Woman's Hour - Parenting: Premature babies

Episode Date: June 5, 2019

After her identical twin girls were born prematurely at 30 weeks, writer and journalist Francesca Segal found herself sitting in what she called the “mother ship” of neonatal intensive care, all her rosy expectations of parenthood shattered. She speaks to Jenni about the diary she kept and about the band of mothers who joined her in the Mother Ship – which is the title of her memoir of the 56 days spent with her daughters in hospital.

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BBC Sounds. Music, radio, podcasts. Hello and welcome to the Women's Hour podcast for parents. Francesca Siegel is an award-winning novelist and she's now a mother with a memoir of the unexpected things that happened when she gave birth to twin daughters ten weeks before their due date. The girls were in intensive care receiving the best possible medical support but it's the women she meets in the milking shed where the women go to express breast milk for their babies who hold each other up. The book is called

Mothership and Francesca explained what was her initial reaction when she discovered she was expecting twins. I was absolutely gobsmacked. I suppose everyone must say that, but I was particularly gobsmacked because my husband and I were slightly trepidatious about having children at all. We very much wanted them, but we were just scared and slightly babyish. And our agreement between ourselves is, well, we'll just have one. So then when I had this scan and the sonographer said, there's two and they babyish. And our agreement between ourselves is, well, we'll just have one. So then when I had this scan and the sonographer said there's two and they're identical, I sort of, I laughed, really.

So how prepared were you for the fact that twins are often premature? An awful lot of people tried to prepare me, I think, to be fair. I was immediately, you're under beautiful consultant care in the NHS when you have identical twins it's a high-risk pregnancy inherently and so I was told that they might come early and I went to a talk a tamba talk about twins and parenting twins and I should have been more prepared than I was but but I think I just didn't take it in. It was frightening, and I didn't listen. Now, you did actually go into labour at 29 weeks, but they were actually delivered at 30 weeks.

Now, that is very significant. Why? Why does that one number make such a difference? It's a taxonomic shift as much as anything else, but we moved from one risk level to another, really. Sort of under 30 weeks is extremely premature, and 30 weeks and above, I think, is very premature. And the outcomes are considered to be quite different in those two categories. And so it was just a number, but it was also something that I clung to for reassurance.

What risks, then, did they face? Because they were awfully little little? They weighed what, two pounds each? warmed incubators. And very premature babies face everything from retinopathy of prematurity, which is blindness, to sepsis, to necrotizing enterocolitis, which is death of the bowel. And their immune systems are completely unprepared for the world. You became really quite a medical expert on all of this, didn't you? Well, one sort of had to. I mean, I wish someone had told me at the beginning, though beginning that one doesn't have to be an expert. That was something that I didn't know. I was very frightened by the terminology and the jargon. And because I wasn't able to mother my children, I felt they needed medical care, which of course they did. But I sort of also felt I should have to provide it. And so I didn't say, what does that mean? mean can you explain and I wish I had. What was your first sight of them because you didn't see them immediately? I didn't meet my daughters the day they were born actually they were delivered around 5 p.m. and I had a whacking great dose of diamorphine for which I'm extremely grateful and I had to attempt expressing milk for them almost immediately

after surgery, expressing colostrum by hand, which was an almighty failure because my body was as unprepared as the rest of me. And then I fell asleep and I didn't wake up till four o'clock in the morning. And it was then that I went down to the intensive care ward and I saw them for the first time. So what do you remember of your first sight of them? It was sort of otherworldly. The ward was dark because it was 4 o'clock in the morning, and it's often dark to protect their eyes, and they were bathed in this sapphire light for jaundice,

and they were tiny, tiny doll-sized humans, half-humans, in eye masks to protect them from the light with masks over their mouths to help them breathe um their skin's too fragile for clothes so they were naked except for these tiny nappies um and it was like i felt i was intruding they weren't ready what was it like though i mean you mentioned trying to express colostrum at the outset, but then you have to go on trying to express milk 10 weeks before your body would have expected us do it. An incredible midwife came and very tenderly and also firmly showed me how to hand express, which is agonising, particularly at the beginning. And we were all just told, this is one of the only things you can do, but only you can do it. And it was also empowering to be told that there was something, there was a way in which we

could mother our babies, and that was to feed them, even if not directly. So we were all ushered into the milking shed, we called it, the expressing room. And actually, however much of a torment the expressing became, the regular sort of two hourly expressing, that was where these incredible friendships formed. And these women met and were able to support one another through this extraordinary unexpected start to motherhood. It's the kind of experience isn't it with other women if you're in that kind of situation where every barrier just goes down there is no shyness there is no embarrassment you will just pitch in. Instantly it was like no other experience I've ever had there was an absolute absence of cattiness and just pure support and solidarity and sisterhood and a sense that we were a unit

in battle, really. Now, both your girls did develop life-threatening infections. What happened? It's almost inevitable, I think um in long-term hospitalization however extraordinary the care and their care was extraordinary on the nhs um that it's it's cannot be a sterile environment and so and babies do um contract infections and you don't necessarily know where they've come from and it's immediately and instantly terrifying. And it might just have been someone's tiny cold who passed through. But when babies are unable to breathe alone and are on oxygen, then it can be deadly almost instantly. Now, you said that producing milk was the only thing you were really able to do to care for your daughters because they had to be so isolated. At what point was it possible for you to cuddle them, which obviously they benefited from, and feed them yourself?

Those two things were very, very different times. We were able to hold them, I think it was day three or day four. An incredible nurse said, would you like to hold them and we were not allowed to lift them ourselves they have rice paper skin and all these wires and cannulas and needles going into them and so a layman can't lift them you need an expert to deliver them to you but we could lie back in a reclining chair and have them delivered to your naked chest so you were skin to skin and that was just one of the most unbelievable healing experiences I think for me and for the babies to be able to hold them. Why healing? I mean obviously I've read your book and it seems to be the moment where they connect with you as you connect with them.

It was a restoration of a sense of we had been ripped so far asunder and they from one another also and to put us back in contact at a time when they should have still been inside my body just felt like a tiny setting right of this enormous wrong now this titled the mothership i presume even though the staff were absolutely amazing well most of them were there's's always one, isn't there? Not quite as wonderful as the others. But who are this group of women and what did they do for you, the ones you met when you were milking yourselves? They were the long-term mothers on the ward,

so people whose babies were there for more than just a day or two days, although I should say that even a day is too long to have one's baby in intensive care when it's not what you expect but there were a few of us a core crew of us who were there for weeks and weeks who became almost immediately like family in a way that I can imagine only sort of extreme war and other circumstances can pull people together you know a soldier's battalion we sat side by side half naked expressing milk for our babies and and expressing ourselves to one another and they just became they are still treasured treasured friends without whom I can't imagine my life because we were just brought together in this extraordinary circumstance and they were funny and raucous and outrageous under these incredibly difficult

circumstances and we carried one another through. What was it like for the fathers during this time? Very difficult and very different. Most people had two weeks paternity leave and had to go immediately back to work so we're trying to live in two worlds at once. And I do not envy that, having to have one foot in the real world and another foot in this hospital life. And also they didn't have the milking shed. I would come out and I would say to Gabe, you know, ward rounds at 10 a.m. in our room. And this is the doctor we should try and talk to if we want this. And he'd say, how do you know that?

I'd say, well, they told me in the milking shed. One of the other mothers told me. Or if the girls were having a procedure, I'd say, don't worry, I'll ask someone later. And he'd say, but when do you see the doctors? I don't know. I don't need the doctors. I've just got the other mums. You say you tried not to be too demanding with the staff, honey, not vinegar, you described yourself as. And then a much younger mother Kanisha was much more demanding which is the better approach oh I think I can say without hesitation that Kanisha's approach was the better one to take I was craven and frightened and I wanted everybody to like me and um and that isn't actually in fact how you parent how you best parent your children it's not how you get the best care the care was incredible and and we were cared for equally but also people

are busy and tired and forget things and you do need to be an advocate for your child who's not able to advocate for themselves and i learned from kamisha she taught me a huge amount about how to be a mother lion which was what my children needed. Now as the due dates approach when the baby should have been born it's a difficult time for you all, why? It was, I think one couldn't help but envisage how things should have been and I for one was not very good at saying that isn't how they are this is the real world.

I spent a lot of time imagining how this due date would have been and the normal quote unquote birth I had expected. And it was actually Kamisha again, who really showed me a more grown up way to be because she saw her daughter's due date as her birthday. And she had a party and a cake and a little tiny frock for this tiny little baby and it made a beautiful memory of something that I was grieving and her due date came first and I thought right I'm going to pull my socks up and I'm you know this is how this is the way to be. And how are A-Let and B-Let which is what you called them initially now Celeste and Raffaella

how are they doing now? We have been incredibly, incredibly lucky and they are doing beautifully. They're three now and they spend a great deal of time pretending to be dinosaurs. And I am just grateful every day. I don't think I will ever lose my gratitude that they are here and that they're well. Francesca Siegel, thank you very much indeed for being with us. And the book, as I said, is called Mothership. On the question of premature babies, someone who didn't want us to name her said, I'm transferred back to 1989 when my twins were born at 29 weeks, weighing in at just over two pounds each.

They were named Tate and Lyle by the nursing staff as their weight was equivalent to a bag of sugar each. I too am a Francesca and had no sight of my babies for the first few days of their lives as they were rushed into incubators in a London hospital whilst I recovered from a c-section. Your item has almost inspired me to put some recollections down on paper in this the 30th year of my children's lives, if only to encourage other parents that there is hope when twins arrive so dangerously early. Wendy said, listening to you today brought back memories of 35 years ago and the support from the mother's house at the Royal Manchester Children's Hospital. My son and

I were there for 13 weeks and I couldn't have got through without the support of those women. And Anna said, amazing to hear this woman speaking with such honesty and openness. I was lucky in that my twins were not premature, but so much resonated with me, the milking and the not being demanding, the things I wish I'd known. Very best wishes to them all. Don't forget we really like to hear from you and follow up the ideas that you've suggested to us about some of the difficulties, pleasures, delights of being a parent. Do let us know, you can email us or of course you can send us a tweet if you have an idea that you'd like us to discuss. From me for today, bye-bye.

I'm Sarah Trelevan, and for over a year, I've been working on one of the most complex stories I've ever covered. There was somebody out there who was faking pregnancies. I started, like, warning everybody. Every doula that I know. It was fake. No pregnancy. And the deeper I dig, the more questions I unearth. How long has she been doing this? What does she have to gain from this? From

CBC and the BBC World Service, The Con, Caitlin's Baby. It's a long story, settle in. Available now.