Well I waited to do my 24 week update until 25 weeks because today was my neurosonogram appointment.
A neurosonogram is basically an ultrasound of the baby’s brain, done non-invasively. They are best done in the 2nd or 3rd trimester (earlier) for complete visualization. Mine was done abdominally and transvaginally when baby was turned to cephalic (head down) presentation. It was done in both 2D and 3D.
I was referred for a neurosonogram by my high risk OB/MFM because at our last anatomy scan 2-3 weeks ago, baby had a lateral ventricle that was measuring 11 mm (normal is <10mm – however this will depend on the source you look at). This was considered borderline ventriculomegaly (enlargement of the ventricles). My MFM/OB did remeasure this and find that it was actually measured in the wrong spot and was less and within normal range, but to be extra sure she suggested this scan and because I just wanted answers, I accepted.
Now if you have been reading my updates from 18 weeks forward, you know this has been an ongoing issue that has gone between “normal and abnormal” depending on who reads the report. You also know that we were given a probable cleft lip diagnosis at our 18 week scan and were set up with pediatrics, genetics, our cleft team, did a fetal echo and so on (start from this post and read my pregnancy journal posts forward for the full journey).
Well – I attended this neurosonogram today and also saw the MFM at the hospital (Mount Sinai in Toronto) at their Special Pregnancy Program. I was nervous – like I have been for all my scans, because of the beginning of this semi-abnormal scan journey frankly causing me trauma/anxiety to a certain degree. As usual, I had to attend the appointment alone. I took the day off work and drove the 45 minutes in morning traffic to downtown Toronto. Check in was smooth and easy at the hospital (we were actually in a building just beside the main part of the hospital so it was probably less busy) and I sat down for about 15 minutes before I got called in almost right on time. Very impressed.
I did my initial history/intake with a nurse, and before we could even finish I started my scan with one of the Fellows/MDs there. We continued my intake through the first half of the scan, and then the MD and I worked on getting some particular images of the brain and the rest of the anatomy. We did most of the scan by abdominal ultrasound, and tried for some additional imaging when baby flipped to head down closer to the end with the transvaginal probe. One thing I will say – at 25 weeks, the transvaginal probe was pretty uncomfortable. It actually reminded me a lot of the pressure you experience in early labor phases. It wasn’t painful – but a lot of pressure when you’re on your back. I sat at the edge of the table near the end to try and get an image and I have to say that was much easier on my body!!
I was seen by the Fellow and the fetal neuro MD for the end half of my appointment.
Well.. what happened?
We got good and also very surprising news.
Firstly, we found that baby’s ventricles are normal and he does not have ventriculomegaly to any degree. They were reported asymmetrical – but this is not clinically significant and both lateral ventricles were within normal range. Everything else in his brain – as it has before – looked great.
What we were surprised to also find out is that baby does not have a cleft lip or palate. We were lucky to visualize the soft palate on the scan thanks to baby’s momentary cooperation (here is some info on why this is difficult to diagnose by ultrasound and techniques that may help to catch it in some cases), and I was even shown his lip in 3D and it’s not cleft (confirmed of course by my doctors)! He actually has these big, full lips that are kind of super adorable. I mean, he would have been adorable with a cleft too I have no doubt.
A few people asked me how this can be misdiagnosed – well in our case, I guess we never received the “confirmed” diagnosis. I am also not a doctor, so it’s best to pose these questions to your MD. For baby boy’s “cleft lip” – it was suspected in two scans and so it was presumed it was there. There is some literature though on how it can be false positively identified – things like the umbilical cord being in or near the face, for example. This would make sense for him since we saw he had both his hands and cord in his face today and the doctor had to do some maneuvering to get clear images of his face. Similarly – ventriculomegaly can be mismeasured or measured differently, and there is also some discrepancy in literature about what is normal for measurements. If your baby has been diagnosed with either of these issues and you have questions, I highly recommend speaking to your Maternal Fetal Medicine specialist. They are truly the experts and I have found all of mine very reassuring and good at explaining these things.
So – wow. What a journey. I was told to enjoy the rest of my pregnancy, and my only follow up request was for a growth scan around 30 weeks because (as has been consistent with our last 2 scans) baby is measuring on the larger end. Not too large, but he is a big healthy boy! So to make sure we have a plan in place if needed for my labor, we will have one more ultrasound but… we are no longer high risk!
My Feelings/Thoughts About This Experience
This has been an absolute rollercoaster for me. This whole “ride” started just before Labour day long weekend, and is now just culminating (thankfully) with amazing news about 2 months later.
One thing I can say is every single specialist I have worked with since this happened has been fantastic. Best bedside manner I’ve come across professionally, and as a patient. Everyone has made me feel comfortable, supported, and provided reassurance when it was needed. I am very thankful that I was blessed with such amazing interactions.
I am feeling – at this moment – tired. Emotionally. It was a ride, like I said. I shed a lot of tears the past 2 months, more than my normal “pregnancy tears”. I worried constantly. When we got the cleft diagnosis – we prepared for this journey after birth too. We were ready and set up to help our little guy succeed. With the whole brain scenario, I was definitely more scared and worried. I wasn’t sure what it would mean for him, or me, or us as a family. The uncertainty of it all was frankly, frightening. I lost sleep. I shed tears. I prayed and hoped for good outcomes.
The news we got today was relieving. We have, since our first MFM appointment, received mostly reassuring news but I’m just glad to have the ventricle issue answered and cleared up by an expert. The non-cleft diagnosis is really a bonus! We would have been OK – but both my husband and I expressed relief that we don’t have to now worry about the frequent downtown visits, surgeries and so on that came with it. I did not expect that part really at all – a part of me wondered, because it was always a “probable” and never a sure diagnosis of even the lip, which I found odd and not consistent with the stories I had heard from other parents. But – I have anxiety, so as much as I can hope for the best, my mind/body tend to prepare for the worst. I am so very thankful and blessed that baby boy is healthy, and the cleft lip being not present is just a reduced anxiety for us as second-time parents!
The team at the hospital today was amazing – the timeliness of the appointment, guidance and results were all fantastic. I was really impressed.
This experience has taught me so much that I haven’t fully processed yet – so I’m sure I’ll write about it again in the near future. But for now I’m going to relax and take it easy!!! Mentally, emotionally, and physically. Just for one night – then I’ll get back to the grind tomorrow.
Thank you so much for following along and all the distance support I’ve received online. It has really helped me get through this – that, and my husband and family’s support of course. I will continue to share my regular weekly to biweekly updates! Next up: my glucose tolerance test and flu shot – yay…..