Perfect Plans and Other Lies

So it’s been just about a year since my last post. Wow – I suck at this blogging thing! I’ll spare you all the (several) lame excuses I spent the last few minutes coming up with and get right to it.

I pushed the most recent events out of my head and decided that the rest of my pregnancy would be focused on learning as much as I could about spina bifida so I could be prepared for whatever challenges Carter would face when he arrived. Everything I read kept repeating itself over and over: SB is a disability with a wide range of potential issues and an even wider range of severity which varied from case to case. This was probably the hardest part for me at the time – not knowing exactly what to expect so I could plan accordingly. It doesn’t bother me anymore. Having Carter has enabled me to (somewhat) let go of my incessant need to make plans and just take life as it comes. That sounds like such a cliché, but this is a notion I’ve held on to for a few years now and sometimes it’s the only way I find myself able to cope when things get crazy.

I want to take a minute now to briefly touch on something I promised myself I wouldn’t post about when I started this blog – my relationship with B. The purpose of this blog is not only to share my experience, but to give all of the moms out there a real story about life after a prenatal diagnosis. And that includes how the diagnosis affected my relationship.

Relationships are tested whenever you have a child together, diagnosis or not. Becoming a parent is tough. Period. But when you find out that your unborn child faces a lifetime of challenges, it’s a completely life-changing, devastating experience that does take a toll on your relationship with your significant other. It goes one way or the other – either you become closer as a couple and come out stronger than ever at the other side, or you end up not being the team you thought you were and you go your separate ways. For us, it was the latter.

Please, please don’t get me wrong. I’m not saying that we broke up because of Carter’s disability. I can’t stress that enough. Somewhere in my hours upon hours of reading, I came across some statistics on the correlation between divorce and disabilities, and read about a few women who swear that their unborn child’s diagnosis ruined their marriage. I don’t think that’s true, at least, not in the long-run. Reflecting back on our relationship, I know for certain that we would have never worked out. This news was more like a catalyst towards our inevitable demise, which I’m actually pretty thankful for from where I’m sitting now. Life will always throw challenges your way, some more difficult to overcome than others. If your relationship doesn’t survive those challenges, I’m a firm believer that you’re not with the right person anyway.

The next few months were a blur of school and appointments. I obsessed about the lesion level on Carter’s spine and the size of the ventricles in his brain. His ventricles were slightly enlarged and becoming more so with every check up, which meant that the possibility of him needing a shunt to drain the excess fluid in his brain was becoming more likely. For those who don’t know, a shunt is basically a valve with a tube coming out of it that diverts the excess fluid to another part of his body. Amazing.

Two months before our lease was up, our landlord let us know that they would be selling the condo we were currently renting. The end of our lease just happened to coincide with the month I was due, which was in April. So, I thought to myself, just to recap, I’ll be having a baby and finishing my degree and moving to another place all within the span of a month. Awesome. At that point, B and I were still together so we decided the best course of action would be to move back to my home town and stay with my parents over the summer so B could work and I could stay home with Carter. The perfect plan. Almost.

Level 2

Wednesday finally arrived, and I looked like hell. I had bags under my eyes from either not enough or too much sleep – I couldn’t really remember. I felt weak and nauseous, my face all blotchy and swollen from crying for the majority of the past five days. I was anxious, emotionally and physically drained, and just plain pissed off at the world. We were stuck in early morning rush hour traffic, and my fuse was all but gone. I snapped at B as he “let” someone in front of him – in reality, they cut him off. But I was looking for any and every excuse to project my anger on to someone. Anyone. We arrived late, but it was like the receptionist knew what we were there for. She gently told me to take a seat in the waiting room and that they would call me back right away. They did.

I remember the Doctor who did the ultrasound. Her bedside manner was less than stellar, and although I’m not one for small talk, this woman gave me a bad vibe. She talked while the nurse accompanying her scribbled down notes. I heard her say L4-5, S2. I knew from my research that she was referring to the level of Carter’s ‘lesion’ on his spine. Spina bifida is considered a “neural tube defect,” and Carter’s spine didn’t close as it should have during very early pregnancy. Basically, his spine had failed to form properly before I even knew I was pregnant. When the Doctor said L4-5, she meant that the opening started at either the 4^th or 5^th lumbar vertebrae, and his defect went all the way down to the 2^nd sacral vertebrae.

After the ultrasound, Dr. Friendly left the room without a word and a few minutes later, I was directed to another room just like the one I had received Carter’s diagnosis in. Soon after, she arrived and sat down on the arm of the chair beside me. She went over a few basic things about spina bifida that I had already read about. She told me that they believe he had the “myelomeningocele” type, which felt like yet another punch to the stomach. This is the most common type of diagnosed spina bifida, and also the most severe. I had spent much of the past few days wishing for it to be any type but this one. It meant that the nerves in his spine were exposed to the amniotic fluid surrounding him, and that this was causing nerve damage. I was overcome with self loathing. My body was hurting my baby, and there was nothing I could do about it. She said that it is difficult to diagnose lesion level on an ultrasound, but that their best guess was that the lesion started around L4 and went down to S2, just as she had stated in the ultrasound room before. She also talked about the markers they saw in his brain that were indicative of spina bifida. He had both the “lemon” sign, and the “banana” sign. She classified this as the “Chiari II malformation,” which I had also read about. This malformation was what could cause potential eating, swallowing and breathing issues. Along with this, she also said they noticed mild hydrocephalus, which was a build-up of cerebrospinal fluid in his brain.

Oddly enough, I had no more tears. I sat there, numb, absorbing as much information as I could. That is, until, she said “and there’s actually something else I’d like to discuss with you before you leave.” My heart nearly stopped. What now? What else could possibly be wrong?

“We’re concerned because he hasn’t been opening and closing his hands during his ultrasounds. This could be just that we’re catching him at the wrong times; however, it is also a marker for Trisomy 18.” Having been tested and given risk percentages for Trisomy 13, 18 and 21 during standard testing in early pregnancy, I knew that Trisomy 18 was fatal.

I started to sway. Was I going to pass out? I closed my eyes and tried to regain my composure. “What do I do, now?”

“Well,” she said, “we would like to get you in for amniocentesis tomorrow. We would insert a needle into your stomach and draw out some of the amniotic fluid surrounding the baby. This would enable us to definitively diagnose the myelomeningocele, as there would be spinal fluid present. It would also allow us to study his chromosomes in complete detail, which would tell us if he is positive for Trisomy 18. There are, of course, risks associated with this procedure. The rate of miscarriage is about 1 in 200. The choice is yours.”

I decided to make the appointment, take the day to think about it and let her know I would call in the morning to confirm or cancel.

I went home, and immediately pulled out the results of my 13 week ultrasound. I was given a 1 in 8806 chance that he would have Trisomy 18. That had to be good, right? After some thought, I decided to go through with the amniocentesis. I needed to know.

D-Day

19 weeks and 6 days. November 16^th, 2012. D-day is what I call it now: diagnosis day.

I woke up (and I use the term ‘woke up’ loosely, as that would imply that I got some actual sleep) feeling over the moon. The day I would get to see my baby again was finally here! For those of you non-pregnancy buffs out there, the 18-20 week mark is when they do a super detailed scan of your baby to check for any red flags, health wise. To say that I wasn’t worried, like, at all would be a bit of a lie. I am a worrier, by nature. Somewhere deep behind my elation there was a little nagging feeling of “what if?” It was nowhere near enough to scare me or make me feel like I needed to prepare myself for bad news, so I made lunch plans with my boyfriend (let’s call him B) for after the ultrasound, snapped a quick photo for my Facebook pregnancy group and we made our way to the clinic.

When we got called back, everything started off perfectly normal – just like any of the ultrasounds I had already had. I was trying not to pee my pants, and the cheerful ultrasound tech was asking questions about my pregnancy as she took baby’s measurements. She asked if I wanted to know the gender and I said that I was told a few weeks ago that we were having a boy. She said that’s what it looked like to her as well, and I told her the name we had picked out. All of a sudden, it was like a switch went off and her demeanour completely changed. She lost her cheerful tone as a look of concentration spread across her face. I could tell she was trying to be professional by the way she explained what we were looking at, but I could also tell that something more was going on. My heart was in my throat, but I was too scared to ask.

She was looking at baby’s spine.

She measured and stared as she snapped photo after photo, the corners of her mouth showing the faintest hint of a frown. Every word that left her mouth was calm, cool and calculated. Each click of the mouse brought on a new wave of fearful nausea in the pit of my stomach. After that, she moved to baby’s brain.

I held it together long enough for the ultrasound to be done. Afterwards, she told me to stick around as she was going to have me speak to a doctor before I left. She closed the door, and my lip started to tremble as I looked at B. “Something’s wrong with our ba-“ I said, but my breath caught in my throat before I could finish my sentence. I tried to swallow, but my throat was too dry. “You don’t know that, please don’t cry” was his response, but it felt far away. It was like my body was preparing for the impending terrible news by trying to shut down. Even now, as I type these words, I can feel my chest getting tight and the tears start to form as the memory of that moment comes back to me. I was so scared. A few minutes later, she came back and directed us to a room where we would sit and wait for the doctor. Three chairs, some magazines and a portable ultrasound machine. The room felt cold. Sterile. I managed to slightly regain my composure while we waited, but as soon as he came into the room and sat down, a solemn look on his face, I knew it wasn’t good.

What he said was a complete blur until I heard the words “spina bifida” come out of his mouth. Aside from maybe reading those words a few times during my baby research, I had never heard of it before. I tried to listen carefully to what the Doctor was saying. Something about 3 different types. Can’t definitively diagnose which type until we get a “level 2 ultrasound.” Amniocentesis. Possible complications: lower limb paralysis, muscle weakness, loss of bowel/bladder control, fluid build up in the brain, issues with eating and sometimes even breathing. I felt like I was punched in the stomach. I don’t even know how I was crying with no air left in my lungs, but I vaguely remember being doubled over in the black leather recliner wondering where those faint sobs in the background were coming from. I tried to concentrate through the haze, and then it hit me. It was me. Those sobs were coming from me. After awhile, the Doctor left. I will never forget the look of sympathy on his face as our eyes met before he closed the door behind him. I’m not sure how long we stayed in that room, but I was still sobbing as we left and I can still see the concerned stares from complete strangers as B helped me to his car.

The rest of my day consisted of crying, numbness and sleeping. Somewhere in the midst of all this, I wrote this to my Facebook group:

“I’m absolutely devastated. I just had my ultrasound this morning, and my little boy was diagnosed with spina bifida. They don’t know how severe it is yet, I have a more detailed ultrasound Wednesday morning. This is by far the worst day of my entire life, and I could really use some positive vibes sent my way for Wednesday morning. I’m shocked, devastated and beyond terrified. I don’t know what to do or how I’m going to make it to Wednesday without knowing anything more.”

It turns out, I made it to Wednesday by surviving on the love and support of the incredible people in my life. My parents dropped everything and made the 8 hour trip to Calgary so they could be with me for the level 2 ultrasound. My best friend (who was no longer staying with us to complete her practicum) offered to make the trip down from Edmonton. B made sure I ate, held me as I cried and gave me space when I needed it. I tried my best to stay away from Dr. Google, but my desire to arm myself with information (even if it was worst-case-scenario information) got the best of me. I wanted to know anything and everything there was to know about spina bifida so I could make sense of what would happen on Wednesday.