My twin babies didn’t survive their premature birth – and I’m left to wonder why | Sara Mussa
One, two, three, four, five, breathe, breathe. One, two, three, four, five, breathe, breathe.
Lying on the cold tiles of my bathroom floor, I had just given birth to my twin son, Zakaria, at just 23 weeks and six days gestation. My knees buckling, almost falling to the floor, with only my husband to hold me upright. He said some words. I can’t quite remember, but it was along the lines of “rely on God”.
Just hearing those words was as if a switch had been turned on. I grabbed my baby, wrapped him in my arms and stumbled to the bed. My husband was frantically calling the ambulance and all we could hear was a beeping of a busy line signal while the operator tried desperately to connect us to the paramedics.
But this emergency didn’t begin in my bathroom that night. I had raised the alarm on several occasions with health professionals over the previous two days but my symptoms were dismissed. As a first-time mum, it’s unclear what are usual or unusual symptoms. So I tried to get some clarity. I was told it is absolutely normal to have this kind of pelvic pain and that it sounded like ligament pain.
The symptoms persisted into day two, so I called again and was met with the same response. In a call that lasted no more than three minutes, I was left alone to decipher what the pain meant. A few hours after that call my husband and I were delivering our precious, delicate, warm, soft and all-encompassing, beautiful twins. Alone.
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We were completely helpless and after a lengthy delay we were finally transferred to a paramedic, who immediately instructed “start CPR now”. So, with my baby Zakaria lying on my chest, using my fingers looking for the ribcage, finding the middle and starting chest compressions, we counted. One, two, three, four, five, breathe, breathe.
I told the operator, “I think I am pressing at the diaphragm.” “Move up,” she said. “Place your fingers between the two nipples”.
At this time, my husband was breathing for Zakaria and I shouted, “I cannot hold on any more! The second baby is coming”.
The operator gasped. She had just realised there were two babies. Malak, our baby girl, joined us. My husband began compressions on her, me on Zakaria. We counted with the operator. One, two, three, four, five, breathe, breathe. Zakaria was lying on my chest, I could feel his skin and the warmth of his tiny, vulnerable body. With every compression Malak was making the smallest of sounds, only audible to her dad.
After what seemed like an eternity of CPR on our own, there was a huge sense of relief when help arrived. I thought our efforts meant nothing, they were just so delicate and small. There is no way you could successfully resuscitate twins at 23 weeks and 6 days. But here I was entering the hospital on a stretcher, going in one door and my babies taken away through another. I was told “they are stable”.
Now in the safety of the hospital we witnessed teams of people fighting for our children’s care. From the triage team to the NICU department, they were all there.
Our babies fought for two days – and what days they were. We watched their personalities grow, their fingers heal and their presence fill the room. It was devastating to say goodbye.
The politics of pregnancy
We may never know if my babies’ premature birth could have been prevented but our questions over why my husband and I were left to birth and resuscitate our babies alone at home remain unanswered.
When I tried to get answers one health professional said she was sorry for my loss, however there was one thing she said that really stood out to me, “Sara you are so stoic and we were just getting to know you”.
Straight away I broke down. “Just because I didn’t make a fuss!” I shouted. It felt as if she was suggesting that my distress was not made clear enough for them to understand as they were still “getting to know me”.
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Not all women demand care in the same way but that does not mean they do not deserve it. I believe I should have been better assessed. The comments compounded the trauma we had already experienced.
Unfortunately, this is not just my experience and occurs too frequently, in particular for women of colour. In a system that boxes women in, you feel like you can never win. If you are overly vocal you are the crazy black woman. If you are quiet, you are the passive, subservient woman. So here I am. Not a flower picker or a bulldozer but a perceptive person who respects health workers’ professional judgment, and I feel that I was let down.
During my recovery I came to learn of a very difficult fact, that my experience could have been worse, it could have been fatal for me. Research shows that women of colour are more likely to die giving birth, with Indigenous women being three times as likely as non-Indigenous women in Australia, while immigrant women from sub-Saharan Africa in Australia, Canada and Denmark are twice as likely to die.
In these devastating maternal health disparities, there’s a common theme – systemic racism.
A UN report of women in the Americas, including maternal health, revealed that systemic racism and sexism in medical systems are the main reasons black women and women of colour are more likely to experience serious complications or even death.
For this trauma to stop the medical system needs to acknowledge and actively work to dismantle its systemic racism. It needs to understand the biases that blind practitioners and lead to preventable deaths and worsening illness. It needs to make room, not just for diversity but genuine engagement that listens to women, respects their concerns and ensures they are adequately informed through the process of their care.
I am blessed to have held my babies; they’re always there by our side. Grief is still very difficult and at times I know they are there, but my God do I want them here. So, whenever laughter fills the room or I hear children play, their voices are a part of the choir. Their song is so loud, anyone can hear it if they really listen to the symphony of life.
Zakaria and Malak, our blessings, continue to protect us for we know you are not too far away.
Sara Mussa is a psychologist based in Melbourne