You think you’re ok. Then…

It has been nearly six months since we ended our last pregnancy. I can’t quite believe it. Yesterday, I messaged a friend to say that I think I have come to accept our situation and have adjusted my expectations. Today, I broke down like a deranged mess in front of a whole toddler gym class when someone asked me how I was.

You see, today is our (latest) baby’s due date.

Today is also the day that I think I have got my period again, after trying so hard to get pregnant last month. This was the first month we have been able to try and get pregnant since we ended our pregnancy. I’ll explain why.

For a few months I had little to no periods, with horrendous abdominal pain. I’d never really experienced period pain before, so I visited a gynaecologist. He wanted to run a few tests to make sure I didn’t have Asherman’s.

We started with a HSG. It’s when a radiologist puts a catheter in your cervix and into your uterus and squirts dye in there that should flow around and show up on a screen. It was at the same hospital that we went to when we ended our pregnancy. That alone was enough to set me off. Then I had to take a pregnancy test. It felt cruel. Then I was back in a hospital gown again. Lying on a table in a brightly lit room again. This time there was no anaesthetic. The pain was excruciating. I honestly can’t remember ever being in so much pain. It was painful because the dye wasn’t going where it was supposed to. It was stuck in the neck of the uterus. I cried so much that day that the radiologist put a note on my report that she thought I needed psychological help. I had Asherman’s.

It was in December last year that I feared I had Asherman’s. I never thought I would be in the same situation again nearly a year later. This time I arrived at a private hospital. I was dressed in a gown again. I was given misoprostol again. I was led into the brightly lit theatre room again. The anaesthetist was there, she held my hand. The operation was a “success” if you put aside the fact I had bad scarring in the neck of my uterus. The gynaecologist said he had divided the scar tissue and we could start trying again immediately. We were so optimistic. It was a rare win for us in the crap of the last two years that we have plodded through.

Now though, as I sit on our couch writing this, I feel like I’ve come down to earth with a thud. We are still on a long road. We’re not even pregnant. If we get pregnant we and our little baby then have 39 weeks to survive, well, 35 if you minus out the first four weeks that you don’t know you’re pregnant. It’s hard to stay positive sometimes.

 

 

 

 

The days after we ended our pregnancy

It has been over three months since I ended my pregnancy. I can say now with hindsight that I have more or less made it through.

The first week was bloody hard. We chose to escape the city and headed to a remote beach a few hours away. During the day we skimmed stones, dawdled on the beach, visited walking tracks and touristy places. In the evenings my husband and I sat with a glass of wine in our hands, often quiet, often upset, talking about how shit life can be across the dinner table. It was a surreal time, it was as though everything slowed down so we could marinate in our sadness.

Being back at work was hard. I went back a week and a day after surgery. The first person I saw from work was in the lift, she asked, “is everything OK with you?” I’d been out of the office for nearly three weeks without much explanation. I thought I would cry then and there. I looked away and said, “yes, fine thanks.” For the first couple of weeks, I was OK maybe one day in three. By OK I mean that I was able to do some work. The other days I stared at the screen, thinking constantly of what had happened. Trying not to cry.

Then I had a meltdown. I was sitting at my desk one Monday and for some reason I was fixated on our loss. I couldn’t think of anything else. I couldn’t look anyone in the eye. I achieved nothing at work. My anxiety grew. I couldn’t continue like this, I had billable hours to meet. My boss would lose his patience and eventually I’d get fired. Surely. I panicked. I decided I needed time out. I didn’t know how much time.

I talked to my husband and my close friends, they told me to be brave and to talk to my boss. So I did. And he was fine with my taking some time out. But then I faltered. It was as though the fact of telling my boss lifted an immense weight off my shoulders and all of a sudden I felt like I was able to keep working. What a mess I was.

And so here I am. I didn’t take any time off after all. I have terrible days filled with anxiety and sadness, and then great days where I feel a bit like the old me. It’s a process  I suppose.

The day of the surgery

We were asked to be at the hospital by 8.30am. We dropped our son at daycare and drove there with the music turned up loud and ragey, each putting on a brave face for the other. We sat in the waiting room and waited for an eternity, well, one and half long hours. It was not the best start to what you anticipate to be one of the worst days of your life. The explanation given to us for the wait was that I was right at the end of the surgery list of 14 women. It seemed to escape the staff that perhaps they could schedule patients to arrive at different times depending on their position in the list. My mind still boggles at how the hospital was prepared to leave  someone about to undergo a significantly traumatic procedure to sit in a waiting room for one and a half hours.

I met the charge nurse. She was short, probably in her 50s, with red coloured hair and matching lipstick. She apologised for the delay. She asked if I had been advised to bring in an urn or box. I cracked at this, “why does no-one ever tell you anything around here!!” I exploded and cried. “No, no-one told me that.” “Didn’t the social worker talk to you about taking the remains?” “No, but I’ve done it twice before. Can we take the remains?” I explained that the first miscarriage we had left me calling a blood test laboratory trying to find my miscarried remains after being given the wrong number by the hospital. “yes, you can take the remains home with you.”

The nurse then said something quite shocking. “Believe me, this is as hard for you as it is for me.” ARE YOU FUCKING KIDDING ME! I was incredulous. My husband was incredulous. I told her that I doubted that very much and set about disliking her for the rest of our stay. I was flabbergasted that she was the front-facing nurse of the ward. She then gave me misoprostol. I told her I knew what it was and swallowed it. It was a thousand times easier this time compared to my second D&C.

I then had to get changed into the standard issue backless blue hospital gown with underwear that they can cut off. So undignified. It made me cry. I felt like a nobody in that gown. The nurse came in to check that I was OK. She asked if she could give me a hug. That was nice of her. She said, “I don’t have any children either.” I told her, “actually I have a son, he’s at daycare today, he’s two.” Not knowing when to just shut up the nurse advised, “well you should be grateful that you have him.” I don’t know how I was so relaxed about that. Rather than punching her in the face, I let it roll off me. I had enough to deal with today. I was barely holding it together. I could chose not to let her get to me.

We were then ushered into a private room to wait for the misoprostol to take effect. All that really happened is that I began to shake uncontrollably from the cold, or from the drugs, I’m not sure. I ended up smothered in a hot air blanket. I listened to the clock tick away. My poor husband didn’t really know what to do with himself.

Finally it was time. I was wheeled up to theatre. I asked the theatre nurse to please hold my hand. She did. The anaesthetist was there. There was a man holding the blood pressure monitor. I thought to myself, “how can anyone perform this procedure? Doesn’t it break their hearts as much as mine is breaking? Don’t they feel as sick and guilty?” At that moment I completely lost it. I started sobbing uncontrollably and vaguely remember trying to sit up and protest something, although I don’t know what exactly. I felt the theatre staff quickly grab my arms and shoulders and I was almost immediately unconscious. I’m glad the anaesthetist put me out of my miserable state.

As I came to I wanted someone to hold my hand. I was eventually allowed to leave my bed to use the bathroom. And we waited to be discharged  in a small cubicle with another two couples. It didn’t seem the right place to be following such a traumatic event. That said, the anti-anxiety drugs were keeping me relatively calm. The anaesthetist must have really dialled up the dose, as I don’t remember feeling so at ease after my previous two surgeries. The nurse advised I was not to drive, to sign any legal documents, or drink alcohol in the next 24 hours. I had no intention of complying with the alcohol ban.

 

 

Ending our pregnancy, part #2

The night before we terminated our pregnancy, I had to drive by myself to see the surgeon at the hospital. The time by myself led me to reflect on what had happened and what was to come. I felt like life was rolling in slow-motion on a one way street I didn’t want to walk down. Green Day’s “Time of Your Life ” played on the radio as I drove. It felt so ironic. I cried quietly.

At the hospital, I took the lift up to the “abortion” unit. There was a teenage girl and two couples. I wondered what journeys that had been on to find themselves in the same room as me at that same time. I wondered if their pregnancies were all unwanted. I felt ashamed to be in that room, and sad. The hard bump in my tummy made me sick to my stomach with guilt.

When my name was called I spoke with the surgeon. I asked him, I had to know, what happened in the procedure? I wanted reassurance that it would be as peaceful for our baby as possible. I felt sick. I cried. I don’t want to write what he said, not to say he said anything horrific, but it is still too painful to think about it now.

I was called into a cubicle. Two nurses appeared. Both looked at the later stages of their careers. One reeked of stale cigarette smoke. Her teeth and face showed the lines of her habit and probably the stress of her job too. They were hands down the two most wonderful people I met during this time. They asked me to take some paracetamol and joked that they’d fill my cup with vodka instead of water. They asked about me. I cried. I said I had a son, and I wanted this baby so badly. That I wasn’t sure how I would do this. They took me aside. They talked with me and hugged me and sat beside me. One of the nurses told me out of her 11 pregnancies she had four children. That I shouldn’t give up and one day it would be OK.

I was escorted into the surgeon’s room. It was bright and sterile. Having the rods inserted was quick, but it was one of the most horrible moments of my life. I sobbed with so many emotions. Hopelessness. Sadness. Guilt. I questioned myself. I begged our baby to forgive me.

 

Ending our pregnancy, part #1

I didn’t go to work the week that we ended our pregnancy. I couldn’t of course, I was an absolute mess.

On the Monday afternoon, I received a called from a nurse at the hospital. She was  awful. A stiff-upper-lipped English woman who spoke in monotone, as though she was close to suicide. She advised me, in what sounded like a bored spiel she repeated forty times a day, that on Wednesday I needed to come into the hospital. There I would meet a social worker. On the Thursday I would meet the surgeon. The operation would be on Friday.

I asked whether the operation would be performed under general anaesthetic. There was no way in hell that I wanted any recollection of the procedure. No. Way. She said that the standard procedure was to be sedated only, and that if I wished to take it further I would need to talk with the surgeon as scheduled on Thursday evening.

I found it inconceivable that a woman should have to be conscious throughout a termination for medical reasons or otherwise. My mind wandered. Hideous images flooded in. I felt sick. A lump formed in my throat and my heart pounded with anxiety. I rang BEP. “Please tell me that I can have general?” He was surprised that I wasn’t offered general and told me to call back the nurse and demand general. He said that if an anaesthetist wasn’t booked for that morning in advance it would likely be too late to tell the surgeon at my meeting on Thursday. I had to put my foot down and arrange it now.

I rang back. I talked to a different nurse, one with a heartbeat but still not much compassion. She said an anaesthetist is assigned to the list so there should be no problem arranging general. I didn’t fully trust her, as I didn’t fully trust anyone within that hospital. The goal posts had moved on us before.

On the Wednesday, I visited the hospital to talk to the social worker. I wondered whether people looked at me knowing what I was about to do and what they thought of me. I felt ashamed. The social worker wanted to discuss how we’d come about making our decision, whether I’d been under any pressure to end the pregnancy, and what support I had. I felt lucky. I imagined a terrified teenager who’d been careless sitting in my place, or a woman in an abusive relationship hiding a pregnancy. I wasn’t one of those vulnerable women whom these questions were intended for.

The social worker asked if I wanted to see a picture of a baby at 15 weeks gestation, the same as my own. “What?? Why would I want to see that? What is the rationale from the hospital’s view of asking this question? Do they want to discourage terminations? Honestly, I just want to understand why you asked me such a ridiculous question.” The social worker explained that it was to avoid liability from women who say, “if only I’d known that’s what my baby looked like, I would have never terminated.” It made me sad that such cases must exist, that some women truly have no idea about their babies.

Last of all on the Wednesday, I visited the robotic nurse again. She advised me that at the surgeon’s appointment the next day I would need to have one, maybe two, dilating rods inserted into my cervix to dilate it to a safe diameter for surgery. I broke down, uncontrollably. I had no idea that I would have to go through this procedure. It was  another painful kick in the guts. There was no avoiding it. How I was going to summon the mental strength to get through the next few days I had no idea. As I left the robotic nurse stood in the doorway and said in her awkward monotone, “all the best, things will get better.”

 

 

 

 

 

The decision

We decided to terminate our pregnancy. I find it hard to write that. I feel like I need to justify to myself and to others that our decision was one in a range of morally acceptable decisions we could make. I don’t know if it was.

Once we learned that our baby had 100% Down Syndrome chromosomes and a likely heart defect, it was as though the decision about whether we would terminate had been made for us. Even so, we researched all the possible outcomes for our baby. Some of these outcomes seemed bearable to me, others not. I found it difficult to turn my mind to the fact that at forty years old our child may well only have a mental age of seven. That he or she would likely be infertile and may never have a family. That he or she may require constant care his or her whole life. That care may be required well beyond my life, or my husband’s life, what then? It was hard to digest.

I despised myself for thinking about terminating the pregnancy. To me, our reasoning for terminating was entirely selfish. We wanted our child to have a full life, to be able to do all the things we wanted him or her to be able to do. To not burden our son once we were no longer around. Writing this, two months later, I am still coming to grips with what it all means.

In our hearts though, the decision had been made.

We rang BEP, our obstetrician on the Monday morning after learning of our baby’s condition a few days earlier. I was crying before I could say it. But I did say it, somehow. We wanted to terminate the pregnancy that coming Friday, please.

 

The day I learned our baby had Down Syndrome

After I learned from the initial mosaic result of our CVS that our baby “most likely” had Down Syndrome, everything changed. I no longer felt any hope for the pregnancy. All I felt was anxiety, fear, sadness and numbness. I refused to let myself consider the possibility of termination until I knew whether Down Syndrome was a certainty, but at the same time I placed all the feelings of love and excitement for our baby on hold. I was protecting myself and I felt ashamed in doing so.

I spoke to a geneticist at the hospital. I thought I might perhaps learn something from  her, but I didn’t really. She discussed my options at this stage. We would have to wait until 16 weeks for an amniocentesis, with the results likely to come out later that week. We could keep the baby, we could terminate. No pressure was placed on me to choose one way or another. If ultimately we choose termination though, I would likely need to be induced over several days, as surgical termination is rare after 12 weeks and not possible at all after 18 weeks.

This really threw me. I was sick at the thought of an induction. I briefly let my mind wander. I would need to take pills and then wait, overnight, a morning, perhaps an afternoon or even two nights for contractions and labour only to give birth to a baby that was no longer alive. There was no taking this baby home in the capsule and wrapping him or her up and rocking him or her to sleep. Jesus. I couldn’t bear the thought and I cried. I thought of all the woman who must have been through this process, whether by choice or otherwise, whether now or later in their pregnancies. It was heartbreaking.

I was so anxious when I returned home that I rang BEP. “You never mentioned that if we elected to end the pregnancy it would be by induction!” He replied that it was because I’d never suggested to him that we wanted to terminate. Still! He explained that surgery would most likely be possible, provided we were within the 18 week timeframe and one of the two surgeons available wasn’t on holiday. On holiday. Imagine having your path chosen for you because the surgeon is on holiday. I irrationally thought that surgeons shouldn’t have holidays.

I went to work on Monday. But 9am I completely broke down. I sobbed at my open plan desk, in front of my colleagues, our marketing manger, our librarians. My PA shuffled me into my boss’s office. Thankfully he was overseas and I was able to hide in there, blotchy red face and streaming eyes. I asked to talk to HR. Our HR lady came in. I explained everything. The first miscarriage. The second miscarriage. The possibility of things never returning to normal. The 12 week scan. The CVS. The real likelihood that we faced having a baby with Down Syndrome. She said something about one of her friends having a miscarriage. At the moment I realised she had no idea about the pain I was in. I went home.

I was coming home from the supermarket on Friday, just over a week since the initial CVS results came through. The geneticist rang. She said some lab test results had come back. I was mystified. As far as I knew the next step in our process was the amniocentesis at 16 weeks. We were at 14 weeks. “The final results from the CVS have come back. It usually takes much longer which is why the next step we considered was the amnio. The chromosomes are 100% Trisomy 21”, she said. I didn’t cry. I wasn’t shocked. Bizarrely I felt only relief tainted with sadness. It was game over. The worst two week wait ever was over.