Wow guys. What a whirlwind the last week has been. Let me provide a brief background (with links to a more detailed post on pregnancy ultrasounds) below and then I will get into what turned into a very long-winded story. I apologize but I wanted to capture how I felt.
In pregnancy, you generally have two ultrasounds (I recently wrote a post about routine pregnancy ultrasounds here) – an NT scan and an anatomy scan. The purposes of both of these are to look at baby’s development/growth and to look for anomalies or any issues. In some places, the anatomy scan is actually also referred to as the anomaly scan (but I prefer anatomy).
My Anatomy Scan
At 18 weeks, as I did with my previous pregnancy, I attended my anatomy scan. I had done my 12 week NT scan with no issue – everything looked great, baby was developing well (actually ~9 days ahead of my expected due date which is not unusual!), and there were no concerns with my actual NT (nuchal translucency) measurement or any of the other measurements – everything was within range for normal.
I was so excited for this scan because it is the scan where you can ask to find out baby’s sex! We had found out Maggie’s at this scan, and although my husband couldn’t be there we were going to FaceTime to find out. I had attended the same clinic for all 3 of my scans this pregnancy (I had one extra at the beginning due to some minor spotting) and my first two visits had been so good. Friendly technicians who made my feel comfortable.
This scan did not start out the same way. The technician I had was not happy and pleasant. She called my name and had me come back to the room, asked me to lay down and proceeded to the scan. She barely spoke to me other than about half way through when she asked me to empty my bladder because it was too full.
I texted my husband during the scan saying “jeez, this technician is so quiet! It’s making me nervous!”. But at the end of the scan she offered to show me the baby, so I FaceTimed my husband and we both saw the little one and found out the sex. I was happy with that and my appointment was complete.
The Follow-Up Call
I returned home and back to work, and was totally surprised when I received a phone call from my midwife about 2 hours after the scan. She said she wanted to review some of the scan results. The first concern was pretty benign – low-lying placenta. I had that issue in my last pregnancy, and many women do. It moved up later in pregnancy which is very common.
But then she said there was a concern about the baby. What?! The baby had looked perfect to me on the ultrasound. Panic immediately set in. She started with cleft lip – the report said likely. She reviewed with me what cleft lip was and just stated that it can present some issues in the early days with feeding, but that it was relatively common and not a big concern. Ok, I can deal with that.
But then there was something else – called borderline ventriculomegaly. The ventricles in baby’s brain, which are cavities that contain and produce cerebrospinal fluid (CSF), were slightly enlarged. This is considered a soft marker for Trisomy 21 in particular, but also a concern that can arise if there may be issues with central nervous system function. I immediately started to cry.
My midwife was excellent and very comforting – but I was already in a panic. My logical, Registered Nurse brain had jumped ship. I was scared. I was worried. I didn’t know what to think. If I had been more focused at this time and less panicked, I would have asked for more details. What size were the ventricles? For example, something that can make a difference on outcomes. But I was not at all in the right mindset to ask questions.
She advised me she was going to send me for a repeat scan at the hospital – because sometimes community clinics had older equipment – and also submit a referral to Maternal Fetal Medicine (MFM) for a consultation. I agreed as I cried.
I hung up the phone and basically started wailing.
I hadn’t felt this kind of pain before. I hadn’t cried like this in awhile – roughly 5 years ago, when my grandmother passed away suddenly and unexpectedly, I had cried this way. It felt like part of my heart was being ripped out, or something. I don’t know – it was a hard feeling to quantity or compare. I felt like I was in physical pain. I almost vomited right after I got off the phone because my body had already become so worked up.
I don’t blame my midwife for my reaction – communicating this sort of information is a healthcare providers job, and she did an excellent job. She was calm and reassuring, but my mind was already elsewhere. I actually started to confuse what she had said to me only 30 minutes later. I was already lost in my thoughts and anxiety.
I called my husband in tears, telling him something was wrong with the baby – something with the brain. At this time, I hadn’t even really looked into what ventriculomegaly meant. Yes, I am a nurse but I’m a family health/community health nurse – so my expertise is not exactly in fetal medicine to say the least. I knew what it meant, but not what it meant in the sense of fetal development or what it could signal. My husband instantly said he was leaving work to come home. He told me to try and stay calm. I told him I was trying but it was so hard. So hard.
I laid down in bed upstairs and cried. Blowed my nose. Cried some more. Googled and tried to understand what I had just learned. My best advice to you (that is very difficult to follow despite receiving it from others) is don’t Google anything. Instead, wait for your follow up appointment or call your provider back and ask for clarification. Write down your questions and ask. Google opens up a whole scary, dark place. I will admit – there were rays of light too, but there is a lot of darkness that you don’t need when you’ve fallen down a rabbit hole of anxiety.
My husband arrived home and tried his best to comfort me. He called the midwife himself and asked to hear the information again, since my relay of it was not good. He then gave the information to me again and it did help comfort me for a bit.
The rest of the day was a bit of a blur after that.
Actually, the next few days. I worked the next day and it sort of helped to keep my mind distracted, but not enough. My husband took the day off and already had the long weekend Friday off so he was around which was comforting for me.
I went through what I would call a “rollercoaster of emotion”. I’d feel more clarity and calmness for about an hour then I’d plummet back into my rabbit hole. I would try to get out by reassuring myself with information – reading so many studies but also a lot of stories. I looked at Reddit, Babycenter and other forums to see what other women had these findings. I could find many for each one individually, but not both. More worry. Studies that included both were often downright scary. I didn’t want to read anymore but I also needed to.
I joined Facebook groups for the issues and posted my story – I got reassuring responses, but read stories of those with both issues that were not as comforting. Sometimes sad stories of heartache. It was pretty mixed – I read a few good outcomes in a row (mostly for isolated ventriculomegaly or cleft lip but not together) then a few that were heart wrenching. It was an endless cycle. I’d have to cut myself off but it was hard. I had this desire to have more information even though I knew that the only information that would be valuable to me and truly reassuring would be the information about my own child.
Friday we went to the ultrasound – repeat anatomy scan. We went to the hospital this time and my husband was able to come in with me which was nice and needed. He waited in the waiting room for the scan and then came in at the end to see baby. The technician I had was excellent – friendly, great bedside manner and distracting. We talked about the pandemic and what school they went to, and they’d say “oh baby is moving a lot!” often which was nice to hear. They confirmed the sex for us when my husband came in but it was hard to be excited – the worry I had was overshadowing my joy! Just before my husband had come in the tech said they needed to confirm with the radiologist that the views were good. About 15 minutes later, they returned and let me know that another view was needed. More worry. It was quick and I don’t even think they took a picture. The tech left again and called the radiologist and then brought my husband in.
As baby came on screen, I cried. The tech was simultaneously telling us that “to be thorough” we were suggested to have another scan with maternal fetal medicine.
Maternal Fetal Medicine
The weekend was – crappy. I tried to make the best of it but I was just waiting for Tuesday. For my appointment. For understanding and knowledge.
We took Maggie to the zoo and that was somewhat distracting, but not enough. We were supposed to be away for the whole weekend but my husband knew I couldn’t handle it so we cancelled and stayed home. We made the best of it – but I was mostly elsewhere. I cried a lot on and off. I could barely eat – which if you ask my husband, is not like me at all. Especially during pregnancy.
One night I made a list of all my worries and concerns – someone else had suggested writing down my thoughts and concerns who had been through a similar wait. This was helpful – I felt comforted being able to look at what was worrying me on my phone. It felt more clear. I felt a bit of clarity, the haze fading away. The night before my appointment I was really anxious and had a hard time falling asleep – but I did sleep and when I woke up I thankfully, felt calmer.
After what had felt like a century, my MFM appointment day had finally arrived. I dropped Maggie off at daycare, had breakfast and started work a bit early since I knew I had to attend this appointment. My aunt had offered to drive me so my husband didn’t need to take another day off work but he ended up feeling some anxiety himself the morning of and managed to get off and take me. He could not come in, so he walked me into the clinic and kissed me goodbye. They told me it could be a few hours of me being there, so I texted him and told him to go home or to do something for a bit.
I got called in pretty quickly by the Nurse Practitioner (NP) who saw me before the doctor. The first thing the NP said to me was “I just want you to know, baby is perfect.” I was confused – what?! The brain is ok? The NP said that the doctor would discuss everything with me in detail but that they could review the report with me but that everything looked good. Baby was measuring perfectly, everything that was supposed to be seen was and looked great. The ventricles? They were within normal range. What was considered the “higher” end of normal, but still normal. And baby still had a probable cleft lip – but I am totally ok with that! I was instantly relieved. I burst into tears and said I had been worried sick for 6 days.
We completed my health and family history (uneventful mostly except for my brother having had cleft palate), took my BP and weight and I waited for the doctor. The doctor called me down shortly after and we reviewed the ultrasound report and images together. Again – the ventricles were normal. No ventriculomegaly, not even borderline. We looked at the images and the exact measurements. The doctor walked me through the brain anatomy – healthy, looking good. No concerns. The doctor told me they wouldn’t even have flagged it for follow up.
In regards to the probable cleft lip – we made a treatment plan. I’ll have a consult with pediatric surgery and the Sick Kids cleft team. The doctor didn’t think I needed to see genetics but offered it for peace of mind – I agreed to a phone consult just to discuss, but for now declined the amnio as the cleft lip is isolated. The doctor said it was likely just a chance occurrence because of that. I did ask about the NIPT and the doctor agreed to complete the forms for me, so I will do that for *added* peace of mind despite a negative First Trimester Screening (talked about this bloodwork in this post).
I also asked for a repeat ultrasound in 4 weeks – just for peace of mind. The doctor was totally easy going and agreeable and I booked it on my way out of the clinic. A neurosonogram had been offered but the doctor told me they didn’t think I needed it and they weren’t even sure my referral would get accepted since the measurements were normal. Phew. I left feeling a huge weight lifted off my shoulders (or my bump rather).
This experience had made me feel a disconnect with my baby which I fought against hard. I would love my baby no matter what. A lot of my worry concerned the unknown, having to make any choices for quality of life/well-being for our whole family, and what challenges we would face. The MFM was super reassuring and my whole experience at the high-risk pregnancy clinic was excellent.
The good, the bad and the ugly of my experience
So to expand – the good part of this whole experience was my midwife, having an ultrasound at the hospital with better equipment/a better technician and the MFM experience. Basically – care providers and the way they approach sensitive topics and patients can make an immense difference in how we (patients) experience care.
Both my midwife and the technician I had for my second scan had excellent bedside manner, approached sensitive topics with care and provided me with support.
The MFM was a great experience – they started my visit off on a good note, and I loved that the ultrasounds and reports were reviewed with me. I appreciated being able to see those things with my own eyes. I appreciated being walked through findings and having a good explanation of what they meant with an expert who looks at these issues daily. I also appreciated that my voice was heard and that I was able to easily advocate for myself – the doctor seemed more than happy to support my needs and to do anything that eased my anxiety within reason. Through my own advocacy I was able to get the NIPT testing and a repeat ultrasound with no issue. I felt heard, understood and supported. This was the most important to me.
In terms of what went wrong with this experience – as I recommend above, if you have any soft markers or abnormalities on any ultrasound in pregnancy, avoid Google. But at the same time – I know we all crave reassurance, information, and answers. It’s a hard thing to navigate. It is only natural when presented with scary or questionable information to want to know more. In the age of COVID when these things are not always presented to us in-person, this becomes an even bigger issue. I think that there are benefits to sharing our stories. That is what my whole platform & podcast are about. It can be comforting and it can be a way of receiving information about an experience – more than just facts. I felt a kinship to the women whose stories I read who told me how they felt – I didn’t feel so wrong feeling some disconnect from my baby because other women had felt that too during times like these. I appreciated seeing the information women had got from various doctors or providers across the world. Many also read studies and shared links. It’s not all bad, but you have to keep in mind when reading anything online that there will be those not-so-shiny stories of heartache, loss, and difficulty. Many of those who struggle are often more likely to share their story – or people share and don’t provide a conclusion so you’re left wondering what happened. What was their fate? This is why today I went through my posts I made in various places and provided an update. So other searchers would be able to see what my outcome was.
So Google and the internet are a bit of a double-edged sword – neither a necessarily good nor bad experience. They have their value but you have to remember that someone else’s story is not yours. And that you don’t necessarily fall into a certain statistic in a study. You just don’t know yet – until you see your provider, or do your follow up testing.
I think what I saw as the worst part of my experience was the lack of standardization in reporting certain measurements or findings in ultrasound. Now I’m not a radiologist and of course they are all welcome to their clinical judgment as doctors – I appreciated that the concern was flagged in a way but I just wish there was a better way of going about it. Or that it was worded better initially. There is also certainly a margin of error for measurements in themselves. On one report, I was flagged as borderline and the second it was just “high end of normal”, despite the readings being 0.2mm different and both within normal range. The NP said something great to me, along the lines of “some people have to fall in the high and low ranges”. That is literally why we use ranges – there may be an average central number but there are always outliers. The range indicates normalcy, it’s when you fall outside of it that it becomes abnormal (and even then, at least in the case of ventriculomegaly, there are still out-outliers that could still be normal variations, for example in borderline/mild measurements!).
With the measurements – there isn’t much we can do. Measurements will probably always be open to error. What we can do as providers, is let people know this possibility. Make sure they know it’s a possibility, but I think it’s still valuable information to have. Just more education in general about what all these possible findings mean or can mean, would be incredibly valuable for parents as they navigate this scary world of more advanced ultrasounds!
I had told my grandfather about the findings originally and he had said to me how when my grandmother had children, they never knew any of this stuff. They just got pregnant and carried the baby and found out about things after. He appreciated the value of ultrasound – he said that there are certain things that need to be found or you benefit from knowing about so you can take action or prepare; and it’s good they catch those. But he also said that sometimes he thinks they’re almost too good, and they cause unnecessary worry.
So I appreciate that my findings were flagged – just in case. I appreciate our technology and the precaution. But I think what needs to be worked on most is education about these issues and sometimes also communication. Walking patients through results, images and findings should really be a standard practice if it’s available/possible. We’re in an age of knowing -people want to know and understand. They also want to see everything. They want access to things at the click of a button. This is why EMRs are now more patient-accessible – don’t get me wrong, this has it’s own issues (ie. patient seeing report before doctor and without explanation) but I think things like this have a lot of value for the needs of the population today. Being able to review these things with your own eyes with your doctor or provider is incredible and made my experience better. It fed that need in me to know – but it fed it with trustworthy information, right from my doctors mouth. I appreciate that.
I also think that bedside manner is SO important – and I think that goes for anyone in the healthcare field, not just doctors and nurses. It matters even how a receptionist talks to you, for example. They are often the first and last person you see after all. That matters. I’m not saying a healthcare provider should give you a false sense of security at an appointment that brings up concerns – but they should at least speak to you like a human being and demonstration compassion. That is a major component of good healthcare.
So, let’s make more of an effort to help support people understanding what is going on with their body. I think that is the answer to a lot of our patent-provider interaction problems.
I think we as healthcare providers sometimes think too much of the health and not so much of the care, and the person who is receiving it. We can do better than that (and no – I’m not saying my experience was bad like that but over the time this occurred I read so many stories from women who honestly were not spoken to nicely or treated well in this scenario and it made me sad to read). Let’s make an effort to learn from patients and improve our practices to better meet their holistic health needs.
For the mamas or dadas or parents going through something similar…
I can’t say don’t panic, because you probably will regardless. So many people told me to be relaxed, but it’s hard. Nearly impossible. Distraction while you wait between appointments can help, but really you need to give yourself space to feel what you feel. Writing down my thoughts and concerns helped me to better understand why I was feeling a certain way. Talking about things with my spouse or a close friend/family member was also helpful. Researching on my own would help at some moments and hinder at others – you know your own limits, but be careful because it’s easy to get sucked down a rabbit hole of information.
The thing that helped the most was definitely speaking to the MFM and receiving a thorough explanation, and setting a plan in place. So as hard as waiting can be, write down a list of questions for your provider and ask questions. Discuss options. I asked my MFM a lot “what are your thoughts on this?” because I trusted their input (so quickly because of that good bedside manner and their approach to patient care).
I will be sharing more of my journey through this experience – I have both a paediatric consult and genetics consult coming up and will make posts after each to give an overview for any (potential) future cleft parents out there! Our cleft lip still is not at 100% confirmation but I’m hoping our ultrasound in 4 weeks can give a better view so we have can have better expectations. Thanks so much for reading if you got this far!