Gratitude. What your parents probably scolded you for having a lack of when you were a kid; like the time you protested about the injustice of having to go to bed, or when you complained about the total lack of chocolate at breakfast. Gratitude was never something I thought would be a distinct focus in my life, not in a life and death sort of way, like I’m about to recall.
I guess I’d always been pretty grateful. I understood what it was to have things but also what it was like to not have them. We’d been fortunate as a family but also very unlucky at times and so by the time I was a teenager I knew that by having food in my belly, a roof over my head and clothes on my back, I was fortunate, lucky and rich. I was very aware of the sometimes overused and under-appreciated adage: There’s always someone worse off than you. Fast forward a few years to when I fell pregnant, and I wasn’t so sure.
I had a great job in teaching, amazing husband, lived the zero emission electric vehicle dream, travelled, and had found pretty acceptable gluten free food that didn’t make me question life’s meaning from time to time. Life was good. This gratitude didn’t apply, however, when someone demonstrated the utter inability to use their car’s indicator, or when people gave up gluten just for the craic. That bollocks just wound me right up.
We were planning to start a family, unaware that picking nursery furniture and baby clothes was going to be least of our troubles. When my I got pregnant quickly, I immediately began planning my unborn human’s nursery, name, and how they’d get into, say, Eton or Oxbridge. All the basic stuff, really. Aside from queasiness for the first couple of months, the pregnancy was going well but that went downhill rapidly about three months in when all the big and really important stuff started happening, like scans, measurements and appointments. It wasn’t until then that I’d come to rely on gratitude, down to its granular level, to get me through some bleak and gut-wrenching days.
I’d like to note that at this point that none of what I’m about to say is meant to be interpreted as being oversimplified, condescending or naïve, this is just my experience of practising gratitude and experiencing a traumatic pregnancy.
A few days before our first scan I was rushed to hospital in intense pain and bleeding, the type you don’t want when pregnant. Luckily, it was a scare and we never found out what caused it so in our minds the panic was over, and we were ecstatic, looking forward to our very first proper scan. A few days later during that very scan, the world felt like it was ending again after we found out there was life-threatening fluid in and around our baby’s body, which is usually a marker for a range of chromosomal abnormalities - none of which you really want to think about or expect when getting pregnant. That day I wasn’t grateful for much as I screamed and choked in the scanning room. It was a shitty week that turned into a shittier couple of weeks and few months. Peaks and troughs were usually the stuff of textbook graphs and the exam papers that I took home to mark at weekends, not my personal life.
It turned out that the fluid in and around our baby’s body that had been picked up a few weeks earlier was severe. Traumatic severe. The severe you absolutely do not want to be confronted with when pregnant. Ever. On the one hand it was great that our baby was clear of any chromosomal abnormalities or heart defects after blood tests and genetic investigations, but on the other, had a fluid-filled sac on the back of their neck as well as something called Hydrops Fetalis, where there’s a build-up of fluid in two or more compartments in the body. It’s usually fatal when found that early on. It’s not a diagnosis as such, but symptomatic of an underlying condition so we were confronted with multiple possibilities, most of which were devastating. In fact, we were told that there was just a 10% chance our baby would survive to 20 weeks’ gestation. We were already at about week 16-17 at that point. It was grim and I was terrified that I was going to miscarry at any point and angry that I couldn’t control my body or look after the baby we loved and wanted. The prognosis and resulting options didn’t fill us with much hope. Added to that I was in physical agony with other pregnancy-related conditions and popping pain killers so strong they were a controlled substance. That’s how we spent the weeks leading up to Christmas.
I didn’t feel that there was much to be grateful for at that point. We were given the option to terminate or take an expectant approach but told that miscarriage or stillbirth were distinct possibilities in our case. We went away and considered how we’d mark our unborn child’s life. Would we be able to get footprints? That depended on the next course of action. Would a bench in a beautiful location be an appropriate tribute? Somewhere we could go, sit and remember? Would the birth be registered as one if the baby didn’t survive? What if the baby survived with a condition we didn’t know how to handle? Was it right to carry on? Would we try again, and what if I couldn’t get pregnant without something like this happening again? What if we could never find out why it was happening? How would we cope if the baby didn’t survive labour? So many variables.
By five to six months however, I was in less physical pain and able to at least think a bit more clearly. I had plenty of time as I’d had to give up work, and after endless talking, and considering the what ifs and buts, we decided not to terminate and to carry on, giving up only when our unborn child did. We prayed for a miracle and read every journal, article and piece of information we could get our hands on. I joined every group on social media platforms that might provide answers and positive outcomes. We still had no idea what was causing the fluid but knew that otherwise, the baby was structurally ‘normal’. I decided to go back to what I knew: gratitude. I couldn’t control the situation, but I could manage my headspace and how I reacted to this uncertain mess. I can’t take all the credit here, my husband’s also an eternal optimist.
So that’s what I did. From that moment on I was grateful for everything including:
· Getting another week with our baby
· A strong and healthy heartbeat
· An incredible medical team and outstanding hospital
· Giant needles piercing my belly and the baby’s chest, because whilst there was a risk of infection and miscarriage, at least we could try and get answers from extracted fluid or remove it to allow lung growth
· No chromosomal abnormalities
· No heart defects
· Getting ANOTHER week with the baby
· Getting ANOTHER month
· Not miscarrying
· Living in a developed country
· Free healthcare
· The hospital coffee shop that offered a space away from the questions and scanning rooms, on a particularly stressful day.
I realised just how fortunate we were because after weeks of scouring the internet and scrutinising countless papers, articles and websites, looking for survival stories with odds as slim as ours, we were in a relatively small minority getting to that stage in the pregnancy with something like Hydrops Fetalis. We were incredibly lucky by the time I was 7 months pregnant because we received the best news we could have hoped for at the time: the fluid that had been receding slowly for the last few weeks had almost disappeared and there was still no known cause for it but it could realistically be attributed to a slowly developing lymphatic system.
The pregnancy we’d felt we’d been robbed of for the first 7 months was allowing us precious joy and anticipation. My best friends and close family still didn’t know I was pregnant and winter did us a favour when it forced us all to wear big coats and bigger scarves. We could buy a cot! We could paint the nursery and buy clothes – what delight. All the things that were risky luxuries for us previously, we could now revel in and celebrate. We were told that there would be no guarantees during the delivery that our baby would be born without disabilities or be able to breathe, but no fluid meant we could still be cautiously optimistic.
A couple of months later and after two days of labour, failed forceps and an emergency caesarean, we were beyond excited and thankful that we had a healthy baby with a button nose and my eyes. Whilst we still do not have cast iron guarantees that in years to come we won’t be dealing with some sort of undiscovered genetic condition, our tiny miracle is a sheer joy, is meeting all milestones, and yes, you guessed it, we’re grateful. Even being woken up every two hours during the night for 4-6 months was a privilege. Our baby was alive. Not everyone gets this opportunity and we’ll never take this for granted, particularly as friends have experienced the type of heartache and loss we’d been prepared for.
To the parents and babies whose lives have been cruelly touched by Hydrops Fetalis and to those whose journeys did not end the way ours did, I extend so much love to you, during the heartache and the strife. To those currently experiencing uncertainty and trauma like we did, I hope in some small way this offers comfort.