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  • Writer's pictureAmy

A Rainbow Year: Pregnancy After Childhood Cancer Loss

I'm not quite sure how I feel about the term 'rainbow baby'. In some ways (say 25%), I think it's sort of beautiful - the idea that something inexplicably magical and slightly elusive has emerged out of the shittest of weather. I also think it's 25% inadequate, for making a post-loss experience sound far easier and dreamier than it is, 25% inadequate for pigeonholing something way too nuanced and complex for generalisation, and 25% pure Hallmark cheese. There's something inherently uncomfortable about calling Rory's brother a 'rainbow baby' given Rory's age and cause of death. It seems to imply a horrible, "oh well, things didn't quite work out with Rory, so let's try again and maybe this one will live". The reality, for us at least, is more that we had the most phenomenal 7 months with Rory in our lives, so why wouldn't we do that again?

All of my embittered opinions aside, it seems that 2020 has been the year of the rainbow. There are rainbows everywhere: in windows, on doors, on balconies, on clothing, on billboards. It couldn't have been a more appropriate year to fall pregnant with a 'rainbow baby'. We actually fell pregnant just before lockdown, before all the rainbows appeared, but they seemed to be bringing a message home. And thanking the very institution that gave so much to Rory. So maybe I'll shut up and just enjoy the rainbows...

There's a lot of writing out there about rainbow babies with regards to miscarriage and stillbirth, although arguably it's still not spoken about enough publicly - particularly from the dad's point of view. I have friends who have experienced miscarriage or infertility struggles and it's much more common than the media implies. As with countless things in life (sigh) it's yet another thing that the powers that be keep quiet about; baby loss doesn't quite fit with our First World utopia. We're either made to feel gently alienated if it happens to us, screaming into this void of judgemental silence, or it's swept under a terrible rug, where mental health support is inaccessible and we're expected to stick on a "brave face" and carry on. Even less spoken about seems to be having another child after losing one to cancer, and despite lengthy searches, I can't find any helpful writing about having another child having lost a baby to cancer. So here's a start to something I hope might be helpful to someone, somewhere.

We knew as soon as Rory was born that we wanted more children. Contrary to what some may expect, his diagnosis and death didn't change this. One of his neurosurgeons told us early on that having a child was inevitably like a coin: you cannot have the joy and bliss of loving a child without simultaneously equalling that joy with the same potential for devastating heartbreak. But as parents, you embrace that risk, right? You just keep investing that love and hope that you never need to catch sight of that heartbreak on the other side of the coin.

As soon as we lost Rory, we had a few weeks (honestly, that was all...) of pondering whether it was too soon to start trying for another child. Our hearts wanted another baby straight away, but our heads knew that they had a lot to process. Perhaps taking some time was sensible. We're relatively young as far as the modern scale of conception ages go, so we weren't too concerned that our years would stand in the way of our fertility, but my parents had suffered a long and painful battle with infertility and I had always assumed that I might have inherited this in some way - Rory could just have been a stroke of luck. Having jumped on Google (terrible idea) as soon as we started talking about a second child, I also encountered article after article about secondary infertility and worked myself into a real frenzy, certain that this would happen to us. If the unbelievable worst could happen and we could lose Rory, the world could definitely continue throwing us those kind of punches.

After a long chat with my psychologist about when would be appropriate to begin trying for a sibling for Rory, I concluded that the answer was actually quite obvious. Time wasn't necessarily sensible at all. What good was time going to do? Allow us to "get over" losing Rory? We will never, for the rest of our lives, get over losing Rory. Our journey with grief is lifelong. If we both knew we wanted another child, what were we waiting for? There would be no moment at which we could announce, "OK, we've processed that bit of heartbreak, let's move on!" and as long as we were physically ready, now was as good a moment as any. If anything, hanging around for some defining moment to arrive at which we should start trying was a waste of precious time - as I keep banging on about, Rory (and his Grandma) had shown us with painful clarity that life is too short.

We were lucky that Rory's pregnancy was very unexpected (that's for another post...) and the idea of actively trying to conceive was pretty alien to us. I had expressed milk until the day Rory died, and a little bit beyond in order to gently slow my body down, but that meant that my hormones were still all over the place. And in theory, breastfeeding is a natural contraceptive (although don't take that as read, kids!) so I should have been expecting a slow start to conception. However, my heart and arms were so, so desperate to be filled with a baby that when I got my first period since Rory at the end of February, I was devastated. I convinced myself, accompanied by many eye-rolls from Matt, that we were encountering secondary infertility and we would never have children again. Despite my parents' struggles, I have never quite appreciated first-hand how heartbreaking the possibility of infertility can be. How couples face that unwelcome period month after month is beyond me. My heart goes out to you.

But I was ridiculously lucky to only experience that feeling once. On Mother's Day, around about the time I was expecting a second period, I started feeling cramps. Based on my experience with Rory, I knew this either signalled a period or implantation and held my breath as I went to the toilet. There was no blood. And there was no blood for the next few days either. I became that person the younger, greener me never imagined I'd be, counting the days until I could take a pregnancy test. And there it was - Rory had a sibling on the way.

We spent the next 8 weeks in an anxious haze, not fully believing that this pregnancy was real, expecting a miscarriage any moment, and trying not to invest too much hope in it. This was all compounded by Coronavirus, lockdown and maternity services being particularly overwhelmed and inaccessible given the circumstances. The 12-week scan arrived and I sat in the waiting room and cried. I was so sure that the sonographer would tell us there was no heartbeat, or no baby at all. It was also the first time we'd been back in the maternity hospital since having Rory; that waiting room was full of happy memories, naivety and excitement. There were couples all around who were that version of our former selves; excited and optimistic and full of the anticipation of having a baby. I felt like shouting at them to face the reality: "Your child could die of cancer. You could have this beautiful baby you're so excited about and then lose it within a year. Didn't think of that, did you?!" Obviously I didn't shout this. A) that certainly isn't the reality, b) I'm not a dick and c) I had the self-awareness to recognise that this was a vindictive, grief-fuelled monologue, best kept internal.

The scan was absolutely fine. We had one bumpy moment (caused by Covid) wherein we weren't allowed to handover any notes marked with a very clear "WE LOST A BABY TO CANCER" and ended up explaining over and over again to each medical professional why I was crying and why we were so nervous. As soon as the sonographer heard this, she was brilliant - she told us within literal milliseconds of the probe hitting my belly that there was a heartbeat and I honestly don't remember hearing her say anything else, I was that relieved. The next 8 weeks were fine, the 20-week scan was all good (apart from Matt not being allowed to attend, which I think was harder on him that it was on me), our consultant-lead care began and we're now at 28 weeks.

I would love to say that this pregnancy has been enjoyable so far, but it hasn't. It's been physically great! My body knows what it's doing - I've expected every wave of nausea, every ache and every muscle separation (fun). Mentally it's been really difficult. I imagine that this would have been the case whenever we fell pregnant again, whether 3 months after losing Rory, or 3 years. More than anything, we're angry at having lost the innocence we so blissfully owned before Rory's diagnosis. Baby-growing should be a time of joy and anticipation, but growing this baby is just plagued with anxieties. It feels foolish to get excited about anything, for fear that it could all go horribly wrong. There's no comfort in thinking that lightning won't strike twice, because we've learnt the hard way that life doesn't work that way. Lightning strikes whoever it wants, whenever the fuck it wants, however many times it fancies. However many paediatric oncologists tell us over and over again that nothing we did could have caused or prevented Rory's cancer, it's impossible to accept. The rational portion of my mind completely understands that this is the case: countless Gaviscons didn't cause Rory's tumour, nor did the odd glass of wine I had whilst breastfeeding, nor did the wanky biotic tablets I took (GP recommended...) to try and stave off the relentless third trimester thrush. Sometimes I worry that perhaps it was caused by us living in a city centre, surrounded by fumes, but then I think that there are plenty of other babies living around us who don't have cancer, and sadly, many children who live rurally who receive a cancer diagnosis. I know, rationally, that the oncologists are right. But the closer we get to this pickle's due date, the more the maternal portion of my mind takes over and instructs me that I need to do ANYTHING possible to protect this child. I cannot reconcile the idea that I am powerless to protect this child from cancer.

The other giant shadow looming over this pregnancy is the thought that Rory should be here. This is our second pregnancy; naturally we should have a toddler stumbling around to distract us. A toddler to teach about having a sibling, to put his ear against my tummy to hear his brother bumping around. Everywhere we go, we anticipate someone asking whether this is our first baby, almost daring them to ask just so we can wax lyrical about Rory. We really hope that this little one will have the best of both worlds: we know how to parent a baby, we've done it before, but we don't have an older sibling around to share our attention with - much as we wish that we did. We can't seek solidarity with first-time parents, nor can we find anything in common with second- or third-time parents. Everything about this journey is unpleasantly bittersweet.

This all sounds terribly gloomy and negative, but I promise there are beautiful things developing in our minds too. We are more grateful than ever before. We're grateful for falling pregnant so quickly, grateful every second for Rory and everything he taught us, and grateful that life has allowed us the chance to begin his best legacy: a little sibling. We have also learnt that it's impossible to jinx anything and that superstition doesn't exist. Before Rory's diagnosis I used to do things like touch wood (no euphemisms at the back please...) and make wishes on loose eyelashes. What bullshit. That was a waste of time. I used to worry that buying Rory older clothes would somehow jinx him growing up: again, bullshit. It's so liberating to realise this time around that none of that matters.

Despite Rory's tumour biopsy and various genetic tests confirming that the medulloblastoma was not caused by anything hereditary, we worry all the time that this pickle will somehow develop cancer. It seems harder to believe that he might not have cancer. But we know that our perspective is skewed by having been immersed in that world. Once you've spent time on a paediatric oncology unit, I think you're blinded by the seeming frequency of diagnoses and you forget that it's abnormal. And oncology is just one neighbourhood in a much larger city of healthcare. Residing in a children's hospital, especially PICU, you see all manner of childhood ailments, and we've had our eyes opened to the thousands of other things that can endanger a child and their family. But we keep reminding ourselves of that coin that the neurosurgeon introduced on 20th October 2019. We won't invest any less love in Rory's brother because we're scared of the heartbreak. We've had a coin land heartbreak-side-up and we know we can survive it. We will endeavour to treasure every second of his life because of everything his big brother taught us. And we will keep trying to be excited.

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