My pregnancy diary – antenatal screenings, high NT measurements and CVS

I found out that I was pregnant just after my birthday in mid-August.  In a state of glorious, summertime bliss we floated through those first weeks, keeping our little secret under wraps as we imagined what our baby might be like, and made plans.  We actually had two ’12 week scans’ because we discovered at the first one that I was only 10 weeks’ pregnant – but all looked positive and we booked a further scan for three weeks’ later, excited that we would be able to reveal our little secret to those we hadn’t told yet, and carry on with the business of celebrating.

20 week pregnancy announcement

At that scan the ultrasound technician discovered 7mm of fluid behind the baby’s neck.  This is called a ‘high nuchal translucency measurement’ (there is more on this website about nuchal translucency and how it’s examined in the 12 week scan).  From that website: “The baby with an NT of 6mm has a high chance of Down’s syndrome, as well as other chromosomal abnormalities and heart problems. It’s rare for babies have as much fluid as this.”  We were told this during the scan and advised that I would have to have further tests to find out of the baby did have a chromosomal abnormality (these range in how serious they are for the baby – some would mean the baby would be healthy with some complications, some are severe, etc).  As the quote states, it also raises the risk of heart and other developmental problems.

I wrote some words on the day we came back from hospital, and again around six weeks’ later.  This has been saved in my drafts since this time, simply called ‘Baby’.  It feels right to share it now.

*This is a rather frank outpouring of thoughts and could be upsetting for anyone who has suffered complications in pregnancy.  Please read on only if you feel comfortable doing so.

10 October 2019 – 12 week scan (13 weeks)

It is not possible that the baby is ill, I think, because we are going for dinner afterwards to celebrate.  It is not possible that the baby is ill because we’ve already planned our pregnancy announcement tomorrow.  Because we’re clearing the room that will be its nursery.  Because we’ve made a list of names.  Because the Pregnancy App just sent me a notification saying “Congratulatations Mama, you’re 13 weeks!”

And yet here we are.  In Ultrasound Room 3, with the lights slightly dimmed, with a specialist explaining to me what chromosomes are even though I know what chromosomes are and asking if we still want the photos of our baby even though I can tell by how serious everyone looks that this is quote-unquote “not good news”.  How naive I was, I think, to treat this scan as an opportunity to see the baby wiggle around on a screen and get some photos we could share with friends and family.  It never really was that at all, I realise.  It is a scan to see how the baby is developing and understand whether there are any inherent risks or complications.  It is an important test, a hurdle to jump over in the long marathon of pregnancy (not a moot pause before the opening of champagne that you cannot drink anyway).

So as I watch the other Mothers in the pre-natal ward glide skilfully over that first hurdle, I feel myself crumple – left with scuffed knees and a sense of failure, of shame at how early on everything is cast into uncertainty.  The track now diverts; away from the smooth, easy route towards the delivery room and instead towards a dark path filled with further tests, difficult decisions and calculations of risk.  “This is not how it’s supposed to go,” I think, as if that has ever, ever made any difference at all.

They ask us if we want the money back for the photographs and we say okay, sensing that this is something that they have to do to inject some sense of decency back into this mess.  To do the ‘right thing’ amidst a scene where everything is wrong; where we leave the hospital clutching the maternity folder and where I weep gently in the lift.  Where even inside of me, life goes on.  (In the morning I still retch over the sink, the baby still grows a little bigger and I get an email from Start4Life telling me I’ll ‘feel fantastic’ as I move into the second trimester).

I feel bad for the baby, remembering the movement of it wriggling around the screen with abandon and not knowing that the measurement of fluid behind its neck is ‘a bad sign’.  I feel bad for the friends and family I have told so far, who have been sending me excited messages asking about the scan.  I feel bad for him, feeling that my body has somehow failed our child and that it is my fault.  I wonder if I had a bath that was too hot, or if it’s because I ate a prawn cocktail a few weeks ago before I remembered, or if I lifted a heavy bag or didn’t eat enough kale.  In my mind I promise that if the baby is okay I will take my folic acid 100% of the time rather than 95% of the time.  I will give it something more nutritious than Dairy Milk and Square crisps.  I will love it harder and more fiercely.  I want to fight for the baby.  I don’t want this outcome, I don’t want this ending.  That night I cry big gulping sobs until I can barely breathe, thinking about that tiny baby moving its hands around on the screen; that image juxtaposed against the table of figures the Doctor showed us indicating that there was a 65% chance that our tiny baby will not make it.  I have never wanted anything as badly than for our baby to make it, and there is nothing at all we can do but wait.

4 December 2019 – Week 19

I don’t know how we’ve got to this point but we are here, clinging on and jumping the hurdles.  Not skilfully but messily, with tears and hard conversations and sleepless nights and entire days sat by the phone willing it to ring with good news.  There has been so much waiting – almost two months in total, with weeks stretching out between tests and test results.  In October I had a CVS test where they take cells from the placenta for testing (it was painful) – we then had to wait a week for the first set of results and then three further weeks for the second set (they grow the cells in a lab).  We have seen the baby three times since our first scan, bigger each time on the screen and in our hearts, swelling in size as we dare to let our hopes grow that our baby will get through this.  It is getting through this.  We are getting through this.  Every time I see the hospital phoning I start to shake with anticipation, during one conversation my teeth chatter for the duration; the stress is almost too much.  I hold my breath a lot.  Today I held my breath though a private, 20 week scan designed to check the baby’s organs and development.  Every time the Consultant frowned, or paused, I prepared myself for the worst.  But that little baby waving its hands on the screen is looking healthy and developing as normal for our due date.  We dare to believe that the world will change on April 29th, that the three of us together can reach the end of this marathon.

6 December 2019 – Week 19

I know from forums and pregnancy books that we are incredibly lucky to have got this far given the odds we were given at that first appointment, and the prognosis in our first appointment with the Fetal Medicine Doctor.  An honest rundown of the situation: instead of celebrating with friends and family and buying baby clothes, the last seven weeks have been punctuated by discussions about which conditions would necessitate a termination and which chromosomal abnormalities are (the worst phrase I have ever heard) – ‘incompatible with life’.  At 18 weeks, we still didn’t have full test results and they were concerned that the cells were growing too slowly in the lab to be tested.  A consultant phoned to advise us that we might have to have further tests with another long waiting period which could then take us beyond the point at which it was safe to end the pregnancy should we discover a serious issue.  (We were lucky that this did not happen, and we discovered at 18 weeks that the second set of test results were clear, meaning that the baby does not have a ‘chromosomal abnormality’ that the nuchal translucency initially indicated).

The final stage is (and was) to have a full anomaly scan – this is the scan that you always have at 20 weeks to check the development of the baby and its organs, bones and abdomen etc.  This scan is key for us as it’s the final stage in reassuring that the baby is definitely healthy – when you have the high nuchal translucency measurement this can sometimes mean that there isn’t a chromosomal abnormality but that the baby has a heart condition or other complication.  There would have been two weeks between the clear set of test results for the chromosomes and the anomal scan so we booked a private scan for last Wednesday to give us some earlier reassurance.  The good news is that the sonographer advised us that everything is looking healthy – the appointment was almost an hour and she went through every tiny part of the baby in great detail (it blows my mind that you can examine the various chambers of the heart within a baby that is currently the size of a pomegranate).  We’ve heard the baby’s heartbeat and I’ve felt her move around in my belly – yes, we also discovered that we are having a little girl! (Through the chromosome results and the private scan).  We decided that we needed something to try and reclaim the excitement of pregnancy, since the last few weeks we’ve not been able to allow ourselves to feel anything other than cautious optimism about what the future might hold.  It’s been hard and sad to have to hold off with celebrating, not tell extended family and the friends we hadn’t already told, and not be able to buy things for the baby (or even maternity clothes to accomodate my bump!)  Nonetheless in the moments where I feel sadness at having lost those weeks of pregnancy joy, I know there are many, many women and couples who struggle with fertility, or pregnancy, or have birth complications, and my heart goes out to them.  Through the forums and conversations with friends I have learned how many people are in this position and yet stay strong, going about their daily lives and often not feeling that they can share these stories.  It is so much more common than you realise.

We have the NHS scan and appointment with the consultant on Wednesday (11th) but in the private scan the sonographer reassured us that everything is looking perfectly healthy, so we’re confident our little baby girl will pass her last test with flying colours.

10 December – Week 19

Our NHS Anomaly Scan is now tomorrow, at the hospital we’ve been going to regularly over the last two months.  Even though we’ve had the private scan and seen that everything is developing perfectly, I’m still incredibly nervous.  Friends and family have been encouraging me to start celebrating and start telling people, but after two months’ of keeping my little bump hidden and not daring to think about anything other than the next day, and the day after that, the thought now that we will really be bringing a baby into the world in 4.5 months seems surreal.  I think my brain had gone into protection mode and not allowed me to believe that it would happen so as to minimise the trauma if it didn’t, but now all is well it’s almost like I can’t snap out of it.  I feel like I’m coaxing my brain out from behind the sofa now the storm is over – “it’s okay, it’s going to be okay”.  On Saturday my Mum and I went to Winchester to mooch around the shops and buy some things for the baby.  I came home with the sweetest Peter Rabbit sleepsuit and blanket and tucked them carefully in the baby’s drawer in the spare room (which will eventually be the nursery, and Liam’s little girl Reeva’s room when she stays too).  People tell me that April is a lovely time for the baby to be born and that we will have the most amazing summer with her.  I try and imagine what she will be like, who she will look like, if she will be stubborn and strong-willed like me or placid and unflappable like Liam (judging by our experience so far, probably the former).  I have to make my brain create these shapes to help it know that this is real, that she is coming.  I know that she likes music because she kicks enthusiastically in the cinema at the songs in Frozen 2 – she also kicks when I eat chocolate and when I’m in the bath (two of my favourite things).  I need to learn and believe and know that one day next year we will know so much more about her.  I need to stop being so scared.

11 December – Week 20

I lay awake for hours last night thinking of the day we found out that I was pregnant.  We knew for sure on the 17th August – it was a bright and sunny Saturday morning and I placed the test on the top of our chest of drawers as I waited for it to develop, not daring to look.  I’d already had a faint positive test on the Thursday but decided to wait for a weekend morning so we could see it when we were together.  Liam’s daughter Reeva was bouncing on our bed as I nodded across the room to Liam and watched his eyes widen.  As with most households, life doesn’t stop with big news, and so I had to take Bodhi out for a walk soon afterwards whilst Liam got Reeva ready.  It felt right just to have some time alone to let the news sink in, and with the sunshine streaming through the trees, Bodhi and I strode through fields and woodland trying to comprehend just how much life was about to change.  I just remember feeling overwhelmed by all of the beauty all around me and realising nothing would ever be the same again.  I felt as if we’d started something in motion and now the rock we’d pushed was picking up momentum, gathering speed, never to be undone.  I couldn’t believe there was a tiny faint heartbeat in my stomach, something that had been conceived of, a thought made real.

Today we saw our baby girl again, this time with the Fetal Medicine Specialist at the hospital we’ve been going to for our scans and tests.  It’s hard to describe what the feeling is like of seeing her little hands and feet on the screen as the Consultant ticks off all of the parts of her that need checking – healthy heart, healthy organs, healthy brain.  (She was a little pickle yet again; I had to go lunging around the hospital corridors trying to get her to move as she was in completely the wrong position to be assessed).  We have to go back at Week 28 to double-check that everything is progressing fine, but we were told today that she looks normal and there’s no cause for concern.  It still doesn’t feel real.  The truth is, I don’t think I’ll ever be able to relax, to stop that creeping feeling of anxiousness and relax into it.  I’m sure that will be true even after she is born, that I will still wonder if I really have been this lucky and spend every moment trying to keep her safe.  But we’ve got this far baby, and I believe in us.

If you need support regarding an antenatal screening, or are worried about scan or test results, the charity ARC (Antenatal Results and Choices) has a wealth of information and support.  Or if you want to speak to someone who has been through it, I am always here.