March 2019 Moms
keikilove
member
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*TW* Goodbye, Reason, & Questions
keikilove
member
Hello friends,
I want to warn that this post is potentially upsetting (and it's long) so please skip or read with caution. I came back to post in an effort to help anyone in the future who may run into the same problems I experienced during my pregnancy. This post shares bad news and is not appropriate for some pregnant women, so please please skip completely if you're sensitive. Feel free to private message me if you think I should post in a different place or edit this so it's not upsetting to the group.
My last post in this group was after some scary doctors' visits and I said I would share an update when I could in the future. This update might help you or someone you know with some info I was completely unaware of before this recent experience.
Not sure if anyone recalls, but I felt continuously sick and was suffering from pretty low blood pressure, dizziness, nausea, killer non-stop headaches, and extreme fatigue. I felt that I was sleeping too much. Even in my sleep I felt nauseous but could never throw up. My OB (a new one in the practice who I didn't vibe with) dismissed all my symptoms as "normal second trimester issues". So, I went to my regular Primary Care Physician repeatedly because I felt so ill; she listened to me when I said I'd had two other healthy children and this pregnancy felt much worse than the others--it just didn't feel right. My blood pressure had dropped to 90/60 for one month straight. The last time I saw my PCP my blood pressure dropped way down into the 80s over 50s; she put me on Disability to try to get to the bottom of my illness. I was so relieved because I work in a nasty stressful toxic work environment and hadn't told anyone at work about the pregnancy. I was eager to just de-stress and nurture my pregnancy going forward.
You may also recall that I had no idea why, but I was blessed to be able to feel my baby girl move from very early in the pregnancy. The night before my anatomy scan she kicked 3 times and I could finally see it from the outside. I thought, "Oh good! Now my husband will be able to bond with her since he will be able to feel and see her movements. I've been bonding with her since she began moving around 10-12 weeks..." That night I fell asleep on the couch. I was so deeply exhausted that I couldn't move. My brain kept telling me to get off the couch, to get off my back, but I couldn't move, I was just too tired. I went upstairs around 2 am. The next day I saw my MFM specialist, who said there was no heartbeat. We were stunned. He said this was very very unusual so far along in pregnancy, but sometimes happens and there is usually no answer for why. He also said it looked to be very recent because the baby appeared to be perfect. I had to be induced and delivered our daughter at 18 weeks. She was absolutely perfect with beautiful little fingers and toes. We got handprints and footprints and said goodbye. This sounds horrible, but as soon as the delivery was over my body felt as if I had just gotten over being poisoned. I felt immensely better than I had in 4 months. This sensation made me wonder if my body had been fighting off the pregnancy the whole time...I had be4en very sick through my first two pregnancies as well, but never this sick. it made me wonder if my body had tried to fight off those pregnancies as well... I wondered if sleeping on my back had caused this terribly sad ending, or if my cured Lyme disease had really come creeping back, or if my lack of exercise had caused it, and on and on....
REASON: The autopsy showed nothing abnormal, nor did the blood tests. I wanted/NEEDED answers, it was so devastating, so I pored over all my past health records that I'd saved in a folder and was STUNNED to see some notes in my very old Lyme blood test paperwork from years ago: "Patient has gene mutations of MTHFR and PAI-1, both of which can lead to blood clots and may affect pregnancy." I don't even remember ever reading these results when I was dealing with Lyme! Since finding these results in my paperwork I have joined several groups on FB for women with these mutations who have experienced losses. While doctors will say these issues are very very rare, there are thousands of women with the same gene mutations who are experiencing repeat early miscarriages, late losses, and stillbirth. The simple solutions (that aren't foolproof) appear to be baby aspirin, fish oil, folate instead of folic acid, and Lovenox injections to diminish the risk of blood clots. There also seems to be a strange pattern for many of us: women are able to have one or two healthy babies and then begin experiencing late losses/stillbirths thereafter (as is my case).
The frustrating thing is that, while everyone seems at least somewhat familiar with the common MTHFR mutations, none of the OBs in the group I go to are familiar with the PAI-1 mutation; my MFM specialist and his geneticist aren't familiar; I've seen a hematologist who isn't familiar; I've seen a naturopathic doctor who isn't familiar; and the fertility specialist I've met with has dismissed the mutations as insignificant and not to blame for my late loss. However, thankfully, they're all willing to learn and support me in pursuing another healthy pregnancy. The hematologist is willing to prescribe Lovenox if I'm lucky to conceive again. The trend I've found in my online groups is that you must push and advocate for what you need if the next pregnancy is going to be successful. Fingers crossed that all will go well in the future...
QUESTIONS: I have pored over this Bump website and a couple of others online to learn from others who have the mutations. There aren't many resources on TheBump, but there is a very informative group called the "Lovely Lovenox Ladies" on BabyCenter (that site is actually good for something!). Unfortunately, the Bump March 2019 Moms "High-Risk Thread" got started just after I had my loss. I see that several of you have had late losses or stillbirths, and I see some of you are on Lovenox. Do you feel willing to share why you are on Lovenox or baby aspirin? Do you have any more helpful info to add to my post? Please, if you can, share here or in private message if you have any help to offer to me/others who may come across this post. There is so little out there to point us in the right direction. Thanks in advance for your love and support.
I will be praying for all of you and wishing you all the best as you continue your beautiful pregnancies. I am going to head over to the TTCAL group and see what I can learn about my next adventure. Please spread the word about the PAI-1 mutation, and I truly hope that this post is helpful to someone (instead of worrisome to anyone who chose to read it). Blessings to all of you and your babies!
I want to warn that this post is potentially upsetting (and it's long) so please skip or read with caution. I came back to post in an effort to help anyone in the future who may run into the same problems I experienced during my pregnancy. This post shares bad news and is not appropriate for some pregnant women, so please please skip completely if you're sensitive. Feel free to private message me if you think I should post in a different place or edit this so it's not upsetting to the group.
My last post in this group was after some scary doctors' visits and I said I would share an update when I could in the future. This update might help you or someone you know with some info I was completely unaware of before this recent experience.
Not sure if anyone recalls, but I felt continuously sick and was suffering from pretty low blood pressure, dizziness, nausea, killer non-stop headaches, and extreme fatigue. I felt that I was sleeping too much. Even in my sleep I felt nauseous but could never throw up. My OB (a new one in the practice who I didn't vibe with) dismissed all my symptoms as "normal second trimester issues". So, I went to my regular Primary Care Physician repeatedly because I felt so ill; she listened to me when I said I'd had two other healthy children and this pregnancy felt much worse than the others--it just didn't feel right. My blood pressure had dropped to 90/60 for one month straight. The last time I saw my PCP my blood pressure dropped way down into the 80s over 50s; she put me on Disability to try to get to the bottom of my illness. I was so relieved because I work in a nasty stressful toxic work environment and hadn't told anyone at work about the pregnancy. I was eager to just de-stress and nurture my pregnancy going forward.
You may also recall that I had no idea why, but I was blessed to be able to feel my baby girl move from very early in the pregnancy. The night before my anatomy scan she kicked 3 times and I could finally see it from the outside. I thought, "Oh good! Now my husband will be able to bond with her since he will be able to feel and see her movements. I've been bonding with her since she began moving around 10-12 weeks..." That night I fell asleep on the couch. I was so deeply exhausted that I couldn't move. My brain kept telling me to get off the couch, to get off my back, but I couldn't move, I was just too tired. I went upstairs around 2 am. The next day I saw my MFM specialist, who said there was no heartbeat. We were stunned. He said this was very very unusual so far along in pregnancy, but sometimes happens and there is usually no answer for why. He also said it looked to be very recent because the baby appeared to be perfect. I had to be induced and delivered our daughter at 18 weeks. She was absolutely perfect with beautiful little fingers and toes. We got handprints and footprints and said goodbye. This sounds horrible, but as soon as the delivery was over my body felt as if I had just gotten over being poisoned. I felt immensely better than I had in 4 months. This sensation made me wonder if my body had been fighting off the pregnancy the whole time...I had be4en very sick through my first two pregnancies as well, but never this sick. it made me wonder if my body had tried to fight off those pregnancies as well... I wondered if sleeping on my back had caused this terribly sad ending, or if my cured Lyme disease had really come creeping back, or if my lack of exercise had caused it, and on and on....
REASON: The autopsy showed nothing abnormal, nor did the blood tests. I wanted/NEEDED answers, it was so devastating, so I pored over all my past health records that I'd saved in a folder and was STUNNED to see some notes in my very old Lyme blood test paperwork from years ago: "Patient has gene mutations of MTHFR and PAI-1, both of which can lead to blood clots and may affect pregnancy." I don't even remember ever reading these results when I was dealing with Lyme! Since finding these results in my paperwork I have joined several groups on FB for women with these mutations who have experienced losses. While doctors will say these issues are very very rare, there are thousands of women with the same gene mutations who are experiencing repeat early miscarriages, late losses, and stillbirth. The simple solutions (that aren't foolproof) appear to be baby aspirin, fish oil, folate instead of folic acid, and Lovenox injections to diminish the risk of blood clots. There also seems to be a strange pattern for many of us: women are able to have one or two healthy babies and then begin experiencing late losses/stillbirths thereafter (as is my case).
The frustrating thing is that, while everyone seems at least somewhat familiar with the common MTHFR mutations, none of the OBs in the group I go to are familiar with the PAI-1 mutation; my MFM specialist and his geneticist aren't familiar; I've seen a hematologist who isn't familiar; I've seen a naturopathic doctor who isn't familiar; and the fertility specialist I've met with has dismissed the mutations as insignificant and not to blame for my late loss. However, thankfully, they're all willing to learn and support me in pursuing another healthy pregnancy. The hematologist is willing to prescribe Lovenox if I'm lucky to conceive again. The trend I've found in my online groups is that you must push and advocate for what you need if the next pregnancy is going to be successful. Fingers crossed that all will go well in the future...
QUESTIONS: I have pored over this Bump website and a couple of others online to learn from others who have the mutations. There aren't many resources on TheBump, but there is a very informative group called the "Lovely Lovenox Ladies" on BabyCenter (that site is actually good for something!). Unfortunately, the Bump March 2019 Moms "High-Risk Thread" got started just after I had my loss. I see that several of you have had late losses or stillbirths, and I see some of you are on Lovenox. Do you feel willing to share why you are on Lovenox or baby aspirin? Do you have any more helpful info to add to my post? Please, if you can, share here or in private message if you have any help to offer to me/others who may come across this post. There is so little out there to point us in the right direction. Thanks in advance for your love and support.
I will be praying for all of you and wishing you all the best as you continue your beautiful pregnancies. I am going to head over to the TTCAL group and see what I can learn about my next adventure. Please spread the word about the PAI-1 mutation, and I truly hope that this post is helpful to someone (instead of worrisome to anyone who chose to read it). Blessings to all of you and your babies!
Re: *TW* Goodbye, Reason, & Questions
I will start off with saying I known nothing of the mutations. I lost Lochlan at 20 weeks due to a clot in his umbilical cord. I do not clot very well to begin with, so I was surprised by this. Because of the clot my mfm Dr put me on a daily baby aspirin.
Sept '11-April '13 ~ Testing, failed multiple MFI treatments, saving & TONS of praying
January 2014 ~ IVF/ICSI & PGS ~ no response to stims ~ converted to IUI ~ BFN
February 2014 ~ On to donor embyros ~ 5 blasts!!!
March 2014 ~ FET #1 ~ Transferred 2 blasts ~ BFN
July 2014 ~ Kliman's mock cycle with endometrial function test
Sample too small for EFT, HE slide showed immature cells
New protocol planned, saving for another biopsy for EFT
January 2015 ~ Considering adoption options
April 2015 ~ Privately arranged adoption of planned pregnancy
DD#1 ~ Lillyana Violet Marie born 6/15/16, Finalized adoption 12/20/16
July 13, 2018 ~ BFP....WTF?!?!
7/16 Beta #1 ~ 466...7/18 Beta #2 ~ 1,077...7/23 Beta #3 ~ 5,291
7/23 US #1 ~ 1 gestational sac seen and yolk sac
7/30 US #2 and 1st OB appt ~ 1 perfectly round gestational sac, 1 perfect yolk sac and 1 teeny tiny heart beat seen!!!
of information for you but I am deeply sorry for your loss. I’ll be thinking of and praying for you moving forward. I’m very proud of you for being an advocate and looking up answers for your daughter, your family, yourself, and for others! I hope you can find more information and answers as you move forward.
Married: 2016
BFP #1 4/23/18, blighted ovum 5/29/18
BFP#2 7/14/18, DS 4/5/19
I have a friend that has recently had several losses with no real explanation that I intend to share this with. I hope that it gives you hope that your experience could go on to spread information and help others. Thank you for sharing it. I’m sure it was not easy. Take care.
[spoiler=TW in signature]
Me: 36, DH 37.
August 2014- 6w MMC
July 2015- CP
PCOS, plus some medical issues that make me high risk.
Our rainbow babies are due 3/21!!!!!
[/spoiler]
As you have already begun learning, clotting disorders are not consistently understood across providers and sometimes they are outright dismissive that they play a role in pregnancy loss, so it’s important you keep advocating for yourself. A few of my doctors have shown/shared skepticism about lovenox (including one who nearly refused to write the script until I *made* him) but I ignore them and listen to my specialists.
I don’t have a specific gene mutation or named disorder like APS but my hematologist suggested there are others out there yet to be identified which might be what I have. Best case scenario is my protein s deficiency is just my body not doing exactly what it is supposed to. He prescribed lovenox & baby aspirin somewhat as a “let’s try it” protocol due to my loss history. He said it takes someone with a less than 30% chance of success to over 80% chance of successful pregnancy.
If/when you do start lovenox, I will warn you that the medicine stings and bruises are very common (sometimes small, sometimes giant). I was afraid of the needle in the belly aspect, but happily that was a non-issue because the needle is very small and short. Icing before the injection makes the sting unnoticeable and some people say helps with the bruises.
Again, I’m so sorry this happened to you and hope you are able to find providers you feel comfortable and cared for with in the future. Praying for you & your family’s healing and peace.
Married: 2012
BFP #1 Sept 2014, MMC Dec 2014 | BFP #2 May 2015, DD Jan 2016
I am a licensed acupuncturist and my first boss (who had 20 years of experience) would always give people methylated b12 if they had the mthfr mutation, because individuals with the mutation often have b12 deficiency - - they can't synthesize it easily from food. B12 is important for nerve, vascular, digestive and immune functions.
I hope that after you take time to heal you are able to go on and have your third baby! And any more that you want, too! ❤
Out of curiosity, did your doctor tell you which MTHFR mutation you have or how many copies? MTHFR runs in my family, I have one copy of the A1298C mutation and my sister has two copies (which means my parents each have at least one copy of the same mutation). When I found out (which was right before I got pregnant with my first), I did a bunch of research and it seems that the most significant problems happen when you have either one copy of the A1298C and one copy of the C677T mutation, or when you have two copies of the C677T mutation. I found one article from the NIH that said that my single mutation was much less of a risk but that there just wasn't enough research out there to say anything for certain. I'm taking methylated folate and B12 instead of folic acid, just in case, but there's always something in the back of my head wondering if I should be doing more. None of my doctors seem to know anything about MTHFR so I'm kind of flying blind and hoping for the best.
June 2016 - CP
2017 - Medicated Cycles & IUI's
IVF w/ PGS - January 2018
FET #1 - April 2018 - BFN
ERA Cycle May / June 2018
ERA Biopsy June 2018 ~ Results: receptive (no change)
FET #2 - July 2018 - BFP
U/S #1 7wk1d - HB 144 U/S #2 9w1d HB 166
Anatomy Scan 1st 11/2/18 2nd AS 11/19
EDD March 28, 2019
Baby Girl born 3/26/19
George (3)
I'm pretty stoic so I posted this once I thought I maybe could be helpful, but after posting I had to take a break from the app because it is still emotional. I truly broke down a few times in the early weeks, especially on the day we picked up her ashes in a beautiful tiny urn, it all felt so final then. I flirted with going into a depression, but having a mission to find answers helped keep me above those dark depths. Now the goal to conceive again is imminent because I am older and my AMH levels are declining with age. Life isn't life without a few challenges....
@Kenneylynn3 Thank you for asking if we named her. We did: her name is Keiki, which means "child" in Hawaiian, and implies "beloved" or "precious" child. We gave her my mom's maiden name as a middle name. My little one asks about seeing Baby Keiki in heaven, which is both sweet & sad. I'm so sorry for your loss of Lochlan too. I am glad to read that you're finally feeling somewhat better as you get further along in this pregnancy.
@violetmarie61516 Thanks so much for the doctor reference! I hope all is well with you and your family.
@meggyme Thanks for sharing the info with your friend. I hope she finds it helpful.
@3rdtime_charmed Thanks for sharing your friend's experience with MTHFR--it gives me hope!
@mamakate1616 It is very encouraging to hear the words of your hematologist, thanks for the tips on Lovenox too.
@gowenc Please don't be scared but my MTHFR mutation is the same as yours: heterozygous for A1298C. I think I experienced problems because of my combo with the PAI-1 mutation. My regular PCP doc says to add fish oil to the baby aspirin/folate regimen for best outcome with MTHFR. You are right that the mutation we both have is the least concerning, but fish oil can't hurt.
@Lbloom Thank you so much and I'm sorry for your loss. I can't imagine what it's like to not have an explanation for your precious daughter's passing. You are strong to move forward and I wish you all the best for this next bundle of joy.
@kristimh80 Thank you for offering your support. Like you, I can't believe it was in my health history! Shoulda woulda coulda will drive me crazy so I can only look ahead... I'm so glad you got your healthy pregnancy after your challenges and may be in touch when I need a friend.
Thank you again to everyone for your response, positive thoughts for my family, and your prayers. I believe in the power of positivity and you are helping to keep my spirits up. Aloha.