, "I wish I didn't know now what I didn't know then."

That could be the thesis statement of this post.
Since Lydia died, Justin and I have done A LOT of research, about stillbirth and cord accidents specifically.  It is still so hard to believe that my perfect little baby girl just cut off her supply line.  I'm not sure I've ever even heard of it before it happened to us.  (One thing I know now that I didn't know then: the odds are .15%.)

For the record, I am not pregnant.
But we are proactive people.
Before we even think about that, we want to have a plan in place.
We want to know what will be done to prevent what happened to Lydie from happening again.
I can't bear the thought of it happening again.
I'm not sure I could survive that.

So, besides all our reading, Justin and I have also spoken with Dr. Jason Collins, the only doctor in the US who studies umbilical cord accidents.  Not a conversation that brought us reassurance, as he claims that umbilical cord accidents are not a fluke, not sporadic - which is what most other obstetricians claim.  And at this point, I've had two pregnancies and two "cord incidents," one resulting in the death of my daughter.  He puts the risk at 1 in 7 in a subsequent pregnancy also having a cord incident.  Scary, right?  So freaking scary, as if a subsequent pregnancy wouldn't be terrifying enough without hearing this statistic.

Dr. Collins used to monitor women who had had a previous stillbirth due to a cord accident in their subsequent pregnancy.  He used a fetal home monitoring system, where every evening the women hooked themselves up to a monitor and he was able to see the results from Louisiana, where he lives.  I've talked with one woman, who did this.  One evening, he told her to go to the hospital and refuse to leave.  Her baby's heartrate was monitored at the hospital and they told her everything looked fine and tried to send her home.  She refused, and her daughter was born, healthy and alive, in the middle of the night after emergency c-section.

So of course, I'm thinking, sign me up.  Until I learned that Collins is no longer able to offer the home monitoring system because the company no longer makes the monitors.  I'm sorry -- what??  Are we completely moving backwards?  This research is being done, proven that it's effective, and then the company stops making the freaking machines???

So instead, Dr. Collins advised Justin and me on what kind of care I should receive in a subsequent pregnancy.  It's a detailed plan, including an in-depth ultrasound scan at 20 weeks examining the cord in various ways, including measurements of the cord and measurements of both attachment sites.  It also includes non-stress tests twice a week (of which Dr. Collins wants to look at the results) and ultrasounds once a week beginning at 20 weeks.  Non-stress tests monitor movement, heart rate, and reactivity of the heart rate.  Collins thinks that Lydie's heart rate would have shown decelerations indicating that her cord was being compressed.  I never had an NST when I was pregnant with Lydie.

Dr. Collins believes that NSTs should be done with every low-risk pregnancy.  He makes the point that listening to the heartbeat only tells an OB that the baby's heart is beating right now.  He thinks that the placenta and the cord should receive just as much attention as the baby, because if anything is wrong with the placenta or the cord, it will harm the baby.  He thinks pregnant women should always be advised to count kicks, and taught how to do so.  I didn't count kicks in either one of my pregnancies; my doctor never even mentioned it to me.  She'd just ask, "Lots of movement?" 

But Dr. Collins' research isn't well-known within the medical community.  My OB had never heard of him.

Yesterday, my mom, Justin, and I went to meet with a perinatologist, or an MFM, maternal fetal medicine specialist.  Basically a high-risk doctor.  His office is in the hospital where I delivered both my children, and my anxiety was sky-high just walking in the door.  Hello, PTSD.

My own OB was supposed to meet us there.
I had a dream that she wouldn't show.
She didn't show.
 (Apparently, her daughter was sick.  But I just can't get over how many times she has disappointed me.  She makes all these promises, but in these big, important moments, the birth of BOTH my children and now this wildly important meeting, she doesn't even show up.)

The MFM called Lydie's cord accident "sporadic."  He won't do the kind of care that Dr. Collins recommends.  He said even if he took measurements of the cord, he wouldn't know what to do with them because the American Congress of Obstetrics and Gynecology has no published standards.  He said he could not be responsible for collecting data that he wouldn't be able to use to make decisions.  There's no accepted chart, no norms for cord length, no suggestions of what diameter of the cord indicates a problem.  He suggested that Dr. Collins be my primary care OB instead (um, he's located in Louisiana so that is not so feasible for our family.)  And we are realizing it's all about being worried about being held liable and litigation and his insurance covering him.   He won't take measurements and then follow Dr. Collins' suggestions, because I could sue him if something goes wrong.

The MFM's plan was to watch blood flow through the cord at 20 weeks, then start regular ultrasounds.  At 30 to 32 weeks (and possibly as early as 28), we'd start NSTs and biophysical profiles, which check movement, heart rate, breathing patterns, and amniotic fluid.  And we'd plan a c-section for 37 weeks.  That's three weeks later than Lydie died, so doesn't offer me a lot of comfort.

He said he'd talk to his colleagues at other hospitals in the area, see if anyone would recommend anything different, see if anyone else has had more experience with cord accidents or Dr. Collins.

The people I've been talking to at Star Legacy Foundation have reminded me that I'm the consumer here.  If a doctor won't give me the kind of care I want, then I find another doctor.  But the truth is. I don't think any doctor - in Columbus anyway - will give me that kind of care.  Dr. Collins's research is not accepted yet, it's considered controversial at best.  So instead, doctors just hope it won't happen again. No doctor is going to do anything that is not endorsed by their Congress. And it's so frustrating that doctors are going to be more concerned about being sued than making sure I have a healthy, and living, baby.

So I'm not sure where we go from here.
In some ways, I wish Justin and I could be like so many other people I've met, who just hear that it was a fluke and accept that, without doing additional research.  Sometimes I wish I didn't know so much.
Sometimes the more I learn, the more freaked out I get.

But there are mothers who have had more than one stillbirth.  Dr. Collins sent me an article about a mother who had THREE stillborn babies, all due to torsion of the cord.  I'm really not sure I could survive that.

If you are my fellow Baby Loss Mamas who have rainbow babies, I'd love to hear what you think here.  I realize it's a leap of faith and a HUGE risk regardless, but what kind of medical care did you receive in that subsequent pregnancy?  Was it enough?  Did it help with your anxiety and feel safer?  How much research did you do to lower the risk that it would happen again?  Did you find that different perinatologists are willing to offer different levels of care?  Any and all suggestions appreciated.

8 comments:

  1. Oh Heather.

    I almost talked about how hellish a subsequent pregnancy is in a comment a week ago, but deleted it because I didn't want in introduce a topic you weren't ready to think about yet.
    Because…yes. Another pregnancy after stillbirth is really, really hard. Because you want to control it. To basically guarantee it won't happen again. To have The Best Medical Team of Pregnancy Experts caring about the outcome as much as you, and doing everything in their power with all our modern technology to ensure you bring home a thriving, living sibling to the two children you already have.
    Medical litigation fears are real for physicians, wildly frustrating for customers, but it's the world we live in and there are few medical personnel who will be willing to risk their career - even for your child.

    I speak on a parent panel a few times a year to perinatal nurses about what it's like to be pregnant after one of your babies dies inside you. They keep asking me back, so feel I must be saying something that resonates. I say we are CRAZY. 24/7. That we might be reassured by the biophysicals and NSTs for all of maybe 15 minutes, 2 hours tops. Then we're right back to terrified because that was then…what if something has changed? That other pregnant women are not peers to bond with over our similar experiences, but competition. Will her baby die, or mine? Who will draw the short stick, because we can't possible ALL have good outcomes. And more…

    I was on a plan similar to what your MFM suggested. At about 28 weeks starting NSTs and biophysicals, up to two a week in the last two months. Plus I went into L&D in fear 3x after 9 PM because my kick counts weren't perfect. I also went in every freaking time I just needed to, and they used the ultrasound machine so I could see she was ok - starting from 6 WEEKS. I never went longer than a week without getting checked. Never. (Remember though that I'm an old (46 now) infertility chick who used IVF, so we were vigilant literally from Day One.)

    My suggestion? Find a doctor who says he will let you come in as often as you need, and staff that will be supportive of this as well. The front desk, the nurses, they all need to be on board and not give you grief when you're concerned, need to ask a question, or need to come in for a sanity visit.
    I found that. And it made all the difference.
    Our doctor took Cate at 38 weeks by c-section, having lost Anna at 39 (also by c-section). Whether we fell into another crappy statistic or whether we took her too early, we'll never know, but she was in the NICU 9 days with difficulty breathing.
    I know you don't want to hear this, but no one can guarantee you a healthy, living child. It's terrifying to write, even after all this time, and I know it is for you to read as well. Which is why no matter what you do, who you have on your team, you're not going to feel better or secure until that child is wriggling in your arms. No matter what you do - or anyone else does.

    ReplyDelete
  2. Yep, I'm so wordy blogspot won't let me get it all in one comment, :)

    Getting pregnant again is one of the biggest leaps of faith you'll have. And by faith, I mean that your'e clinging to the thread of hope that this time it will be okay. The great majority of the time, it is. But because we know we're not immune, that lighting DOES strike twice, that there's no grand score card that says, "Oh, this family has had enough suffering. Let's move on"…we just get to gut through on sheer force of personal strength and desperation for a living child we long for, so much. Knowing that going through this will be hell, but you can't live with the thought of NOT at least trying either.

    There are many, many BLMs who have done this. The vast majority of us have gotten there. But I know one that didn't, and one that almost didn't and the latter has her second rainbow because her MFM was awesome and that Mom was doing everything you're talking about. Being proactive, a fearless and unstoppable advocate for her child, and willing to do whatever it took to give them the best chances of bringing their baby home, alive and well.
    I'm confident we all have a lot of thought on this topic.

    Just know if/when you head into it that your fear is real and VALID. Valid. You're not (really) crazy, just scared and operating from PTSD. And you're not alone in having clawed your way through a pregnancy. Even if turns out to be the most normal pregnancy in the world.

    ReplyDelete
  3. Omg, before I read the part about those home monitors not being offered anymore, I was ready to call Dr. Collins and get signed up for that too!! I did have two heart rate monitors at home, which I used several times a day if I was unsure. As I have told you, it takes being demanding and unpleasant at times, but you have to be the take-charge advocate bc the drs are only going to do so much. I had to absolutely throw a fit to have Kellan delivered when he was, and there is no doubt in my mind it was the right call. The MFM refused to discuss it for at least another week. My OB went behind his back after I lost my shit on her. I will not see the same MFM again. My advice is to do a little doc shopping before you commit this time. Altho the MFM's care plan sounds pretty standard (as I told u mine wouldn't do NSTs before 28/30 weeks either bc there isn't anything they can do), but still, if you aren't comfortable, find someone who can help you. Also, goodness I so agree w Dr. Collins on further monitoring low-risk/normal pregnancies. Bc you aren't usually high-risk until you have a negative outcome which is so damn sad. :/

    ReplyDelete
  4. Thanks ladies. I am hoping to meet with an MFM that is was recommended to me. My OB sounded a little surprised that I wanted a second opinion. But hello, after what I've been through, I think talking to at least one more doctor is not asking too much. And Julie, I don't blame you at all for all the trips to L&D. And I also have been reminding myself that no one can guarantee a healthy, living, breathing child. Just want to make sure we are doing everything we can, before we take that leap of faith. At which point, I think I will need to back off the research and trust the plan. Cautiously trust the plan that is.

    ReplyDelete
  5. Hi Heather,

    It's so great that you're doing your research and sharing your findings so people like me can benefit too. I've only just started to think about all of this, and I think I am of the camp that while bad things do happen in life, many good things happen too and we have to take a leap of faith. We are both blessed with beautiful, healthy toddlers and we have to believe that we can have another even after our losses. And hopefully, faith plus a great care plan will get us through. On that note, don't give up on finding the right OB for you, even if you have to drive an hour to see them! If you don't feel right about yours, then find a different doc. Period. This is way too important to feel bad.

    No matter what happens, know that you are strong enough to handle it and you have many, many people who love & support you. Here if you need to chat.

    Laura
    www.alongcameollie.com

    ReplyDelete
  6. It is great that you are doing your research, it inspires me to start doing the same. We aren't trying but not preventing either. I'm terrified to get pregnant. Could I live if this happened again? I trust my doctor but not the MFM that she works with. (Hours before my daughter was born he told us she would be early but fine. He came back after she died and apologized.) I also had many NSTs, all perfect. I listened to her perfect heart rate on the monitor for hours! I was the one who knew something was wrong and I was right. How can I trust these people to help me keep my baby alive? We are going to be maniacs no matter the outcome. I truly hope you have the perfect healthy pregnancy you deserve.

    ReplyDelete
  7. I've been meaning to come back to this post.

    I did a lot of research about Dr. Collins as well, but didn't contact him. At the time the home monitors were still available and I had a friend who did use him for a subsequent pregnancy (which was uneventful and resulted in a living baby).

    We saw a new doctor (the one who actually had told us our son Cale died - when he did that ultrasound we had never met him before, he just happened to be on call and was so kind we sought him out for my next pregnancy). He was the only one I saw and I saw him every two weeks. Then I started NSTs at 29 weeks and did those twice weekly and a weekly BPP. Once I hit full term he gave me the option of an induction (which we decided on at 37+3 for our second son and 38+2 for our third - our daughter). Because I trusted him, I felt like I was doing all I could to get my baby here safe. I got the shit end of statistics once and knew it could happen again, but just hoped it wouldn't. It was the scariest thing I've done (the first pregnancy after loss - the second one was easier), but it was the bravest thing too.

    I hope you find someone who gives you WHATEVER you want - be it an ultrasound at every appointment or just an extra 10 minutes to ask about anything and everything.

    XO

    ReplyDelete
  8. Hi.. your blog is really good, very Help ful for all. Thanks for sharing this
    Kindly visit my blog also........Twelve channel ECG machine

    ReplyDelete

 
Blog Design by Franchesca Cox