Not Mild

The Worst Rollercoaster Ride

Posted on Posted in Induction/L&D, Other Diagnoses, Stories

This is Not Mild

By Anna

As you read this story you might notice that the tone I’ve chosen is a little less conventional than most. This is the way I want to share my story: with a dash of humour, curse words, and sarcasm. Grab a glass of wine, unless you are fortunate enough to be pregnant, then (hiding my resentment and in all seriousness) I am happy for you—non-alcoholic wine sucks so enjoy your water, here is the story of my first pregnancy. Synopsis: I was told baby would survive, then not survive, then survive(!), then not survive…so my full story is long. That’s also why I say a drink might be needed…

The Pregnancy Test

You hear these romantic stories of pregnancy announcements—the girl surprising her partner with a specially planned reveal involving a hidden camera and a cute-emotional present, the partner with an awed expression, tears running down their cheeks exclaiming how excited they are for their hopeful future.

That wasn’t me—that wasn’t my pregnancy announcement—that wasn’t my hopeful future.

I often wonder if the way I told my husband about my positive test set the tone for our pregnancy. I was two days late and a nervous wreck when I finally took the at-home pregnancy test. I set a timer on my phone, paced the hallway until I heard the bell, looked at the results…and felt the air being violently sucked out of my lungs. According to this piece of plastic, I was pregnant. I thought, “Do I actually want this? There’s no way I’m ready. But it’s okay, everyone is scared when they have their first. Fuck this, fuck this I’m not ready. Where is Mike—he fixes everything.”

I opened the Find my Friends app and saw my husband was walking home from work. He was on our cross street, actually. I threw on my shoes and ran to him. I ambushed him on the sidewalk by telling him, “A stupid test says I’m pregnant and we need to buy five more tests to confirm.” I realized how incredibly ridiculous I sounded and compared myself to that scene in the movie Juno where Ellen Paige’s character is chugging back Sunny D orange juice and repetitively taking pregnancy tests in a corner store. At the Rexall pharmacy across from our place we negotiated and only bought two more tests. Two tests reading positive. This shit got real.

Revealing the Pregnancy

For our parents we planned legit reveals, so it was cute and special for them—it was exactly what my husband missed out on. The more excited our family got, the crazier I got. I kept thinking things like, “How was this actually happening to me? I’m too young (I was 29 definitely not ‘too young’). I’m not ready. I’m a mess. God, why can’t I just have a drink and chill the fuck out?”

Mike wanted to wait to tell people, which made a whole lot of logical sense. Looking back, I think I blabbed to everyone I knew immediately because I was in disbelief; I thought if I told enough people I would then be okay with my reality. Our entire friend group, pretty much every family member, and my work knew by the time our little blob was 9 weeks along (ya for real, I called our bundle of joy a blob until it could be scientifically referred to as a fetus – dissociation much?). My department manager said something very ominous when I told her I was pregnant and wanted to get this whole maternity leave process going. She said, “Well, let’s wait and see. Anything can happen, so let’s wait until it gets closer.” I swear to god my boss is psychic.

So at this point, I was having emotional issues, now on to the medical issues.

A Flagged Screening

At both 11 weeks and 15 weeks, I went into my local Life Labs and had blood taken for genetic screening (I am terrible with needles. I have to be taken to a special room where I lie down and they watch me so I don’t pass out or cry and make a scene). At 16 weeks, my midwife called me and gave us some news. The results had come back from the lab; I was flagged for low unconjugated estriol. The fear for me with this hormone being ‘low unconjugated’ was that the pregnancy wasn’t viable (meaning we weren’t pregnant) or that it was a marker for a rare disease called Smith Lemli Opits Syndrome (SLOS). This was our first diagnosis scare. Let the Googling and Youtube-ing commence!

Because I was so early in my pregnancy the doctors wanted to wait a couple more weeks until we did scans and tests to confirm/deny anything.

Right here, I have to say I have an amazing support network: my husband, my family, my in-laws, my friends and my work people. Everyone who knew about what was going on just instinctively knew how to be there for us. I am very lucky; I don’t take this lightly especially after hearing how other mothers of loss have gone through this alone. Even though this is shit, I am very lucky and I don’t take that for granted.

The Ultrasound

My husband was just starting his master’s degree at this time; what awful timing, my first scan at the hospital he had mandatory orientation. So my dad went to the appointment with me. Our midwives were optimistic and we were too—Mike didn’t need to miss class because this was an anomaly on a test and everything would be fine.

After an hour of the radiologist scanning my uterus, a Maternal-Fetal Medicine doctor spoke to me alone. She said she was concerned. She showed the images from the scan to other doctors and they all agreed that there was, quote, “an abnormality with the brain and heart.” I had an appointment with the genetics department that afternoon, the MFM doctor was going to look at the images closer and write a report, my husband left school, and as much as I could see that my dad wanted to be there for us – we had to face this on our own – I told him it was ok for him to leave.

Our first termination attempt:

With more information, the geneticists at BC Woman’s Hospital sat us down and laid out the facts to my husband and I. From the scans the doctors saw that the brain wasn’t developing; instead of the two hemispheres, there was just one mass. They also saw an issue with the heart and (to top it off, because bad news always happens in threes) the umbilical cord only had two of the three arteries that it should have. We were given three outcomes.

  1. Stillbirth
  2. Lives up to 1 month
  3. Survives with severe problems

They said we could do an amniocentesis, but I asked ‘what would that change…how could that help us?’ It wouldn’t change the outcome. What was the point? Mike and I both knew our baby wouldn’t survive. We didn’t make up our minds right there in that room but we knew we would be ending this.

We planned my termination when I was to be 18 weeks. I opted for a labour and delivery that way the hospital could do a thorough autopsy. A nurse called me on Tuesday and this procedure was happening on Wednesday.

The plan:

  1. Check in, get my room, get settled with my midwife
  2. The KCL (the Drs insert a needle to end the heartbeat)
  3. Every three hours a pill is inserted into my cervix to induce labour
  4. Eventually, my uterus contracts enough for the baby to pass
  5. I go home, they do an autopsy, we get results, life goes on

Reality:

I have this personality trait, when things are awkward I get over the top. I’m extremely positive, make jokes, make sure everyone is having a good time. As I check in and talk to the doctors, everyone is (oh I can tell) uneasy with how I’m reacting. A super nice French MFM doctor said I had a great smile, then shook her head. We go down for the KCL, I’m making jokes with my husband and my midwife – I even ask the doctor “Is it ok if I laugh during this?” The MFM doctor was so distracted by my ultrasound she barely answered me. I’m about to end my pregnancy and the doctor tells me that the abnormalities she saw earlier are not as apparent and doesn’t feel comfortable ending this pregnancy.

Let me make this clear. I’m on the table. About to stop my baby’s heartbeat when my doctor tells me oh no let’s wait, there’s hope. This is crude but, I’m about to literally kill (no one likes to use this word but here it is) my baby and now they were throwing hope at me? I was completely fucked up. I was shocked/stunned/frozen/outrageously calm. I did that awful amniocentesis. I thought, “Why not – I’m already on the fucking table.”

The First Diagnostic Test

We went to a lake to get out, have fun, and take our minds off of the wait. I was in the water, my husband came running towards me and told me they called and the first test came back negative – that meant the baby wouldn’t be stillborn! It was like a movie. Time was in slow motion. I cried, fell to my knees, I completely forgot about the public crowd around me as my husband held me and I cried tears of joy. I was happy. I was so fucking happy! I allowed myself this happy time before our next ultrasound.

I was 19 weeks and 6 days along when we had our next appointment at BC Woman’s Hospital. During this visit, we were meant to see a fetal cardiologist and a fetal brain specialist. We saw the fetal cardiologist first, he was amazing – he would tell us everything he saw as he was scanning through the ultrasound. I really liked that, I liked knowing what was happening as it was being shown on the screen. He told us there was a hole in the heart, very manageable, could close on its own, they would monitor, not life-threatening. My beautiful husband was so happy, I was just ok. That wasn’t my concern. The brain was my deal breaker, and what the hell was happening with this SLOS from the initial genetics scare. And of course, the fetal brain specialist wasn’t available that day. An experienced MFM doctor came in, did a brain scan and he told us, as a side note mind you, that our baby did not have SLOS. I had to stop him and be like uh… WTF did you just say…? You are telling me…my baby does not have SLOS this disease I have been obsessing with and you choose to tell us as an afterthought!? So ya…we didn’t have SLOS and according to him, ‘if I saw this scan, without knowing your markers, I would send you home.’ What I failed to give serious thought to was this ‘box’ section of the brain that he couldn’t see clearly because of, I quote, “skull interference”, which would turn out to be our demise.

We ignored it. We ignored the fact that he could see this one section and clung on to what he told us about all the other normalcies. I went back to work, we called our friends and family we even found out the sex, I actually called a local radio station (shout out to Vancouver 104.9 fm Fist Pump Fridays – I said my baby wasn’t going to survive but now everything has turned around and great news! Having a baby boy! Hell ya! Nightmare over!) uh uh. We made a follow-up appointment with this fetal brain specialist who couldn’t make the other appointment – because why not. And went on our merry way.

Not Mild (Another Diagnosis)

At 22 weeks we had another ultrasound with a squeamish, awkward MFM fetal brain specialist. She told us that she couldn’t concentrate while doing the scan and speak to us at the same time and that she would have to tell us everything after. This was extremely unsettling. She was so tiny and jumpy and fragile; she made me really lose confidence her. In my mind we were fine, this was a formality. We went through hell and I was going to have a crazy story to tell our son when he was older. I imagined myself saying things like,”Get out of bed! You don’t know the shit I went through to get you here. Now get your ass to school!” Silly stuff. But then we were pulled to a room. A room full of doctors. Doctors who told us they had a diagnosis: Septo-Optic Dysplasia.

Wikipedia: a rare congenital malformation syndrome featuring development of the optic nerve, pituitary gland dysfunction, and absence of the septum pellucidum (midline part of the brain).

Midline: the Drs confirmed no one could see it on the scans, this was not mild.

Pituitary: could not see this. Could be there, could be underdeveloped. This was not mild.

Optic: a gamble. This is not mild.

 

This is not mild. That was repeated to me like every other sentence. This is not mild. This shit is real. Your baby is fucked. This is not mild.

Our Second Termination—The Real Deal

I’m skipping over a lot of other emotional things like tracking how big my baby was getting, food cravings and aversions, the kickings and movements I could feel. This story is already crazy long. I have to cut where I can. But these things happened. This pregnancy was real and normal pregnancy things happened.

At 22 weeks and 5 days, I entered the hospital on a Monday morning and left on a Wednesday afternoon. Every three hours, medicine was inserted into my cervix. I had to take pain medication resulting in eventually having an epidural.

It was 1:30am Wednesday, I woke up from a broken sleep to this excruciating pain.  Beeped for my nurse (btw I have to give a HUGE shout out to all of the nurses at BC Woman’s Hospital – you do such incredible work and I thank you for all that you did for me). I kept joking that this was my practice run for when I have “my real baby” (I have a thing for disassociation). I felt something ‘dump’ in my abdomen; it is a hard thing to describe. It is nothing I have ever felt before. You just know that something is on its way out.

I yelled to the nurses that this was happening—from the time the pain started to the time my baby boy was born was about 45 minutes. My husband and I only looked at each other, holding hands. The baby was taken away behind a curtain as I waited for the placenta to come out. I expected complications with the placenta because of course there would be complications! But to my surprise, that went as it should.

We chose not to see the baby. There were pictures taken which we viewed at a later date. I do not regret our decision.

Life Eight Months Later

It’s been almost eight months since my pregnancy was terminated. I have no regrets. I mourn for our loss. I think about pregnancy/babies all day, every day, and my emotions around the topic vary minute to minute. My husband and I chose to end this pregnancy because it was the right choice for our family. If anyone else has ever had a diagnosis like ours, or has ever had to deal with the ups and downs like we have, I get it and I am here if you need to talk.

This is our story, and thank you for giving me a platform to share it.

 

 

Photo by Mark Asthoff on Unsplash