The first time I held Alice, she was dying. At five days old, at some ungodly hour of the night in NICU, she was gently placed into my arms, where she belonged all along. “Oh she feels LOVELY” were the only words I could find, and I repeated them over and over, insisting that the nurses transfer her to her Dad quickly so that he could feel this too, while she was still alive, the warm little bundle we’d worried about so intensely and loved so fiercely for the past seven months.
I’ve thought a lot about the grief a mother feels when she loses her newborn baby. I think the reason those were my words was that, however unimaginably distressing the circumstances, we are biologically primed to hold our babies in the hours and days after they are born. This is how cradling them even as they die can feel so right and so perfect, but it’s also why losing them hurts so devastatingly. Alice lay in the hospital mortuary for a whole month after we left her later that day, and at times I’d let out screams of wretched despair that it was possible for her to still physically exist, yet not be in my arms.
Alice’s middle name means “snow” in Welsh. Although originally chosen with her January due date in mind, we often think she was like a sparkling winter snowfall: everything about her was so beautiful, so perfect, and yet fleeting – there was just no way she could stay.
At 10 weeks pregnant, Alice had significantly raised nuchal translucency and skin oedema, which meant she was swelling up with fluid. We lived through eight weeks of invasive testing (an appropriate name for a giant needle to the uterus), my tummy growing rapidly as we battled all of the terrifying possibilities that lay ahead. Eventually, a missing vein in the placenta pointed us in the right direction, and we got our answer. A rare genetic condition, but good news: the fluid had vanished, the health problems associated with it were usually manageable, she was likely to live a happy and fulfilled life.
Filled with hope that we would one day bring her home, I absolutely treasure the memories of this part of my pregnancy: we were going to have two little girls! Sisters. Annie and Alice. Little friends, two years apart – waiting for Santa together, splashing around in the pool on holiday together, smiling for joint school photos in little navy uniforms.
We have chosen not to name Alice’s condition. This is because we were very, very unlucky. I don’t want anyone with the same prenatal diagnosis as we had, to find our story, because it’s not what should have happened, and although it’s possible, it’s also very unlikely.
At 27 weeks, Alice’s fluid returned, but this time, it was much worse, and classified as hydrops. Ushered into what we call the Crying Room after a scan (we had missed miscarriages before Annie – we know those Crying Rooms!), our consultant explained there was something we could try: a procedure called a thoracoamniotic shunt, which might drain the fluid from her little body and enable her organs to expand. If we didn’t go ahead, and did nothing, she would literally be crushed to death inside me.
The procedure on her left side worked. Two weeks later, we returned to repeat it on the right. If this was successful, our consultant said, he was cautiously optimistic that she could make it to a reasonable gestation and was hopeful for a good outcome.
A risk of this procedure was that my waters might break, heightened by the fact I had very severe polyhydramnios and had swollen to beyond the size of a full-term pregnancy at 29 weeks. Recovering, I felt a tell-tale trickle and sixteen hours later she arrived, born in silence by emergency c-section and whisked away to NICU, as I lay there not knowing whether my baby was alive or dead. Eventually we learned that she had been resuscitated and survived, and I was on a complete high, the kind of high you’re meant to be on after giving birth. She really did bring us such joy.
Alice lived for five days. Her condition was described as “stable” most of the time, and I never really knew what that meant, so vacillated between hope and despair, clinging to the numbers her machines showed, dreaming of bringing her home when her oxygen climbed into the 90s, then collapsing into shaking sobs when it dropped. On her fifth day, we were told for the first time that her condition was improving: she needed less help, was making a little bit of progress. I was still in hospital, and went to bed that night feeling a welcome warmth radiate through my body.
I drifted off, a kind midwife called Marta coming in occasionally to administer antibiotics through my IV and give me injections: each time I’d smile sleepily at her. She told me I was her only patient that night, and so it was a blissfully easy one so far!
Just after 2am, there was a knock at my door, far sharper than any of the previous ones. Marta came in. I smiled. I remember her words perfectly. “I’m here with Holly, one of the baby doctors”. I knew they only came in the night if babies were dying.
“OH MY GOD, OH MY GOD, OH MY GOD”. We called my husband, she helped me into a wheelchair. I yelled at her to get me there, just get me there. I heard myself screaming as she wheeled me down to NICU, the kind of bloodcurdling scream you only ever hear on TV. I didn’t know real people could make that sound – I certainly didn’t know I could. Later, as they continued to “work on her”, and I was forced out of the room for her to be x-rayed, I stepped outside of myself and saw a woman in a hospital gown pressed up against the closed door of the nursery, slapping the cold glass of the window, screaming “I want to die, this is the worst feeling in the world, I want to die!”
By 8am, when the staff changed shifts, Alice had passed away in our arms, her little fingers curled around my thumb. Nobody knows exactly why she took a turn for the worse that night, but in the time we held her we got to know her every bit as well as we know Annie, and we’re so sure she was a considerate little soul who just knew when everything was too much for her, and too much for us. A kind consultant told us during the day we spent with her that the only thing worse than watching your child die is watching them suffer. We know she didn’t want that for us, for Annie, or for herself. She chose the right time – she stayed in hospital with me so that I didn’t have to be there without her, she let our last visit be a happy one where we believed she’d make it, she let those last photos we have with her in the cot show genuine smiles of hope. And then she went.
My overwhelming feeling when I think of Alice, along with love, is pride. I’m so incredibly proud of her. She dealt with more during pregnancy and her short life than most people ever have to face. She was so little and so sweet, so brave and so selfless.
It’s a cliché to say that losing someone so precious changes the way you live, but it has, it does. For me, I’ve learned to squeeze every drop of joy out of the happier times. My heart physically tore in two: it broke, and a sharp pain that threatened to stop me breathing lived in my chest for weeks. Grief sat deep within me like a damp cold in my bones. I was heavy, I was numb, dazed, startled by daylight and furious at birdsong, feeling that I was being taunted by life.
Very, very slowly, some of those feelings began to pale slightly. This tiny chink of light can take a really long time to arrive, and my heart is with everyone who is still waiting for it. I knew we wouldn’t ever feel the same as before, but focusing on finding pleasure in the smallest things rather than the tragedy of the bigger picture is what helped us in the end.
A coffee tasted good. We managed a very short walk. We saw friends, and momentarily enjoyed their company, their humour lifting us. We agreed that if something made us feel even 1% better, we’d do it. (This has resulted in everything from joining a charity football team, Sands United, to signing Annie up to every toddler class in town and having a bracelet permanently fastened to my wrist: it has Annie and Alice’s initials as little charms, and their shared November birthstone shimmering against the gold).
The terrible moments were still with me, but less constantly, and when they occurred and I was in the depths of their awful grasp, I made myself promise that I would never, ever feel guilty for feeling happy, because anything was better than feeling so utterly wretched.
Alice brought us such happiness in such agonising circumstances. She showed us that joy and sadness can coexist, and losing her taught us that we were right to revel in the happier times she gave us, because those memories are now the most precious of all.
At times our love for Annie is so overwhelming that it suffocates us (and her probably!). I’ve been pregnant five times, yet she’s the only child we have at home. I want us to pour the extra love and joy that Alice showed us is possible into our life as a family, and I want Annie to grow up surrounded by smiles, raised by parents who know how to embrace all the sparkle life has to offer.
What a gift that is from Alice. Our precious little girl who taught us so much about happiness.
Alice has a JustGiving page, raising money for the fetal medicine unit that gave her the very best chance at life. Anyone who would like to donate can do so here