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Shema (UK): Holding onto hope through grief

Shema (UK): Holding onto hope through grief

14th April 2018
“Grief turns out to be a place none of us know until we reach it.”
― Joan Didion, The Year of Magical Thinking

June 8th 2017 was a gloriously sunny day in London. I was getting ready to go to Italy. Our last
holiday as a couple before our baby arrived. Our ‘baby-moon’.
Then the unimaginable happened.
At 21 weeks pregnant, my waters broke on the tube and our son had to be delivered to save my life.
We knew he’d be too young and too tiny to survive. After a 48 hour labour and strung-out on
pethidine, I couldn’t find it in myself to hold him. So he was tucked into a cot in the corner of the room. Silent. There’s nothing quite as heartbreaking as a delivery room that falls silent after a baby has been born. I curled up into a ball on my hospital bed, wishing I could be swallowed up whole.
The death of a child is one of life’s most profound losses. It isn’t easier when it happens earlier in your journey as a parent. You can’t measure love in minutes, hours, days, months, years. Love is just love. The death of a child upsets everything you take for granted about the natural order of things. You realise that there is no natural order, and the world forever becomes a dangerous and uncertain place.
Altair (Arabic for flying eagle, and also the brightest star in the Aquila constellation) was our miracle baby, conceived after three years of infertility and several gruelling rounds of IVF. We later found out at his post-mortem that that he was absolutely perfect (of course I knew that the first moment I held him). I have an extremely rare condition that meant my immune system attacked him. On a fundamental level, I was not able to protect my baby. The guilt of this is sometimes unbearable.
This condition will almost certainly come back in future pregnancies, leaving me at high risk of
further stillbirths.
I’m hugely proud to be Altair’s mummy but I also know that I don’t want my only experience of
motherhood to be that of a bereaved mother. So how do you hold onto hope in the face of such grief? How do you find a way to pick yourself up and keep trying when life has dealt you such a terrible hand?
The unimaginable happened.
It’s true that you don’t know grief until you reach it. Grieving my son and my possible future
pregnancies has changed me. I’ve been a doctor for twenty years, and, like many doctors, I’m
someone who thrives on taking control of a situation. This has all fallen away. Instead, I have learnt to dance with uncertainty, shuffling clumsily at first but learning how to step alongside it more confidently. I’ve found a sort-of-peace with not knowing how this will all pan out, and am beginning to realise that it is in this deeply uncomfortable place that something magical happens. You start to live and breathe again.
I have tried to offset this uncertainty by learning as much as I can about my condition (Chronic
Histiocytic Intervillositis, or CHI). It affects less than a 1000 women worldwide and is very poorly understood. Women with CHI often end up having multiple stillbirths. An almost incomprehensible catalogue of losses. So many silent delivery rooms.
I’m stubborn by nature. Those who know me well, know that I’m not good at not getting my own way. So I emailed every expert in the world, and am now under the care of two brilliant specialists who are happy to trial a new drug regimen with me if I manage to get pregnant again. They are giving me confidence in my body. In turn, I give my blood to help them unravel the hidden, and often cruel, intricacies of the immune system in pregnancy.
Throughout all of this I have been lucky to be wrapped in love. From friends, family and most
importantly my husband, who has held my hand firmly along this road. One of the most life-
affirming things to have come out of the past year is the blossoming of new friendships. You would not expect that the aftermath of soul-changing loss would be when new friends would walk into your life. But that’s what happened. I’ve forged deep and enduring friendships with amazing women who’ve experienced infertility or baby loss, often both. After years of writing about the power of peer-support in maternal health (ironically one of things I research), here I find myself knowing it for the first time, first-hand.
The unimaginable happened.
I write this in a beautiful sun-dappled courtyard in North Cyprus. This morning I had an embryo
transfer after my 6th cycle of IVF. I choose to live courageously. To embrace love. To continue to dance alongside uncertainty. To hold onto hope, in the face of all the odds. Because for me, for now, it’s worth it.

Dedicated to Altair ‘Moomin’ Taylor, 10th June 2017

Emma (UK): My struggle for a second baby

Emma (UK): My struggle for a second baby

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