Luca's story - April
Updated: Aug 20, 2018
This post is best read while listening to 'Land of hope and dreams' by Bruce Springsteen.
April was when it all started. Not even two months into our second pregnancy, and we started living our own version of hell on earth. My 12 week scan with the NHS wasn't until Friday 20th of April, but I felt the urge to see my baby earlier than that. I couldn't possibly go a full month without checking on them - not after what happened last year. My biggest fear was having another miscarriage: I had no clue that so much more could go wrong at any stage of pregnancy. Talk about naivety!
My parents came over from Italy at Easter, so I thought it would be nice to go for a scan when they were here with me. I had top-level anxiety, but somehow the eagerness to see my little baby again was that much more powerful. We tried to engage in simple, calming activities on the day of the scan. We went for a long walk in a nearby park, did some shopping, and had a light lunch in Highgate.
When we arrived at the Fetal Medicine Centre for our appointment, the anxiety surged and I just couldn't calm down. I burst into another panicky cry, and entered the scan room still in tears. Once again, Daniel had to do all the talking, and explained to the sonographer that I had a miscarriage and was still feeling very wobbly about scans. I'd say 'traumatised' was more fitting an adjective. This time, the screen was facing me so I just had to look: and what I saw was a white, tiny, baby-shaped blob gently moving its minute legs and arms. I didn't need to wait for the sonographer to confirm - my baby was there, alive, and moving around. The heartbeat was strong, like a train rushing past you and scattering your hair in the spring air. I fell in love with this creature even more. I was 10 weeks and looked forward to another two weeks going by so that I could finally be 'out of the woods' and shout my good news to the world.
The sonographer gave us a few photos of our baby, and we framed the nicest one. I spent all weekend staring at it, completely engrossed in it, fantasising about that wee life. I allowed myself two days of wonder and joy. On the third day, a Sunday, the negative, intrusive thoughts crawled their sleazy way back into my very hormonal self. Daniel was away with a friend, and I decided to go for a cuppa with another pregnant woman that I'd met on a mum-to-be app (yes, if you're Italian and live in London, and all your friends have moved out of town, you might find yourself doing stuff like this). We chatted away for a bit, until she mentioned that she had just gone to the Fetal Medicine Centre for a Harmony Test - the expensive, though very accurate, private alternative to the NHS's combined test for the main three trisomies. I went back home and began examining one of the scan pictures. I've never trained in anything medical or scientific - quite the opposite, in fact - but something didn't look quite right to me.
I started researching online - screw those who tell you not to do it, because there always comes a point when you just throw caution to the wind and do it anyway. I researched two words that would soon sound more like a death sentence: 'nuchal translucency'. I'm no doctor, but I have a fairly extensive academic background and know my Latin. I immediately knew what to look for in my scan picture: a bright line under the neck of my baby. The nuchal translucency. It was there, which wasn't too much of a big deal in itself. The issue was, and my non-medically-trained eyes could spot it very clearly, that the fluid marked by this brightness was quite thick. My heart began racing. My online research became frantic. I started googling measurements, thickness, appearance, gestational age, potential outcomes. I bloody googled it all. My anxiety levels peaked, and before I knew it I was sobbing uncontrollably. I tried calling Daniel, but he was busy and didn't pick up. I was sweating profusely, and when Daniel's mum popped by to see me I instinctively hugged her and said: "There's something wrong with the baby." I showed her the scan picture, I gave her what sounded like a lecture in nuchal translucency, I asked what she thought. She held the picture for a while without saying much, but I knew that her non-medically-trained eyes had seen it too.
For the following days, I couldn't think of much else. I knew there was something wrong with my baby, and I knew I couldn't wait until the 20th to find out what it was. Daniel began worrying, too - and when he worries, that's when I start believing I'm not being paranoid. We booked another private scan, this time at The Birth Company. We paid for the full Harmony Test - we thought we might as well have as much peace of mind as possible.
Daniel and I met at the clinic - I had been working from home and he had been in his office all morning. We were both visibly nervous, but never confessed that to each other - perhaps we felt like we needed to be the stronger versions of ourselves, and not let the other one down?
The sonographer - a very polished, red-dressed Australian woman - led us to the scan room, and began the examination. I was only 11 weeks, but our baby was already looking like... a baby. Moving around, with a strong heartbeat, surely everything was fine. Except, it wasn't. My manic research around nuchal translucency helped me to discover that the maximum thickness for the nuchal fold should be around 2mm - anything above that, and it could be an alarming sign.
After a few minutes, I saw it. I saw the large, black fluid behind my baby's neck, swooshing around with each of the baby's movement, like a long ponytail. I darted a look of worry towards Daniel a few seconds before the sonographer confirmed: "I'm afraid that the nuchal translucency is a bit thick today. It's 3,9mm." I looked at the ceiling, grabbed the scanning bed with both my hands, and felt my mouth twisting in horrific fright, and my eyes blurring with a flood of tears. My nightmare had come true, my intuition was right - and my life was about to change forever.
The journey back home from the clinic was spent in tears and endless hugs. We walked across Regent's Park and took our coats off - it was a beautiful afternoon and the flower beds were starting to bloom and show off gorgeous yellows, reds, and purples. "I want to go out of town, tomorrow," I said to Daniel. He immediately agreed. We both felt this inexplicable need to be surrounded by silence and nature. The following morning, we borrowed his mum's car and drove to Wimpole Estate. I can't explain how regenerating this trip was - we walked through quiet fields, sipped tea in the sunshine, and held each other's hand all the time. I didn't know it back then, but that was the starting point in my grief journey.
On the following Monday, we were booked in for another scan at the Fetal Medicine Centre, with the world-famous Professor Nicolaides - an expert in fetal medicine and nuchal translucency. As expected, I was in tears from start to finish, while the Professor and a sonographer measured our baby's nuchal fold, which had increased to 7mm. This was the first time I point-blank refused to look at the screen - I didn't want to see our baby. I wasn't strong enough to accept that this pregnancy was going to be another catastrophic experience. I decided to stare right in front of me, at this very ugly painting with terrifying monsters - not a suitable sight for a scan room, but somehow it seemed preferable than to look at this child that I was carrying inside me. I felt incredibly guilty for this, hours later at home, and I couldn't stop thinking about my baby, desperately wanting to have another chance at seeing them again. Professor Nicolaides gave us a disastrous 90% chance that there might be "something seriously wrong with this baby" and booked us in for an urgent CVS at the Whittington. I took a few days off work to help me deal with whatever was coming, and I was genuinely prepared for the worst.
17th and 18th April
The day after seeing Professor Nicolaides, we met our consultant for the first time - the lovely Miss Paul. I was ready to have my CVS, but because of the positioning of my placenta this couldn't be performed and I had to be transferred to UCLH for a transvaginal procedure the following day. Despite Miss Paul and the nursing staff being absolutely exceptional at supporting me, everything just felt bloody unfair and terrifying. I was only 12 weeks pregnant and had already been seen by three different clinics and hospitals, and was about to be treated at a fourth one.
On Wednesday, the team at the Fetal Medicine Unit at UCLH took outstanding care of me, with Dr Pandya performing my CVS and keeping up our spirits with his positive, extremely calming attitude. While the midwives were helping me get ready for the biopsy, I heard him say: "Let's make sure that Mum is comfortable." It took me a while to realise that I was 'Mum' - to this day, I'm still incredibly grateful for those words.
The CVS was very quick and not painful at all - I was sent home soon after and told to rest up for at least a couple of days. This meant not going to see one of our favourite bands, Idles, that Thursday. I had been fantasising a lot about going to that gig with my husband and a big group of friends. We would have announced our pregnancy and celebrated by doing what I love most: singing along to our favourite songs and soaking up the incredible atmosphere that always comes with live music performances.
After three days stuck at home with my feet up, Daniel and I decided to go out of town on the Saturday - I had been feeling perfectly fine after my CVS, and looked forward to doing something that would make me feel 'normal'. We drove to Cambridge and I absolutely loved it. Spring had most definitely arrived, and we spent the day strolling across the gorgeous city centre, sneaking into the colleges, and taking stunning pictures of buildings, gardens, and picturesque alleyways. It was a delight, and my soul felt nurtured even if we now had a new worry looming over us: the CVS results.
23rd, 25th and 27th April
Mondays are notoriously obnoxious, but that Monday we woke up with a particularly distressing feeling: we knew the first CVS results would almost surely arrive. They were testing my placenta for the main three trisomies - Down's, Patau's and Edwards' syndromes - and Professor Nicolaides had given us a very high likelihood that our baby might have a chromosomal abnormality.
When my phone rang and 'No ID caller' appeared on the screen, I asked Daniel to answer. I had been through enough, my body had been through enough, and I felt like I couldn't handle any potentially bad news. A midwife from UCLH spoke to Daniel for a couple of minutes, only to ask him if he could speak to me. By then, my heart was racing so much and my head was spinning - I had managed to convince myself that our baby had something. It turned out that our baby - a boy, we found out - didn't have any of the main three trisomies. My knees were shaking and I had to sit down, while letting out the longest sigh of relief of my entire life. Still, because of the very thick nuchal fold, we were told that they would need to check our baby's heart, and were offered an appointment on the following day, again at the Fetal Medicine Unit of UCLH. When I hung up, Daniel and I kissed and hugged and sobbed for a while. We tried to talk things through in the calmest, most rational way that we could. We found ourselves hoping that, if something must be wrong with our baby, that it would be a heart condition. Most heart problems can be treated with surgery - a chromosomal abnormality can't.
On the 25th, we made our way to UCLH for yet another scan, this time with Dr Ushakov, who has a reputation for being one of the best at spotting heart abnormalities as soon as 12 weeks. We knew that we could trust his knowledge and expertise, and when he told us that he was almost certain that our baby had a heart condition, we never even questioned if that was true - we just believed him. He thought the condition was called Tetralogy of Fallot - which actually indicates a group of four different heart abnormalities, but is fully correctable at birth.
Once out of the hospital, Daniel and I shared our different reactions to another bout of difficult news. He was very worried, upset, almost shocked. I was relieved. Can you possibly understand how it feels for a future mum to be 'relieved' when told her unborn baby has a serious heart condition? Well, that was me. I sat down with Daniel and said to him that, if the rest of the CVS results came back all clear, we would be fine. If our baby 'only' suffered from this condition, he would be fine. We started googling success stories around Tetralogy of Fallot, and even found out that celebrity skater Shaun White has it, and Jimmy Fallon's baby was born with it. They both had surgeries and came out completely healthy.
A mother hoping that her unborn child had a heart condition - I never thought that I would become one.
I worked from home for the rest of the week - I was too much of an emotional mess to face a 90-minute commute to South Wimbledon, and nobody in the office apart from my boss even knew that I was pregnant and having such a terrifying time.
At five minutes to five on that Friday, my phone rang. 'No ID caller' again - it could be the hospital, with our final CVS results. Daniel wasn't there, I was completely alone, I had to pick up and deal with whatever was about to come. The final microarray results were all normal. All good. All clear. Our baby boy's chromosomes were fine. He had this heart condition, which was serious but successfully operable, and nothing else. He didn't have any other abnormality, nothing lethal, nothing that would make his tiny being 'incompatible with life'. This was the happiest moment of my pregnancy up until then, and one of the most elated of the entire 26 weeks that Luca was tucked safely inside my belly.
I called Daniel right away, while - quite literally - jumping around the living room. He was on the tube so couldn't answer, but I felt the urge to shout the good news to the world. I sent voice messages to my family and my best friends. I called Daniel's mum. I was crying with joy and relief and pride, happy tears were rolling down my over-heated cheeks. Once Daniel got home, I jumped into his arms, told him the news, and cried a bit more while feeling both our hearts beating strongly at the same fast pace. We treated ourselves to a fancy dinner out, and I even allowed myself a minuscule sip of his red wine - despite feeling more like I needed an entire bottle.
Good times were ahead of us. We were now booked in for a more thorough fetal echo the following week - but nothing could shatter our happiness, we thought.