World Prematurity Day is on 17th November 2019; it is a global movement to raise awareness of preterm birth and the impact it can have on families. WaterWipes, the world’s purest baby wipes, are proud to have partnered with Francesca Segal, author of the ‘Mother Ship', a diary of the 56 days her twins spent in the neonatal intensive care unit (NICU), and Bliss, the UK’s leading charity for babies born premature or sick. WaterWipes have helped Bliss produce a set of ten baby milestone cards that will be available free of charge for families with a baby in neonatal care, to help celebrate the milestones on their baby’s neonatal journey.
Here, Francesca talks about her own honest experiences and milestones during her neonatal journey with her twin girls. The following is taken from her diary in the early days when her daughters were in hospital (a segment that does not appear in ‘Mother Ship’):
This morning Eloise, another mum on the unit, and I were in the prime positions in the NICU milking shed; there was no one else expressing. When I came in, she was reading a very old copy of a celebrity magazine, and looked relieved to be spared any further engagement with last year’s celebrities, and their dated goings-on. Smug bastards she says, gesturing to the couple photographed on their chaise longue, a big fat full term baby beaming between them, dressed as a Halloween pumpkin. I think I’m binning this, it belongs to the hospital but I am making an executive decision. Fat babies should come with a trigger warning, in here. That child looks like it ate two of ours. How are you?
Good, I said, reflexively, you?
Terrible, she said, I am terrible, thank you for asking. I don’t know what business you have being anything else, quite frankly. I had a realisation today. We were both hunching forwards during this exchange, because one cannot get even remotely comfortable when attached to a breast pump. Leaning back risks spilled milk, and we all know how that ends. I hold him every day, and it’s been two weeks and I still haven’t the faintest bloody idea what he looks like. He’s supposed to be my son.
I like this formulation - it has an honesty to it that I appreciate, and recognise. Supposed to be, but really, property of the hospital, like the gowns, the incubators, the pumps.
It is true that we intensive care mothers don’t see much more of our newborns than when they were in utero. They are in disguise, our children, incognito, though perhaps that remains their prerogative during these weeks of negative time, when they were not meant to be here, not ready to be viewed. They wear hats and huge sunglasses; NG or OG tubes are taped to their cheeks with plasters printed with small teddy bears, but these small teddy bears are still huge, on our children’s fatless cheeks, and CPAP masks hide most of the rest. Of their faces we are left with chins, and a strip of forehead. There could be anyone under all that.
Then Lisa, another mum on the unit said, Okay, seriously. If you mixed them up, if you put ten of them in a lineup, I don’t think I’d be able to find him, I’d just have to guess and take whichever one I ended up with. I mean, she turned to me, you’ve got two. Can you tell them apart?
Of course I can. I drew myself up, haughty. Baby B is on the right.
In late September 2015, twenty-nine weeks pregnant, and with no warning, I began to bleed. And bleed. At exactly thirty weeks, I delivered my identical daughters by emergency
caesarean, and no one since has been able to explain why it happened. Just, as we say, one of those things. They weighed 2lbs each. They couldn’t regulate their own body temperature, couldn’t feed, couldn’t breathe. They had no immunity to fight infection. And so they were sent to neonatal intensive care, NICU, where they would spend the next fifty-six days. The diary of that time became ‘Mother Ship’, a record of the time I sat beside two intensive care incubators, willing my daughters to live.
Like almost all NICU’s in this country, parents were not permitted to stay on the ward. Leaving felt like a daily amputation. Each night I went home to a silent house where I would express, cry in the shower, and fall into bed for a fractured night of sleep before returning to catch the doctors on their morning ward round. All else fell away. It was winter; dark when I came in; dark when I left.
Raffaella and Celeste were, as Lisa put it, supposed to be my daughters. But I could not feed them, care for them, could not even hold them without permission. What did it mean to be a mother who needed help – not just help but supervision – to change her own child’s nappy? I first held my daughters several days after they were born. That first cuddle, my daughters finally upon my chest, was the first act of reparation after a trauma. It was a landmark moment for all of us.
It took time, and the slow and often painful accretion of experience, to understand that these girls, these magical, blossoming not-quite-babies, were my responsibility, my daughters, and my family. I wish someone had taken my hand then and said, they are in hospital, but they are yours. Fight for them, fight alongside them, stand tall and take your rightful place beside their incubators without fear of judgement, or error. Don’t hold back, and above all else, ask to be taught. In the battlefield of an intensive care ward it takes courage to admit you don’t understand, that you need teaching, that you need someone stressed and important to slow down, to explain, to help. It takes courage too, to ask a busy nurse to give you that most precious commodity of time. I first nursed one of my daughters after more than a month in hospital – the first time, as the Bliss baby milestone cards say, that she had milk without a tube. I will never forget that moment. But, I wish I’d put her earlier to the breast; I wish I’d known I could at least have let her try. It is your prerogative to ask, and the sooner you feel empowered to do even their smallest cares – take a temperature, change a nappy – the sooner your wounded heart can start, slowly, to mend. Your healing matters, too.
Francesca Segal’s memoir, ‘Mother Ship’, a diary of the 56 days her twins spent in the NICU, is published by Chatto & Windus, Vintage. For further information and to buy a copy visit Amazon.com.au.