My treatment plan

I’ve been pretty neglectful of this blog, but I wanted to share some details of the treatment plan for my current pregnancy, particularly for other sufferers of MPFD/MFI/VUE/CHI who may come across these writings.

As a refresher, the issue in Luke’s pregnancy was a condition known variously as massive perivillous fibrin deposition, maternal floor infarction, chronic hystiocitic intervillositis, and villitis of unknown etiology. Essentially, for some reason my immune system was able to recognize his placenta where normally it would be “invisible.” His placenta was also expressing something incompatible to my immune system, which consequently attacked the spaces in between the villi, the fingerlike projections of the placenta that are responsible for keeping blood flowing in the placenta. (In cases of villitis, the immune system attacks the villi themselves, but in my case immune cells were found between the villi, hence the intervillositis diagnosis.) As a result, massive clots built up in the placenta (AKA massive perivillous fibrin deposition) and by the time Luke was born, the placenta was in the 0.01 percentile, meaning it was smaller than 99.99 placentas of the same gestational age.

MPFD et al. is characterized in medical journals as incredibly rare and poorly understood. It’s not understood why the placenta isn’t being kept invisible or what genetic factors make the placenta and immune system incompatible—i.e., a simple blood test from Mom & Dad & baby won’t predict whether the doomed combination is present (the placenta comes from paternal DNA, and interestingly, there is a significant history of stillbirth on my husband’s side of the family, for which we don’t know if there is any association). MPFD is said to have a high chance of recurrence (I’ve seen as high as 67 percent), but in truth the condition is so little studied that the actual percentage of recurrence is basically unknown. I belong to a couple of different support groups for MPFD and I’ve met women who’ve lost multiple pregnancies to the condition, including miscarriages, women who’ve had only one loss (often sandwiched in between successful pregnancies), and everywhere in between. There has been some development of a therapy that would suppress the immune system response, but it’s not really available in the U.S., and while it has shown good early results, there hasn’t been enough research to validate it as the treatment of choice. As a result, most of the treatment focuses on treating the clotting that could arise from an immune system response, although some women opt to go on no treatment at all, since the clotting treatments haven’t always proven successful either.

In my case, I found out through testing after Luke’s death that I have a common copy of a mutation in the MTHFR gene, which aids in clotting prevention. Something like 75 percent of the population has this mutation. But given the MPFD diagnosis and this additional information, I decided with my doctors and Dr. Harvey Kliman, a placental pathologist at Yale, to begin taking baby aspirin (81 mg daily) as soon as I had a positive pregnancy test. At around 10 weeks I began seeing a maternal fetal medicine specialist, who also prescribed a prenatal containing folate, as well as additional folate, since those with the MTHFR mutation are unable to properly process folic acid, which is contained in most “regular” prenatal vitamins.

I also had clotting tests redone at around 10 weeks, since some clotting disorders can arise only during pregnancy, and was indeed found to have a deficiency in the Protein S clotting factor. Thus I began a daily self injection of enoxaparin, the generic version of Lovenox, a blood thinner similar to heparin. I started at a dose of 40 mg/ml and was retested periodically to make sure the levels were still high enough in my blood, since enoxaparin is a weight-based medication. At 29 weeks, I indeed had to increase the dose to 60 mg/ml. At 33 weeks, I was retested and remained on the 60 mg/ml dose. I will come off the enoxaparin 24 hours before scheduled induction at 37 weeks, and then I’ll need to go back on it for about a month after delivery so that I myself do not develop clots.

For monitoring, I did a bunch of genetic testing at around 11 weeks (through which we learned the gender), the first growth scan at 18 weeks, and an ultrasound every 3 weeks thereafter until about 24 weeks, at which point I switched to biweekly scans. At 28 weeks we began monitoring blood flow to the baby by measuring Dopplers, and we also began biophysical profiles. All of the scans are done at the MFM’s office, since they have much more powerful machines than my regular OB’s. At 32 weeks I also started weekly nonstress tests at my doctor’s. At 34 weeks the BPPs will increase to twice a week.

I started regular kick counts at 24-25 weeks, earlier than what is medically recommended, but what I needed to do for my own sanity. I’ll write more about that in future posts—I have a lot to say on the matter. Since 28 weeks I have been to the labor and delivery unit at the hospital five times for concerns over possible decrease in fetal movement. So far, each time, we’ve passed the NST and BPP with no problems and checked out within two hours.

Although the baby’s growth, Dopplers, NSTs, and BPPs have all come out looking great at every scan, we still have no way of knowing whether the placenta will start to fail in the last few weeks. We have a lot of information on this pregnancy, but we don’t have the information from Luke’s pregnancy to compare it with, since he was on the routine monitoring for “low-risk” pregnancies, which included a mere two ultrasounds and regular measurements of fundal height and heart rate. Luke’s last ultrasound was at 32 weeks and everything appeared fine, and while we can never be sure whether his condition was present from the very beginning of his pregnancy and may have been detected with more intense monitoring, we do know something went catastrophically wrong between 32 and 37 weeks.

Consequently, at the advice of my MFM, just before 33 weeks, I had two doses of steroids (betamethasone, AKA CElestone) to aid in the baby’s lung maturity should I need to deliver before 37 weeks. Unfortunately, one of the possible side effects is decreased fetal movement, which I did indeed experience, triggering a hefty amount of PTSD and sending me on a late-night trip to L&D within eight hours of receiving the second shot. He performed beautifully on his NST and BPP and I was sent home to monitor movements and see if they picked back up, which thankfully they did.

To sum up, my treatment plan consists of:

  • Baby aspirin, 81 mg daily, taken at night (stopping at 36 weeks)
  • Self-administered injection of enoxaparin, 60 mg/ml, once daily (stopping 24 hours prior to delivery and resuming 24 hours after delivery, for one month)
  • Vitamed MD (prenatal with folate)
  • Metanx (extra folate), 1 pill twice daily
  • Other supplements (DHA, Vitamin D, probiotics)
  • 2 rounds of steroid (betamethasone/Celestone) administered 24 hours apart to aid in lung maturity in case of delivery before 37 weeks
  • Regular growth scans, increasing to twice weekly at 24 weeks (at my insistence)
  • Biweekly Doppler measurements and BPPs at 28 weeks (in addition to growth scans)
  • Weekly NSTs at 32 weeks
  • Twice-weekly BPPs and Doppler measurements at 34 weeks
  • Intense monitoring of fetal movement (AKA kick counts all day, every day)
  • Acupuncture and psychotherapy

I wish I could say something sarcastic or witty or wry at some point here, but the truth is that all of this has been as overwhelming and daunting as it sounds, and I’m basically spent at this point. Which is why, when people ask me how I am feeling, I wish they would ask me how I am doing, because, while it seems trivial, that phrasing acknowledges an understanding on the part of the questioner that this is no normal pregnancy in which physical discomfort is the biggest complaint, and that crippling fear and anxiety are the main beasts, to be wrestled daily. So there you have it.

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19 thoughts on “My treatment plan

  1. Soooo…did not know lovenox was weight based. Do you have any info on this so I can ask my MFM to recheck me? I’ve asked multiple times to be checked again make sure the dose of 40 is working (protein s same as you, but I think you knew that) and she says there is no way to tell?

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    • Hmmmm … Your doctor should be able to write a requisition to have your heparin anti-Xa levels tested. You can get this done at any Lab Corp or similar labwork facility. It’s a simple blood draw and the results come back in 2-3 days. You are looking for a number that is in the prophylactic range as opposed to the therapeutic range (at least, I presume, since you yourself have not had any nonpregnancy-related clotting issues). I’m not sure why your doctor would say that? I kind of already suspected I would have to go up on my dosage because the bruising had really tapered off toward the end of the second trimester. Not sure if you’ve had bruising with your shots but that may be an indicator.

      Here’s something I found on this — let me know if this helps:

      https://labtestsonline.org/understanding/analytes/heparin/tab/test/

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  2. Wow. Thank you for sharing this. There are so few personal perspectives on mpfd, and the ones I have found haven’t offered much hope. I am 31 weeks along, and have a similar treatment plan. I lost my daughter at 27 weeks in 2015 due to mpfd. I am switching to two shots a day of a blood thinner that leaves the system faster? At around 33 weeks. I don’t think I understand my treatment as well as you do yours. It’s so that they can stop the blood thinners if needed without the danger of my blood being too thin to deliver… If that makes any sense. I haven’t heard about having to go back on the shots for a while after delivery or the weight changing the dosage thing. I’ll have to ask my doctor about that, so thank you. I am also on the medication they give to people with Lupus? For inflammation or something. And I started weekly NSTs at 27 weeks… Which seemed really early to me, but has actually been really nice. We are going to twice a week at 32 weeks. I wish you the best of luck and hope so much this works for both of us! It has been terrifying, and so few people understand. All our testing and ultrasounds have been pretty good too, and I’m so grateful, but it makes others feel like there is no more danger, when I know that anything can happen. My baby is beginning to measure small, so we’ll see how that affects the treatment going forward. I haven’t been offered steroids yet. I think they are waiting to see if the growth slows down further. OK, this is long. But thank you.

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  3. Hang in there, and I’m glad to offer some hope! If you are on Facebook, are you connected with the MPFD groups on there? If not I can send you the links. Alanna is another MPFD sufferer who blogs over at https://anelefunkneverforgets.wordpress.com. She lost Isobel at 39 weeks in 2015 and had her son Theo last year. He’s now 9 months old and doing great. She was on a similar treatment plan and didn’t have any signs of MPFD in Theo’s pregnancy. And there are many other members in the FB groups who have gone on to have successful pregnancies.

    As you probably know, if your baby starts out small, that is one thing, but if growth starts to drop off that is something to watch closely. I would be asking for regular Doppler measurements as blood flow is one of the first things MPFD would affect, I imagine. I would also be asking for regular BPPs as they can give more info than NSTs and the Dopplers can be done at the same time. I would also be constantly monitoring fetal movement and have a really low threshold for going in to get checked.

    The good news is that you are already further along in this pregnancy and you have a good chance at a good prognosis should you need to deliver at any point—and it improves every day. I know someone else who lost her first baby at 26 weeks; this time she ended up delivering around 28 weeks after going in to the hospital when fetal movement dropped off. Seven weeks later and the baby is doing fine!

    Hang in there; this isn’t easy by any stretch but just keep plugging away day after day. I would love to stay posted on how things are going and I am thinking lots of positive thoughts that everything goes smoothly!

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  4. Hi Angela- glad to get an update on your pregnancy. I know how fucking terrifying it is… and all I can say is I hope you keep hanging in there. And check yourself in to L&D when you need reassurance. I know these last few weeks will take a long time but keep doing what you are doing and I hope that baby is here, alive, and in your arms soon. Thinking of you and Luke.

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  5. Best of luck in the last few weeks of your pregnancy, I hope you have a smooth delivery that ends with a healthy happy baby in your arms. I also have this condition and am currently 13 1/2 weeks with a baby girl. As I am sure you know, it is possible to have this condition and end up with a perfectly healthy child. I delivered my son at 39 1/2 weeks and he is a healthy 18 month old. My placenta was sent to pathology when it came out looking very small with lesions on it. It came back positive for Massive Chronic Intervilliositis, we were just very lucky. It turns out he was growth restricted starting around 36 weeks, but luckily he was still within the range of normal whne born (8% in weight). With my current pregnancy, my doctor will be monitoring with ultrasounds and dopplers as necessary and plans to deliver no later than 38 weeks.

    Are you having your alkaline phosphatase tested (ALP – it is a liver enzyme)? In my first pregnancy my blood work showed that it was elevating consistently throughout the pregnancy to very high numbers but they weren’t sure why. Now we know it can be associated with this condition. During this pregnancy, I will also have my bloodwork tested to monitor my ALP levels, and if they are growing, my doctor will assume that the condition is progressing and continue to monitor closely. At 36 weeks my number was around 750 and by delivery, my number was around 1100 (normal is lower than 250). Just figured I would share this information in case you have any future pregnancies and your doctor thinks tracking it could be helpful. There is currently a clinical trial in France on the correspondence between ALP and this condition.

    Sending positive wishes.

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  6. Hi Ashley – thank you so much for your comment! I did not know about the link with APL. I sort of wish I had known about it earlier, as I think it would have helped me a lot to have that monitored. If you have any literature about it, I’d love if you could send that my way. Are you in the Facebook groups? Might be good to share there as well in case you haven’t already.

    Congratulations on your current pregnancy and I wish you the best with it! And I am so glad your son made it here safe and sound with no ill effects. These kinds of stories definitely bring hope for us all. Thank you so much for writing.

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  7. Hi, sorry for the delay in my response. The ALP levels are noted in a few of the major articles, the most comprehensive article here http://www.placentajournal.org/article/S0143-4004(10)00465-0/fulltext . If you search “alkaline phosphatase” it will bring you to that section. The problem is that there isn’t any guide to what is too high. My doctor is using it as another data point, so that if my alkaline phosphatase levels start to rise, he will increase dopplers and ultrasounds to keep a closer eye on what is going on. My number was at 500 at 32 weeks, then plateaued at 750ish from 36-38 weeks and then spiked to 1150 at 39 1/2 weeks – a huge increase in a week and a half. This was also during a time when my son went from 50th percentile at 36 week ultrasound to 8th percentile at birth when delivered at 39 1/2 weeks.

    Best of luck on your pregnancy, I hope you have a safe and speedy delivery with a happy healthy baby in the end.

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  8. Hi,
    I recently lost my beautiful boy at 21 weeks and through testing they determined it was due to chronic histiocytic intervillositis. I’m so devastated as I feel future pregnancies might not be in the cards for us and if they are it’ll be an uphill battle. Your blog has given me some hope. I’m waiting to see a specialist. Fingers crossed that I have success like you. I’m trying to join the Facebook group, but haven’t been added yet. I feel as though I’m obsessed with finding out all I can about this condition so I can try to make a game plan for myself because I know theres not a lot of literature out there.

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    • Hi Kendall, I’m so sorry to hear about the devastating loss of your beautiful son. This condition is incredibly unfair and I wish there were a magic wand, or more precisely a failsafe treatment, to help all of us. Even so, there is still hope. My two living children are proof of that. You will also find many women in the groups that have gone on to have successful pregnancies. If you’re in the states and are able to get your placental slides to Dr. Kliman, I highly recommend speaking with him. Most of the medical professionals I’ve met have never even heard of CHI, but he has and took the time to explain it to us at length. He also does phone consultations if you’re unable to make an in-person trip. I was completely devastated after our diagnosis, but Dr. Kliman gave us hope for the first time in months. I hope this helps. I’m thinking of you and your boy — feel free to email me if you ever have any questions. ❤

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