Sunday, 8 March 2015

Preparing for the Worst Case Scenario

It is often estimated that patients only absorb a small amount of the spoken transaction with their health care providers. When I met with the perinatologist to discuss my placenta, I felt that I was not an exception. Although I am fluent in his language, I was a bit overwhelmed at that moment and I left the office with the feeling that I didn't have the full picture on our situation. Acknowledging that I have a lot of unfair advantages, I would wait until I had access to read my own report. This perinatology office is generally pretty slow to return normal reports. The turn-around time is about 1-2 weeks and I've come to accept that the longer it takes them to send a report, the more likely it is to be normal. The day after my scan, I received an email message confirming that my report was received and scanned into my electronic health record.

I had Co-worker print a copy for me. The details of my placenta read: anterior, total previa, grade 1, with placental lake. A placenta lake (also called lacunae) is a black sonolucent space within the placeta and can give the placenta a Swiss cheese like appearance. It indicates that there is a loss of placental homogeneity. The final comments noted; There is a COMPLETE ANTERIOR PLACENTA PREVIA. There are lacunae noted within the placenta, but without turbulent flow. A retroplacental clear space is visualised. Placental lacunae with placenta previa is associated with an increased risk of placenta accreta, but there is no definite evidence of placenta accreta on today's ultrasound. As I reviewed the report, my gut instinct told me that my previa was probably not going to resolve and the possibility of an accreta was more of a threat than I had previously anticipated. I showed the report to a colleague ,"Ugh" she reacted while making a face. Then she realised it was mine. "Oh, I'm so sorry!" she quickly recovered. No need. I wanted an honest response. She agreed it is a bit of an ominous prognosis.

I had my first visit with my Lead Physician where I was her patient and she was my Obstetrician. She had called to the perinatologist to discuss my case. Firstly, they both observed the irony and noted that Ob/Gyn providers just seem to be at a higher risk for weird and unusual complications. He really identified two separate concerns, the location of the placenta and the potential for an accreta. Even if my placenta moves, I could still have an accreta. He admitted that he has seen cases where previously noted lacunae or lakes resolve, but it didn't seem to be too often. The take home message was clear; I should prepare for the possibility and consequences of a placenta accreta. Something I more or less had already been doing.

As I've described the situation with a few non-medical people, I've been asked, "So what does that mean? You'll have to have a C/section?" The little voice inside my head wants to laugh a little and respond with oh, if only it were just a routine Caesarean delivery... The management for a placenta accreta is to perform a Caesarean hysterectomy. As the placenta is completely adherent to the uterine muscular wall, it can not be easily removed without risking massive hemorrhaging, so it is best just to remove the entire uterus. It is a very intricate and risky surgical procedure. My birth plan would look like this:
  • A course of bethmethasone steroids 48 hours before scheduled delivery at 34 weeks gestation
  • Pre-operative discussion of the potential intraoperative complications, including hemorrhage, need for transfusion, injury to bladder or bowel. Some of which may be life-threatening.
  • Delivery in the Main Operating Room where fluroscopy is available.
  • Two large bore IV catheters in place
  • 3-way Foley Catheter and ureteral stents to help assess the integrity of the urinary tract as needed
  • A sheath in the femoral artery to allow for interventional radiology to perform uterine artery embolisation to control bleeding during surgery
  • Type specific blood products and clotting factors available at the time of delivery
  • Experienced anesthesiologists and nursing staff. 
  • A Gyn-Oncologist is often called to assist, not because of any cancerous potential, but for their excellent surgical skills
  • Neonatology attendance
  • An ICU bed should be available for postoperative care
  • A scheduled delivery is optimal in order to coordinate all necessary personnel and equipment, and it is associated with less intraoperative blood loss. However, many patients will have a bleeding episode or go into preterm labour, necessitating an emergency delivery. 
I'm choosing not to focus on some of the life threatening consequences until I actually have to cross that bridge if I come to it. Rather, I'm preparing myself for the possibility of losing my uterus. In a way, it's even slightly ironic as I only wanted to have one child. All my reasons for only wanting one child are still intact. It just would be frustrating not to have that option any more. Medically, I know it's a straight forward decision. I reviewed the literature; in cases where a placenta accreta has been disturbed and is hemorrhaging, conservative measures are rarely effective and endanger the patient by delaying a hysterectomy. During the delay, massive hemorrhage can lead to a downward spiral of hypoperfusion of all organ systems, hypothermia, disseminated intravascular coagulopathy and metabolic acidosis... I already know that my uterus is useless. Even when uterine conservation can be preserved, reproductive outcomes are poor. Many patients have residual intrauterine synechiae leading to Asherman's Syndrome and they are at a very high risk of a repeat placenta accreta in the even of a subsequent pregnancy. I can't imagine that Dr Somebody that I Used to Know would even recommend transferring any embryos into a surviving uterus. Quite honestly, I would question him ethically if he did. It took us six embryos just to get a good one to stick and that was before we knew my uterus is shit. Perhaps I have found ultimate silver lining to our infertility journey. As we have three remaining embryos, we at least theoretically have the opportunity to try for a second child with a surrogate, even if we don't have the financial resources.

I've been clinging to a few positive aspects that I have in my favour. My placenta is anterior, and anterior previas are more likely to move and less likely to bleed. Cervical shortening is associated with an increased risk for bleeding and mine is a solid 43 mm. So far, my haemoglobin and haemotocrit are in a normal range and I plan to follow closely and proactively correct against anaemia. I have been allowed to exercise with modifications. I stopped running, but have continued swimming and going to Cross-Fit (although I'm not lifting).  Although the threat of pre-eclampsia is still present, my blood pressure has been within normal range. I feel great and I look great, even if the situation with my placenta is not great.

In such a strange way, I feel so fortunate to have this information now. A placenta accreta is most dangerous when it is undiagnosed. I have a lot of time to process the possibility losing my uterus. I've had two patients who needed an emergency postpartum hysterectomy and I can't imagine receiving that news just after giving birth. I was planning to resume using a Mir.ena IUD, not only for contraception so that we wouldn't have the post infertility surprise baby, but for menstrual suppression. After coordinating so many appointments and treatments around my cycle, I don't want to see AF for a long time. I was also considering Nex.planon so that I wouldn't even ovulate and be aware of luteal phase symptoms. As my pregnancy was dated based on my embryo transfer, I can't actually remember the day of my last menstrual period, which may actually be my last menstrual period.

My follow up scan was moved up one week, so I'll know a little sooner if this scenario will become my reality. At this point in time, if we have a take home mom and take home baby, we'll score it as a win. Anything else will be a bonus.

22 comments:

  1. That is a lot of information to process, intellectually and emotionally. I am so sorry you have to deal with this additional stress, but you seem to be handling it really well. I think it is wise to plan for the worst case scenario, though I will be hoping that it doesn't come to that. Hugs and good thoughts for you always.

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  2. Oh my gosh, Jane. I had no idea that you were going through all of this. I'm so sorry but glad your medical background is serving you well to digest all of this. Hoping so much for that win/win! Hugs

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  3. Well ain't that a shit sandwich and a half! Fuck! I'm sorry Jane. I'm hoping for the realistic best case scenario in all of this.

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  4. Holy shit, Jane. That is awful. You're dealing with it really well (I'm attributing that to your British stiff-upper-lipped-ness) but there's no denying that this is completely and totally unfair. You've had to deal with enough, you don't need this on top of it. I guess it's good that you were thinking one and done, but like you said it's not fair to have that option taken away from you. I truly truly hope it doesn't come to this and your placenta moves up and out of the way and behaves itself. I think your uterus may just have taken the asshole prize.

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  5. Oh my goodness- why is it always something?! Why can't we just have the normal pregnancies/births? I'm starting to wonder if those even exist anymore! Ah! Praying for you and baby and that somehow, from here on out, you will fall into all of the best case scenarios with this. XO

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  6. Wow, that is so much stressful information to deal with. I really hope this worst case scenario doesn't come to pass for you!

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  7. Wow, that is so much stressful information to deal with. I really hope this worst case scenario doesn't come to pass for you!

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  8. Yikes. This is stressful to read, and I only understood about half of it. If there's any sort of good in this, it's like you said - you at least have this information and are able to make some sort of plan. Hoping for the best possible outcome for you!

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  9. This is shitty news. I was thinking when reading your post on this that sometimes it stinks to know too much because your mind always jumps to the worst case scenario. Yet, in this case, unfortunately it seems to have worked to your advantage.

    But really, wtf? This seems colossally unfair. I hope that the absolute worst case doesn't come to pass and you can not have another child the way most women do. I'm really sorry that you're dealing with this.

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  10. Ugh. I hate this for you. It's complete bullshit. But you are handling it so well (what else can you do?!). I'll be keeping you and baby in my thought and hoping for the best possible outcome.

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  11. Oh no Jane! You have already had a tough enough road to get here...and now this? I'm sorry that the option to have another child might be taken from you- but it sounds like it is good that you guys know this in advance. I'm wishing for the best case scenario for you!!

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  12. Wow. I am an anesthesiologist and know that the threat to not only your baby but to you personally is very real. I will be following and thinking of you.

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  13. Keeping you in my thoughts always, friend. Hoping for the best case scenario. <3

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  14. It really really bothers me when infertile people are handed more crap to deal with when they finally get pregnant. Its like, PLEASE!! I've been through so much hell to get pregnant, just let the pregnancy be smooth. Can't a really fertile person deal with the bumps that can come? Rant over.
    With that said, I'm really happy you are so smart and totally get what is going on. 43mm is GREAT length. Our gestational carriers was only 1.8 at 20 weeks with twins. She also had threated pre-eclampsia almost the whole time but held on till 36 weeks. I think people who have a had a lot of loss in the infertility land always assume worse casneario too. Hang in there mama, you are doing great and there are a lot of positive things (aka the worse casenario doesn't happen) that could happen too! <3

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  15. How stressful. UGH. Your medical knowledge makes it both easier and harder to handle at the same time, I'd think. You're well-informed and understand how it all works, yet there's also the knowing "too much" that can increase anxiety. I'm nervous for you, but glad there are some positives, and really hoping things go better than expected.

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  16. Phew. This sounds awfully scary. I agree that you are on top of things and seem to be handling this really well - and still, it must be unsettling. I'm hoping the next ultrasound will give you a better prognosis.

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  17. I read this with a lump in my throat. You've already been through so much, why does it have to continue to be hard? I am hoping for the best outcome for you, which is healthy Mama, healthy baby. It sounds like you are in good hands and have a great birth plan. Big hugs!

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  18. woah, you sound remarkably calm. I think I would be freaking the eff out if I was in your shoes! Even if you only want one baby and never want your period again I think there's something so final about losing your uterus. I think you are right to focus on the silver lining that you do still have embryos that theoretically speaking could be used with a surrogate if you ever decided you wanted another baby....you know I bet Myrtle would love to volunteer and for free, am I right??

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  19. Seriously, universe? I'm pretty sure you have been through enough to have this baby. Sorry you are having to go through this. It all sounds very scary. I think it's good you know now so you have time to digest and accept whatever may happen. Not to mention you want to avoid any sort of delivery room surprise. Even though you only plan on having one, that choice shouldn't be taken from you so dramatically. Ugh. Aramis is right- your uterus wins for biggest asshole. I really hope you don't have to face the worst case scenario.

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  20. I don't know if this brings even a modicum of comfort... But I had something similar. At 18 weeks, I was diagnosed with complete anterior placenta previa and a succenturiate lobe. I was put on pelvic rest, but not bed rest. You know the drill... All throughout my pregnancy I felt like something was wrong, I couldn't shake the feeling that I had placenta accreta because my cervix felt weird. I am not a doctor, so what did I know? Besides, the many ultrasounds I had had ruled out accreta. But, surprise! During my c-section, I haemmorrhaged and lost a gallon of blood. I had been right -- I *did* have accreta and also villitis. Go me. After miscarriage, chemical pregnancies, the diagnosis of a genetic disorder which led to us using donor eggs to conceive our daughter, it felt like the last in a series of blows. Always thought I'd have two kids an an oops. There will be no Oops, and perhaps not even a second, even though we have more than enough embryos. I know you don't need to be told it's good that you are armed with information ahead of time. I just wanted you to know that someone (a fellow Brit in the US?) had a similar thing because sometimes it helps to know you're not alone. Most importantly, a caesarean birth -- even a fucking scary one -- is still the birth of your sweet baby and it can still be special.

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  21. Ugh, couldn't agree more with prior comments. Haven't you been through enough? I am really hoping this all works out in the end and the worst case scenario is just that - a scenario that doesn't occur. Thinking of you.

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  22. Oh my goodness! I feel awful for dropping the ball on blogging and commenting now. Jane, this has got to be so overwhelming, even if you didn't want a second child, even if you didn't want your period to return… there's a difference in choosing something and having something taken away from you.

    Going to catch up on everything else now!

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