Q&A with author Francesca Segal

Q: What was the most challenging thing about having twins on the neonatal unit? - Marie, Bristol

A: I found myself very torn between the two babies, with attention constantly straining between them. But I realised very quickly how incredibly lucky I was that both my twins had survived, and tried my best to focus on that when I was feeling particularly demented by it. It was definitely the divided responsibility I found tricky – if one began to cry while I was having skin-to-skin with the other in a chair on the far side of an incubator and there was nothing I could do. Our hospital also didn’t permit them to share a cot and I found that very difficult, as I wanted them together. I put them side by side when I was there, but I felt they would have been happier sharing.

Q: What moment scared you most while your daughters were in neonatal care? – Amy, Derby

A: I think it was the unexpected setbacks that I found the hardest, rather than the difficulties that were more predictable. I began to feel I had a sense of what our journey might look like and that would calm me, and I’d start to feel I could count down towards going home, and then something like an infection would come along and I would feel winded by it. Reversing developments – going back on oxygen when we’d weaned off it, for example, would knock me very low.

Q: My husband and I are currently on the neonatal unit with twins of our own (born at 26 weeks). It has been hard for us to communicate since our arrival and I think he is still in shock. How did you and your partner maintain a good relationship after your twins were born? – Rachel, Reading

A: It is incredibly difficult. I always think of that announcement on the plane – always fit your own oxygen mask before assisting others. Obviously that doesn’t apply in the throes of a neonatal crisis but in the longer term slog through SCBU, for example, it is vitally important that you take time to talk to one another, not least because you are probably processing and responding to what has happened in very different ways and that can be difficult in itself. It takes time to come back together.

My husband was primarily concerned about me when our girls were born, and I remember being very angry with him because I felt he wasn’t focused on the girls. It was much later when I came to understand that his had been a slightly different trauma – he thought I might die when I was haemorrhaging, and he was recovering from that. He would be the first to admit that he has taken much longer to process a great deal of what we went through. Also, being forced back to work so quickly means that fathers have to be “fine” almost immediately, and that can feel very difficult. You are just having such wildly different days, a mother on the ward, a father at work. I remember one of the nurses sending us out for dinner on our anniversary and I was so resistant to it at the time but things like that are so important, not just for anniversaries in fact but for just trying to piece yourselves back together as a couple. It is easier to find time alone together with babies on the neonatal unit than it is with newborn twins at home! If anyone but a fellow mum or a nurse had said this to me I would have decked them but… you have great babysitters, now, in those NICU nurses! Every now and again it’s important to use them.

Q: Do you have any advice about how I can start a conversation with the other parents in our daughter’s room? I don’t want to bother them! – Misbah, Bradford

A: So much of this depends on the layout of your rooms, the layout of the expressing room, and what is happening with other people’s babies in that particular moment. If you are in the parents’ room or the expressing room then I find food is always the best – offer someone a biscuit or some chocolate, and usually you will get a response.

And ask about the thing they probably most want to talk about – how’s your baby doing? How many weeks were you? How are you feeling? What’s her name? There are always one or two people who really, really don’t want to talk and it becomes clear quite quickly, but most people are bored and lonely and longing to connect. So don’t be put off if someone isn’t responsive when you try – you might have caught them at a bad moment or on a bad day, and find they are in a different space next time you see them. But somewhere in that ward is another mother who would love to connect with you, I promise. And it’s so incredibly brave of you to reach out. Inevitably one is aware of what is happening with the other babies around you so a simple, ‘How is she doing today?’ might be enough. Or even just introducing yourself – Hi, I’m Misbah. To a woman who’s been called nothing but ‘Mum’ for days, the chance to say her name might be a relief. Good luck.

Q: Do you have any advice about what to eat? Not sure how much more hospital restaurant food I can take! – Athena, Glasgow

A: God, it’s grim, isn’t it. I ate box after box of oat cakes because oats are supposed to be good for increasing breastmilk and they’re sort of easy (tasteless) nutrition. I also lived on those microwavable Heinz baked beans snap pots. Is there someone you can draft in to cook for you? There’s usually one or two people out there saying, ‘What can I do?’ – instead of saying there’s nothing, you could ask them to deliver you a shepherd’s pie in disposable foil portions. If ever there was a time to lean on friends, it’s now, and most people mean it when they offer. If not then I seem to recall a lot of protein bars and bananas. Oh! And those porridge pots that you just pour water on from the kettle – M&S do a golden syrup one that is delicious. Oats again… I appreciate this is a fairly desperate list, less advice than my own sorry menu! Bags of nuts are good (though most wards are nut free so you have to eat them in the canteen) because they’re quick energy and lots of fat. I ate a lot of meals that looked like something the Famous Five might take on a picnic – two apples, three hard boiled eggs and a tomato.

Q: We were given a “memory box” by staff on the neonatal unit when we first arrived. At first, I didn’t want to put anything in it as it felt like we were expecting our son to die if we did. Now, we (hopefully!) have a week left on the unit and I want to make sure we have everything. What things do you think are worth holding on to? – Rochelle, Isle of Wight

A: I absolutely hated that memory box, too, and I kept trying to abandon it and kind nurses would keep giving it back! One of my friends recently went back to visit and was given a nappy in the first tiny size that her son wore, and I think one of those is worth taking. I’ve kept one vest each, a prem dummy that the hospital gave us, and a hat for each of them. They look just impossibly small, now. And I took a photo of the name board at the entrance to the ward, to know the names of every person who took care of them. Also do take photos with the nurses you like! Well done – you are so nearly there, and I hope you get home very soon to enjoy your beautiful baby. Take care of yourself, too!