Jay – umbilical cord pathology scan 1

We had our first umbilical cord pathology scan for Jay on April 27. Short update – fortunately, no cord issues were noted. But we realize the cord will continue to move, which is why we’ll be looking at it a few more times, though fingers crossed each appointment will be equally uneventful to this one. If you’re interested in more details about my appointment and what the actual scan entailed, read on…

DISCLAIMER – I’m not a doctor. While I’ll try to avoid reporting any factual inaccuracies, I might not sound completely scientific either.

So one random tidbit… Right after I was sick in April I developed a couple hundred red bumps all over my body that looked like chicken pox or measles but I knew it wasn’t any of these things so I googled it and concluded it was a mild case of PUPPS, which is a pregnancy-induced rash (google it only if you want to be grossed out, because most cases don’t appear so “mild”). I consulted with my doctor and she was unconcerned but then at my appointment the nurse concluded it’s actually more likely stress-induced hives exacerbated by my weakened immune system from the virus, which speaks to the authenticity of my post on anxiety and exhaustion, just sayin’…

Baby Jay is still measuring about a week ahead. Though the purpose of the appointment was to look at the cord, Jay’s growth looked good too, which is a positive thing…

Here’s a rundown of the cord-related stuff…

I’ve mentioned that we had to be super persistent with making this appointment. Most doctors don’t want to look at the cord, even if you’ve lost a baby to a cord issue (which makes no flipping sense), and some flat out refuse. Though we were lucky not to have been refused it, we were still the main drivers in ensuring this appointment came to fruition.

We did the scan with my maternal fetal medicine doctor (MFM). Though we would have been fine doing the scan with any willing doctor with a high-quality ultrasound machine, my MFM just happened to be the lucky winner, as he seemed willing and also has a GE Voluson E10 ultrasound machine, which is supposedly one of the best on the market.

About one month prior to my appointment, I emailed my MFM some literature with instructions on how to look at the cord. Most of the materials came from Dr. Collins, and I also provided an electronic copy of Dr. Collins’ book, Silent Risk, which can be purchased on Amazon for the bargain price of $3.99 (for Kindle).

We tried to familiarize ourselves with the materials prior, because we didn’t really know whether my MFM would read any of them given the scan wasn’t his idea in the first place. But, much to our pleasant surprise, it was evident he had read at least some of the materials. And so had his amazing sonographer!

I did get a small (though not to the level of bothersome) vibe from my MFM reaffirming he is only doing these scans to appease us versus doing them because it totally makes sense. He asked again, “So we’ll repeat this at 28 and 32 weeks (I was ~24), but if we find a nuchal wrap, what are we going to do? We aren’t going to deliver… So I guess we’d just monitor you more? Like give you non-stress tests every other day or something?” To which I replied, “Yes, actually. This is exactly what we’d do.” (Funny how he answered his own questions.)

Our sonographer was all over looking at Jay’s cord, which was OMG-so-appreciated. We’re hoping to get future appointments with her for consistency purposes. She performed the following procedures…

  • Looked at cord insertion into the placenta (it should be in the middle) to rule out a marginal or velamentous cord insertion
  • Looked at cord insertion into baby
  • Tried to get as many pictures of the cord as possible at various points, in various positions
  • Turned on color Doppler several times to try to identify presence of knots or torsion/hypercoiling (though a healthy cord is supposed to contain gentle twists)
  • Viewed a cross-section of the cord to ensure presence of three vessels; measured width of cord as well as width of the vessels
  • Checked for presence of Wharton’s Jelly surrounding cord, though it wasn’t super clear whether there’s an actual standard as to what the proper amount is and whether one could actually measure it by ultrasound, but I guess it was nice to have her verify that there is some?
  • Checked neck and various extremities for presence of wraps/entanglement; no nuchal wraps were noted, but if one were to be, we’d have asked for pictures to help us determine whether the nuchal wrap was type A or type B
    • Type A – Can slide down baby’s body without issue
    • Type B – If it slides down baby’s body, it will form a true knot
  • Measured velocity of cord blood flow using sound imaging near the insertion point into the placenta and into the baby to check for consistency; viewed this on the screen as well as listened (like a heartbeat, almost) for said consistency
  • Looked at other extraneous items such as placental size, positioning, and blood flow for good measure

*Before I continue I want to emphasize that few (if any) of the aforementioned procedures are part of ACOG standard of care. Though I’d be willing to bet that most assume that they are. I think this is a major problem.*

But anyway, again, no issues were noted. We are so grateful and are hoping so hard that it stays this way. This pregnancy is honestly stressful enough without any known cord issues.

We requested all of our images on a CD, which was provided to us at the end of the appointment. We’ve shared all of these images with Dr. Collins, so he can provide his second opinion, as well as let us know if we missed anything. I don’t think he’s looked at them yet, so we need to follow up with this…

I’m glad I went through with this appointment. And I’m not just saying this because it turned out well. I know finding a cord issue would feel devastating and also potentially add to my stress levels. But my stress levels are already pretty damn high, so… I really don’t think I’ll ever feel relaxed about this pregnancy until I’m holding my crying baby. And then there will be new types of stress…

The other day (right before my cord pathology scan) I posted in a forum, “For those of you who lost your babies to umbilical cord accidents, are your doctors looking at the cord this time?” And the responses were mixed… I was inspired that most, like me, had successfully convinced their doctors to do it. Some hadn’t yet asked. Some had decided they weren’t sure they wanted the extra stress that any sort of finding might bring. And some had been talked out of it, told that the cord can’t be seen on ultrasound or told that if an issue were noted nothing could be done about it anyway (which, I’ll point out, is in direct contradiction to the statement “cords can’t be seen on ultrasound”). And some had been refused.

If you’re reading this and would like your doctors to look at your baby’s umbilical cord on ultrasound, know that you don’t have to accept being talked out of it or being refused. If you request this type of monitoring, and you’re refused, I encourage you to ask again. And again. And be willing and able to articulate why you want it. And, if you’re still refused, you have the right to find a new doctor who’ll listen to your concerns and take them seriously, because your concerns are valid.

In my months of interactions with others in the baby loss community, I’ve learned that the level of care you receive in your subsequent pregnancy (or, actually, in any pregnancy) is often a direct function of how strongly you advocate for it. So trust your doctor (this is what he/she’s there for), but also don’t be afraid to question and advocate if you feel it’s necessary.

No amount of scans and monitoring can guarantee a happy outcome. We’re simply not always in control. But you’re entitled to the type of care that matches your comfort level.

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12 thoughts on “Jay – umbilical cord pathology scan 1

  1. Would you be willing to scan or post the literature with instructions on how to look at the cord? I already have the book silent risks. My daughter died of a triple nuchal cord & double body loop. I am currently 28 weeks pregnant and my MFM doctor has been sceptical but willing to do more detailed scans for me. I would like to send it to my sonography as well since I know her better as well (both socially and professionally) . The good news is I am having weekly ultrasounds (which I had with my daughter too so this isn’t fool proof) starting at 30 weeks & doing twice a week NSTs.

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    1. I’ll try to post here, but I’m not sure if I can since some of the documents are .pdf attachments… If you send me your email address (under contact info) I’d be happy to forward you the email I sent to my doctor. I’m doing something similar with ultrasounds and NSTs… Hoping it provides comfort and the opportunity to identify any issues that arise, though I mostly just hope it’s all for nothing and there are no issues. Hoping this for you too. And for everyone. PAL is so terrifying. Sending huge hugs.

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      1. So here is my email address. Meghan(at)Sonstegard.com. I wish all that we are doing would provide some semblance of comfort but I have just decided that I won’t feel better until I can a screaming baby in my arms. PAL is terrifying. I wish I could relax & enjoy it a bit but that hasn’t been the case for me. I just want this to be over. Thank you for sharing information & your thoughts here too. I considered starting a blog after reading yours but just haven’t been brave enough to do so. Hugs.

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  2. Christine I just want you to know that even tho I don’t comment much anymore I am reading. I am so glad that Jay is doing well and that the first cord scan went well. I am so sorry you are experiencing such high anxiety and stress during your rainbow pregnancy (but it is completely understandable and justified). I am always thinking of you, Mark, Matthew, and baby Jay. Much love and light. Tina

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    1. Thank you so much, Tina. I think of you and Mark and Larkin all the time. I’m sending you so many well wishes for the coming months, and I’m really hoping Landon’s Legacy Retreat is healing too. I really hope you’ll fill me in on it. Sending so much love and many hugs, Christine

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    1. Thank you. And, yes, I agree, and it makes me mad too. And what makes me REALLY mad is that so many medical professionals say, “We can’t see the cord on ultrasound.” It’s like, “Yes, yes you can – you just don’t want to.” Some honesty would be a good start with improving standard of care.

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  3. I’m so glad you are a voice and advocate for this. And I’m happy to hear there have been no issues so far for you and you are getting the proper care that you need. From my experience so far, the ob gyn community and their staff and sonographers are not receptive to hearing about change and talking about how stillbirths can be prevented. It’s so frustrating when you get “these things just happen sometimes”…But actually they don’t have to. They can be prevented sometimes. I would also be interested in the information Dr. Collins gave you to pass along to my doctors and sonographer in the future. Should I reach out to him directly? Thanks Christine.

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    1. Hanieh, Thank you for your kind words. I too hate the “this just happens sometimes.” Yes, maybe sometimes, but not all of the time. And we could absolutely be doing more to try to improve the statistics. It is so frustrating you’re finding those in the medical community to be generally unreceptive. I’ve found some of the same, which is why I’m continuing to speak out on these issues and call people out (when I have the opportunity) when things don’t make sense. I’d be happy to provide the info to you – if you send me your email address, I’ll forward you what I sent to my MFM. I’d also encourage you to talk to Dr. Collins as well… He’s good at providing additional advice on what to say should you run into roadblocks, and he’s also participating in my care (e.g. reading images, possibly some NSTs, etc.). He frequently takes calls from patients like us who’ve experienced a loss. Sending hugs to you. xoxo

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  4. Hey friend, first of all, Silent Risk is available on Kindle? Good God, I bought a hard copy and photocopied it because I knew once I gave it to an MFM, I would never see it again (so as far as copyright protection, I did buy the book and I’m pretty sure he didn’t read it…)

    This would have been such a helpful post for me over a year ago. I talked to Dr. Collins a few times before I got pregnant with my rainbow, but honestly, I couldn’t talk to him once I did. I found he raised my anxiety a lot. I did have Justin call him at one point to debate BPP vs NST. So good for you for following up with him as well.

    This is such a strong post to help women advocate for themselves. I wish cords were looked at every single pregnancy. (As Dr. Collins told me, there are three things they should be studying: the baby, the cord, and the placenta. If one of these has issues, the baby has issues). I will ALWAYS wonder if I had had an NST with Lydie if she might have had a deceleration which would have indicated she was under distress. She had a small narrowing in her umbilical cord, one spot which lacked Wharton’s Jelly. There’s not much research out there on Wharton’s Jelly either. We know she had that spot that lacked it and she moved in a way that the cord completely constricted at that point. But we don’t know WHY she had that.

    Keep advocating for Jay. You’re such a good mama to both your baby boys.

    Also, I wish I could meet you and Brooke for pizza and ice cream too. And Nora too!

    Liked by 1 person

    1. Yes – it is on Kindle. And somehow Mark was able to convert it to a shareable copy, albeit there were some formatting issues… I can see how talking to Dr. Collins could raise your anxiety. Usually Mark talks to him… Though if I’m in the right frame of mind, I find that I can too. We’ll probably be talking to him more as this pregnancy progresses.

      I agree they should focus more attention on the placenta and the cord… It totally makes sense, since, you know, these things are also needed to keep the baby alive. The medical profession could do better, I believe.

      It sucks that we’ll never have all the answers about our children. I too wonder if anything would have been seen on an NST… Like Lydie, I have reason to believe Matthew died really fast, but if I’d had frequent NSTs might someone have seen something? No one will ever know…

      And yes, a little meet up would be so much fun! If you’re ever in the area, please let us know!!

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