What It's Like To Be Pregnant With A Brain Tumour

In March 2018, I finished 18 months of treatment for a brain tumour – including surgery, radiotherapy, and 12 cycles of chemotherapy. In March 2019, I’m having my first baby.

I wish I could say that finding out I was pregnant was utterly joyous, but the truth is it’s been much more nuanced than that. Initially, there was shock and disbelief, then hope and excitement followed. At first, my family and I were unsure whether going ahead with the pregnancy would be supported by my team of specialists, and starting those conversations was terrifying.

Doctors don’t always agree on things. The first oncologist we talked to was confident that pregnancy poses no risk in terms of tumour progression. Others say they are aware of small amounts of anecdotal research potentially pointing to an interaction between hormones and tumour cells. Ultimately, what this pregnancy will do for my health and the possibility of my tumour progression remains an unknown, but it's a risk my husband and I are willing to take.

Once doctors gave us the all clear, so to speak, it was time to start getting our heads around it.

The pregnancy has quickly taken over in terms of my priorities (hey, cute baby stuff!) but I don’t feel as though I’ve been able to sail through it like I might’ve once dreamed. It’s more complicated, and there have been lots of things to consider, like managing my epilepsy (a result of my tumour), reevaluating the future, and working on trusting my body again.

At 24 weeks pregnant, I had an MRI scan to check on my tumour, to see if it had changed or grown. Acutely aware of the potential impact of any negative findings on my unborn child, it was unsettling and scary. Thankfully, the results were good, but plans are already afoot for another review after my baby is born. Those things may take a back seat for a while but they never fully stop.

Living with seizures means I’ve had to think about how I’ll cope while looking after a newborn. The triggers tend to be lack of sleep and overexertion, which with a baby will be unavoidable, especially in the early days. From a safety perspective, I’ll need to be mindful when holding and feeding, since during a seizure I can lose the use of my left arm.

My medication regime is made up of three anticonvulsants. And although individually none of them is thought to be harmful in pregnancy, being on a single drug therapy is preferred. This is because each additional drug presents a slight increase in the risk of foetal abnormalities. It’s a balancing act, and the prospect of me having seizures is a greater risk than any issues relating to the drugs. I’m signed up to the UK Epilepsy and Pregnancy Register which aims to help doctors assess the long-term safety of different drugs used to treat epilepsy and better inform decision-making. I’d encourage other women in a similar position to do so too.

Over the last six months, as time has passed, the focus has shifted from my brain to my body which is growing a baby. It has been quite challenging to put faith in it. In some respects, I feel stronger, but I also feel it has previously let me down.

During my brain tumour treatment, I relied on the skills and expertise of specialist clinicians, and then on radiotherapy and chemotherapy drugs to do their thing. My role was to cope with it mentally (along with the side-effects) and get through the process. Now, it’s all down to me and feels like quite a big responsibility.

Perhaps unsurprisingly, I’ve found myself hyper aware of all the things that could go wrong and am extra vigilant, stringently following the 'rules' – from avoiding alcohol and cutting down on caffeine, to steering clear of retinoids and bikini waxing just in case. Problems I experienced in the first trimester – including a threatened miscarriage – have exasperated my fears, leaving me anxious about being far away from the hospital, while counting down the days until the 20-week anomaly scan.

Recently, things have settled down and I’m beginning to feel more confident. That said, I don’t think I will fully relax until I’m holding my baby in my arms.

I hadn’t realised how much I’d stopped planning for the future but since my diagnosis, somewhere along the line, I transitioned to living from scan to scan, in three-month blocks.

Having a baby has forced me to confront this and doing so has been strange. Any attempt to forget the uncertainty around my condition is unrealistic, but I am now in a place where I can imagine a future with a family. Maybe it’s the push I needed.

I’m watching in awe as my tummy expands – a physical reminder of how strong and resilient humans can be. It still feels like a little miracle.

I hope to approach motherhood in the same way as my illness: that is, to focus on being an individual and mum first, and someone with a brain tumour second. I’ll also be trying my best to savour every sleep-deprived minute.