One of the mom groups I’m on was discussing a private sonographer and maternal-fetal medicine specialist (MFM) the other night and I saw them both when I had my diagnosis for Baby Bryce. The discussion brought up all the memories for me of when my appointment for my 12 week ultrasound went badly. I realised there’s not a lot of information out there about what it’s like for the mom!
When you’ve experienced miscarriage and fertility trials and tribulations you don’t look forward to ultrasounds. In my case the initial ultrasound goes badly more often than not, so every ultrasound involved holding my breath until I heard the heart beat. Every single one – even when I could feel my two full-term babies moving, I still dreaded ultrasounds.
The Specialist Sonographer
I’d seen this particular sonographer with my daughter for the first time. I remember our first appointment at 12 weeks. I held my breath until she got a heartbeat and then sobbed almost uncontrollably for the rest of the appointment. We saw her again at 20 weeks and she sent the gender to the lady making my baby’s newborn nappy stash. I’d only had those two appointments with her and things had all been fine in the end.
So when we arrived for our 12 weeks scan on a Friday morning in March 2019, I was apprehensively excited. As I entered the room I said to her “no tears this time”. I held my breath, as I always do, and then we heard a heartbeat. I could relax a little. She didn’t. I could tell almost immediately that something wasn’t right from her body posture and the slowness of her movement. Then I saw the screen and realised things didn’t look quite right. As all of us do, I think, I was saying to myself it was just a different angle and she would explain it shortly. But she paused. You could see her bracing to tell me the news knowing I’d just told her “no tears today”!
She told me “something didn’t look right”. There was excess fluid around babies neck, head and abdomen. She mentioned the words cystic hygroma. I was advised to see my gynea as soon as possible. She was the first to use the term “incompatible with life”. It didn’t help that I was between Gyneas at that stage. And it was Friday morning. The first appointment to see a Gynea I could get was Monday morning.
When the ultrasound goes badly, everything moves both very quickly and extremely slow. I sat in this bubble of concern and sadness, while people were rushing around me trying to get appointments booked, and sending documents and getting things done. People don’t like to be around bad things, so it feel like they’re trying to get you out of their space as quickly as possible. Although we left with a report to give our doctor, there weren’t any pictures for us of our baby.
I was so grateful I had insisted my husband was there for this appointment. He drove us home as I cried. Tears streaming. Mulling over the words. We got home and I told my husband that we needed to consider carrying the baby as far as possible in order to be an infant organ donor. I spent the weekend googling and researching and trying to find as much information as possible. Almost all of this hiding in bed. Sometime having superior Googling skills is not a good thing. Oh and crying. Lots of tears. And cuddles from my two living kids.
The Gyneacologist Appointment
Monday we went to the Gynea. I’ll write a whole other post about the problems with overworked Gyneas in South Africa at a later stage. Our appointment was at 7h30, and we finally saw the doctor at 10h45. A 3 hour wait for the actual appointment and he almost immediately called the well-know MFM. While discussing the diagnosis and treatments he referred to the exact same website I had googled over the weekend. Our appointment for the MFM was that same afternoon.
When the ultrasound goes badly doctors don’t seem to consider the person carrying the baby that much. There’s a lot of focus on getting a diagnosis, and moving forward with testing. Again we left with no pictures of our baby.
The Maternal-Fetal Medicine Specialist
We’d just got home from the Gynea and the MFM’s office called to push our appointment forward. So we headed there. Back into a dark room for more scans and more explanations of the severity of the CH. Again the “incompatible with life” phrase. It’s such a cold phrase without being morbid. In the termination support group I’m part of, this is a phrase that’s often mentioned as incredibly triggering for many women.
At the appointment the diagnosis was confirmed and the specialist recommended we do a CVS test. It was all a huge amount to take in and I teared up thinking about the enormity of the decisions we would need to be making. The doctor then said one of the hardest things I’ve ever heard – “If you’re going to be emotional about this we can’t do the test. You need to be still and strong!” Even through everything going on I was deeply annoyed at this comment. My thoughts were “you’re in the wrong business if you can’t deal with emotional women!”. I told him that my emotional state and my ability to be “still and strong” we completely unrelated.
Then the actual CVS test. A swab of numbing cream, and a local anaesthetic injection. A giant needle poked into my belly and wiggled around and poked up and down multiple times to get a decent sample. Not my favourite procedure. My husband spent this part looking in the opposite direction of the doctor while he did the test, but turned around as the doctor moved to the other room and saw the needle. He went grey!
Then trying to figure out how to actually pay the almost R6000 fee for the test. Sitting in the waiting room watching happy couples leave with pictures of their unborn babies, while we sat there processing the devastating news and trying to find a large sum of money mid-month.
When the ultrasound goes badly at the MFM’s office, it’s pretty much business as usual for them. He’s well respected in his field, but honestly it was probably the least compassionate place I have ever had to deal with the huge emotions that come with something like this.
When the Ultrasound goes badly, there are people involved
Going home with 3 straight appointments and no photos to show of my baby. It seems as soon as there’s bad news, everyone forgets that this baby is actually someone the parents already care deeply about. This baby has been dreamed and imagined into a family. They forget that we might want to acknowledge this baby’s short life, or have pictures and memories of our time together! The picture above is the only ultrasound picture I have of Baby Bryce that was given to me, all the others are copied from reports from various doctors.
Talking about the sonographer and the MFM that night really triggered me. It’s almost a year after this incident and I’m still struggling with a lot of the emotions. I’m never even sure what might trigger me or what might not. I go days at a time now of feeling mostly content and not focusing on my experience, but out of the blue a conversation will trigger the emotions. And so I write. Trying to make sense of what happened, trying to process my feelings and thoughts, trying to be a beacon for anyone else feeling the same things!