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The best thing I’ve ever done

Emma, who is 37, has Biliary Atresia and this year celebrates 30 years since her liver transplant. Now mum to seven-year-old William and Theo, four, she shares her experiences of pregnancy and life as a busy mum.

To anyone worried about having kids post-transplant, I would tell them you’ll have consultant-led care and be well looked after. Hepatology doctors won’t quite know what to do when you’re heavily pregnant (when I was admitted before William, I went from hepatology to antenatal within four hours and you could almost see the relief on the young registrar’s face!) Take all the scans and tests you’re offered and ask plenty of questions. I have definitely found being an ‘interesting case’ an advantage – doctors have been willing to chat to me and curious to ask me questions about my history (as have many students!)

It has also, for me personally, been helpful both times that I know how the ‘world’ of hospitals works. I know what rounds are and how the place ticks – it never leaves you. And it made childbirth less scary for me – I knew it would be a clinical process, but that’s fine, because for me, that’s where the experts are. (Note: ignore the antenatal class on birthing pools and lavender – it will very likely not apply!)

We’ve been lucky that the boys are healthy after a bit of an early start for them, Theo in particular. What I didn’t know at the time is that apparently my donor liver had a genetic predisposition to Obstetric Cholestasis, which is what I had in both pregnancies, so it seems to have been a complete coincidence, rather than being related to my own liver disease. I can tell you a post-birth biopsy hurts like hell, but of course provided the needed reassurance in both cases. For us though, it meant that we made the decision not to have any more children. My obstetrician said that as my boys had been born at 36 weeks and 31 weeks respectively, it was probable that any more babies we had could arrive even earlier and then there could be huge health implications for the baby and potentially for me, plus the impact of that on the rest of the family.

I think I have gone through the same motherhood challenges as everyone else. I was advised not to breastfeed because of the immunosuppression medication I take, but bottle feeding suited us all fine. In general life, I’m very lucky that I continue to be in good health and my liver condition doesn’t impact me hugely from day to day, other than I probably get tired a little more quickly than others. My six-year-old now knows a little about my transplant, although I don’t think he has quite put two and two together about where my liver came from yet.

The pandemic proved an interesting time. We shielded carefully through the first lockdown, and we did it together as much as we could because, frankly we didn’t live in a big enough house to separate, nor would I have been away from the kids at such a confusing time – we all needed each other. We went for a few sanity walks in very big parks where we could stay away from others – even my consultant kind of said ‘fair enough’ to that when I told them the ages of the boys (four and not quite two at the time) – they were practically crawling the walls!

Since the vaccine rollout, we’ve been living life as normally as possible, while still taking precautions. We’re fortunate enough to be able to avoid public transport, I do most of the shopping at night when it’s quiet (and quite honestly, when I can do it without the kids!).

Raising kid’s post-transplant: I guess I’d give the same advice I’d give to any parent – a good support network is not to be underestimated. You are not denying your child anything by keeping life to what you can manage – they don’t need 47 extra-curricular activities as much as they need love and care and routine. A trusted friend/ parent/ doctor is better than Google. You will freak the hell out if your child gets baby jaundice, but it will (or should) take a doctor one look at your case notes to get your baby tested.

Parenting is exhausting and relentless but a thousand times over the best thing I’ve ever done.

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