Intro: 18 Week Loss

danielle913-2 · June 2016

*Also posted in late term loss*

Hi ladies,

On April 29th after waking up to my underwear filled with wetness and brown discharge, I went to the ER who then sent me to L&D. I had been having some light cramping and back pain in the days before but thought it was growing pains. They couldn't find the heartbeat with the doppler but I still didn't worry too much because I knew I had an anterior placenta and it was sometimes hard to find. Even during the ultrasound I still didn't worry because I figured the ultrasound tech wouldn't be able to keep such a straight face if something was seriously wrong. She told me they'd go over everything when I got back upstairs in a relatively cheery manner, so it put me at ease. Which looking back now, I almost feel sorry for myself and my naiveté in that moment. About 30 minutes later the gyno and a nurse walked in and told my husband and I that our baby had passed. I don't think i've ever screamed so loud in my life. I replay that moment over and over in my head. I remember screaming and crying and asking how in the world would we tell our 3 1/2 year old, who was SO excited to become a big sister. It was all she talked about. I could have swore I had been feeling the baby move all week. Even that morning in the waiting room. Which made me feel crazy. The doctor told me i'd have to deliver the baby. I just kept saying "I can't do this." I was in shock. But I did. It only took 3 hours after they inserted the pills for me to deliver our baby. Too quick for me to have an epidural so I felt it all even on the morphine. Worst pain of my life. We were supposed to find out 4 days from then what the sex was. It was a baby boy. My husband looked at him and touched him, but I couldn't do it. They told me that his head was deformed from the process of delivery likely. I don't regret the decision now but I feel like at some point I might. The baby was measuring at 15 1/2 weeks but the doctor feels like he passed away within that week just judging by his appearance. I ended up need an evac D&C to remove some of the placenta that wouldn't come out. I feel like this is all over the place and I'm sorry. Its my first time reliving it all like this and its coming out a little disjointed.

A week later I had my followup with the doctor for an exam and to go over the tons of bloodwork they took. The only thing she was concerned about was the fact that I had the MTHFR gene mutation. She said that likely what happened was a clot formed in the umbilical cord and was cutting off supply to the baby. I sobbed when it seemed we had found the answer. I had been blaming myself, replaying everything I had done in the weeks prior and wondering what it was I did that killed him. A few days later I went to the hospital to get a copy of all the bloodwork so I could go over everything myself. Interestingly, it said that I had a milder form of the mutation, heterozygous a1298c, which doesn't generally present problems in pregnancy. So now I feel like that's not what caused it at all. I also noticed I tested positive on the antinuclear antibodies test and for one of the antibodies for sjogrens syndrome which I had never heard of. I was surprised she didn't mention any of this to me but for one reason or another maybe felt like it wasn't something to be concerned about. I was hoping they tested my thyroid but they didn't. I have a strong family history of hashimoto's disease, including my mom. That's definitely something I want to get tested before I try again because i've always felt I had a lot of the symptoms.

Currently i'm dealing with what I believe is my first period since it happened. It started about 27 days after I delivered. It is extremelyyy heavy and like no period i've ever had before. Going on about a week now. I had only stopped bleeding from the procedure maybe a week before I got it, so I feel like i'll never go back to normal. Its hard to emotionally heal when you have constant physical reminders.

I just feel so sad. Just imagining what he could have been. How excited we all were for him. And just in shock that it happened so late. I even waited til I was 15 weeks to make the big facebook announcement, JUST to be on the safe side. This is the most traumatic thing I have ever experienced and I feel like i'll never be the same. My anxiety is on another level, like i'm always just waiting for the next bad thing to happen. I have a hard time leaving my daughter when I go to work everyday. I just want to keep everyone I love close to me at all times. My daughter asks every few days or so about Dominic. Why does he have to stay with Jesus and can't be home with us? How did he get there? She is so smart for her age but it's still a hard concept to explain. It breaks my heart every time.

Again i'm sorry this is all over the place. I'm still so heartbroken even though it was a month ago. Has anybody else been told they had a MTHFR mutation? Was anybody else's first period after their loss really horrible? For those who had 2nd or 3rd trimester losses, were you able to find out what caused it? Thank you all for any feedback.

roxgibbons · June 2016

I am so sorry for the loss of your son Dominic. I did not have a late term loss (my loss was at 10+2). I found out during a routine OB appt and still there are days I relive the moments leading up to the moment we found out. We were so happy as we were dealing with infertility and finally felt we were on the other side.

My first period after my loss was extremely heavy especially the first three days. In terms of the MTHFR mutation, what has your dr recommended you do for it in the event you want to try for another child in the future?

I'm sorry it was hard telling your daughter and I understand how you feel. I was heartbroken telling the news to my children. They are a lot older (12 and 9) as this is my 2nd marriage but my 9 year old was beyond excited to become a big brother. He doesn't bring it up as much anymore but he did for quite some time initially. We did not get our baby tested even though it was offered to us, but I regret that decision now and wish we had. I was just too devastated at the time.

I am so sorry you are here but this board has been very helpful and there is some great support here. Many hugs to you.

thatlauragirl · June 2016

I am so so very sorry for your loss of Dominic. I'm sitting here crying reading this because a lot of our stories are so similar. We also found our son had passed in utero in the 2nd tri and it was a shock. We're still waiting for pathology reports to come back but we had already received screening results that he likely had T21. I cannot imagine your stress at not knowing for sure what happened and I hope you get some answers.

It feels hopeless, doesn't it? I also feel like "normal" is long gone and I'll never recover. Please know that you're not alone. Vent away here, we are here for you.

Again, I am so very sorry from the bottom of my heart.

lyndam1 · June 2016

I am so sorry for your loss. I have nothing else to add but that. My heart goes out to you and your family. Hang in there.

BrightenMySky · June 2016

I am so sorry for your loss.

Sugargirl1019 · June 2016

Omgsh I am so so sorry. I want to hug you. What a terrible thing.

My mom has MTHFR and although I haven't been tested, I was told to take a baby aspirin daily after I get my next positive pregnancy test, just in case. Check with your doctor though before starting that just to make sure.

rachrobertson · June 2016

I am so sorry for your loss. My 2.5 year old daughter was the only one with me when they discovered my mmc and it has really bothered her. Even a year later she talks about her sister in heaven (we never knew the sex, she just assumes she had a sister). Since your daughter is slightly older, idk if she would have trouble processing the whole idea of losing a baby she never saw, but I have since gone on to have our rainbow baby and that resparked our daughter's talk of our angel baby. I think at that age, they just have trouble comprehending it and now that she has a sibling, she is starting to really grasp what she lost. Whatever you do, do not blame yourself for this. I agree with looking into your thyroid levels and if they come back normal and you plan to try for another baby down the road, they can treat MTHFR during pregnancy, assuming that is the only reasoning they can find for this loss.

danielle913-2 · June 2016

@roxgibbons Thank you so much for your reply, and I am so sorry for your loss as well, especially after your infertility journey. As far as the MTHFR goes, the doctor recommends I take a baby aspirin daily, and likely I would also see a high risk doctor.

danielle913-2 · June 2016

@thatlauragirl Thank you so much, and I am so sorry for your loss! I truly hope you are able to get a definite answer from the pathology report and that it helps with the healing process as impossible as it all seems.

danielle913-2 · June 2016

@lyndam1 Thank you so much

danielle913-2 · June 2016

@BrightenMySky Thank you so much

danielle913-2 · June 2016

@Sugargirl1019 Thank you so much!

Yes my doctor told me I should start on a daily baby aspirin regimen right away so i've been doing that.

danielle913-2 · June 2016

@rachrobertson Thank you so much for your response. I am so sorry for your loss. I can't imagine how hard that was for your daughter to be with you when finding out that horrible news. I am so glad that you got your rainbow baby, that gives me hope

Hopefulmommy1980 · June 2016

I am so sorry for your loss.

Wishilivedinflorida · June 2016

I'm so so sorry for your loss. Sending hugs. Besides aspirin, I believe it is recommended that those with MTHFR take methyl-folate supplements instead of folic acid because they cannot convert the folic acid to the bioavailable form. I wasn't tested, but I switched to methyl-folate just as a preventative measure. I take the Smarty Pants gummy prenatals.

Sugargirl1019 · June 2016

Wishilivedinflorida said:

I'm so so sorry for your loss. Sending hugs. Besides aspirin, I believe it is recommended that those with MTHFR take methyl-folate supplements instead of folic acid because they cannot convert the folic acid to the bioavailable form. I wasn't tested, but I switched to methyl-folate just as a preventative measure. I take the Smarty Pants gummy prenatals.

Yes to this!

danielle913-2 · June 2016

@Hopefulmommy1980 Thank you very much

danielle913-2 · June 2016

@Wishilivedinflorida @Sugargirl1019Thank you very much for the information! I'm definitely going to look into that!!

fiorip · June 2016

As I was reading your story tears just started pouring because I've been exactly where you are, I know it's the physical and emotional pain is indescribable. I've had two second trimester loss.

My first boy passed right after birth at 21.6 weeks, like you I had experienced back pain and light cramping for about 2 days. That morning of August 4th, 2015 I felt the pain getting stronger so I called my husband, he got off work and took me to the hospital, I was admitted but I was already dilating and labor couldn't be stopped. I got transferred to L&D and without any anesthetic I delivered my son, it was the most excruciating pain ever, I couldnt stop crying through the whole process because even though he had a strong heartbeat after being born, he was just too small and had no chance of survival. To say I was devastated is an understatement, I wasn't able to function properly, I quit my job, I wouldn't sleep, I'd spent days and days just crying inconsolably. After 2 cycles we started trying again and after the second cycle trying I was pregnant again. I had so many mixed emotions, I was so worried that it might happen again. I took extreme care of myself, eating right, light exercise, mostly on bed rest, I was prescribed vaginal progesterone until week 13, had ultrasounds every 2 weeks to measure my cervix. I was also prescribed hydroxyprogesterone shots starting on week 16 to avoid another premature labor. Nurse came to my house to administer the first injection, I was 16.4 weeks. I was given the medication around 3:00 pm and at 8:00 pm I felt this gush of water, my membranes ruptured. I was hospitalized for 3 days, baby was hanging on to life but he had all odds against him, he had barely any fluid left. On Monday April 11th, 2016 at 17 weeks, I delivered my son, he wasn't viable and didn't survive.

Let me tell you @danielle913 you are NOT alone, it's been over a month since my last loss and I'm still constantly breaking down in tears, just this morning while doing the dishes I had to stop because I just couldn't hold it together, I'm a flipping mess. And the reason I'm more of a mess is because doctors can't figure out what happened. Both times I had negative vaginal and urine cultures, no infection, both times they evaluated the babies and pathology reports came back as normal, healthy babies, I also had maternity T21 done while pregnant and it came back low risk for everything. I had the nuchal translucency US and they were both normal. My first son even made it to the anatomy scan, I had it done at 20.4 weeks and he was a perfect little boy, he already weighted about a pound and had hair, he had my lips and his fathers fingers and toes.

I was tested for MTHFR mutation and it was not detected. I was also tested for lupus, anti phospholipid, insulin resistance, Von willebrand, anticardiolipin and a bunch of other stuff, all negative. I don't have an incompetent cervix so basically I've just had incredibly bad luck and what happened to me, can happen to anyone for no particular reason.

I got my first period after 6 weeks post miscarriage and it was not only more painful but a lot heavier.

I wish I could tell you that you'll find out for sure why it happened but sometimes there's just no answers. You take it and deal with it and hope for the best next time around.

I'm sorry for the long post, I just relate to you so much and I really hope you can find peace. It hasn't been easy but I've made peace with what has happen to me, I've stopped blaming myself and my body and just accepted the fact that shitty things happen, life is hard and it sucks and nobody deserves things like these, but things happen. I take it one day at a time, some days I'm certain it's time to give up but most other days I just can't wait to hold a baby that's my own in my arms and I won't ever stop trying. I just can't give up. Take your time to heal, hugs.

danielle913-2 · June 2016

Wow thank you so so much for your response @fiorip. I am so incredibly sorry for your losses. Your strength and perseverance is so admirable to me! It is so hard to not get into that head space of "why me? what did I do to deserve this?" but like you said, it can happen to anybody for no particular reason whatsoever, even when doing everything in your power to try and prevent it. I've found it really hard to relate to the people in my life since this has happened. Appreciating their support and sympathy but also feeling really lonely in my grief. Like nobody can really understand the pain unless they've gone through it themselves. I hate that its such a horrible thing that everyone on this board has to relate to each other on, but i've found it incredibly comforting to not feel so alone through all of it. So thank you so much again for sharing your story with me. Praying for continued healing for you!

jdebaie · June 2016

I am so very sorry for your loss. My 2 1/2 year old still says "baby" and points to my belly and it kills me everytime. My thoughts and prayers are with you.

danielle913-2 · June 2016

@jdebaie Thank you so much, and i'm so sorry for your loss as well.

new_ivf · June 2016

Thank you both @danielle913 and @florip for sharing your experiences. I just experienced a mmc 4 days ago (would've been our first baby) and the pain (both physical and emotional) is indescribable.

I am comforted to hear that I am not alone, your stories are full of strength and it gives me support through this terrible time. I hope we find healing and a sense of peace soon.

danielle913-2 · June 2016

@new_ivf I am so so sorry for your loss.. I know that at 4 days out it must still feel so shocking and raw right now. I hope that each day brings a little bit of physical and emotional healing for you.

dubcompanion · June 2016

@danielle913 My heart breaks for you, and I'm so sorry for your loss. Prayers to your and your family during this tough time.

My first period following D&C (1st tri MMC) was 28 days later on the dot, and it was very heavy. Like you, I had only just stopped bleeding from the procedure about a week prior, and it just felt like I was never going to be normal again. I would never heal from the trauma, physically or emotionally. The former did occur, but as we all know, emotionally takes much, much longer with a "two steps forward, one step back" mantra much of the time.

My three subsequent periods were also heavier than what I was used to pre-pregnancy. Last cycle's AF (5 months out) was the first one that seemed normal, in terms of quantity. Sorry for the TMI.. I know each woman and pregnancy is different, but I just wanted to share so you knew you weren't alone.

danielle913-2 · June 2016

@dubcompanion Thank you so much for your reply, and I am so sorry for your loss. It does help to know that your experience has been similar.

szwill86 · June 2016

@danielle913 I am so sorry for your loss of Dominic. I can relate to your experience- I just lost my little boy at 17 weeks 3 days on May 19th and it would have been our first child. I had to give birth as well since my placenta already separated and I was bleeding immensely, but did not need a D&E/C. Due to wonky first tri screen levels, I had a CVS procedure at 13 wks which came back with no chromosomal abnormalities and I was not a genetic carrier for anything so I can't speak to the MTHFR. I had an anterior placenta too and that was part of my issue- they sent the placenta to pathology after birth and found a huge hemorrhage that would not have been seen on the ultrasound. I had two bouts with bleeding at 16 wks (still saw the heartbeat) and 17 wks (didn't go in for an ultrasound) which ultimately were precursors for my miscarriage. I just stopped bleeding a few days ago (so three weeks after) so I have not had my first period yet.

I had a virus panel of bloodwork done which came back negative for everything and my dr wants me to wait until 12 wks after to get the clotting panel done but believes due to my weird hormone levels at all my screenings and the hemorrhage, this was just a one time thing that we were unlucky to experience and should not effect subsequent pregnancies. We were just that 1 in whatever number chance statistic that everyone hopes not to be.

The emotional healing is very tough but just remember- there is no right or wrong way to grieve nor is there a timeline for when you should be "okay." I have my good days and bad days as I'm sure you do. My immediate family and husband have been a big support to lean on and understand that some days are just tough for the smallest reasons. Just know that all of us have experienced a loss of some sort and are here to support you as best we can!

danielle913-2 · June 2016

@szwill86 Thank you so much for your response and I am so sorry for your loss of your baby boy as well. It really sucks to be on the bad side of statistics that nobody wants to be on. You never feel like you'll be part of the 2-5% that loses a baby in the 2nd trimester and its a tragedy that anybody at all has to go through that. I am so glad that your doctor feels this was a one time thing and that your future pregnancies should not be effected. Prayers and hugs to you

spartygirl95 · June 2016

danielle913 -> my heart is breaking for you! I'm so sorry for your loss of your sweet Dominic. I'm so glad you reached out and have received such amazing responses from so many caring women!

Here is a link to some articles and a link to additional resources that I pray will help as well. I'm praying for you and your family!

fiorip · June 2016

@new_ivf thank you for your words. I'm very sorry for your loss and pray you find peace and healing. Hugs.

fiorip · June 2016

@danielle913 thank you so much. I'll continue to pray for you and everyone here ❤️

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