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Parenting premature babies: What I wish I’d known

Francesca Segal’s twin daughters were born prematurely at 30 weeks. She spent 56 days with her girls in hospital.

She’s now published a memoir, Mother Ship, about the distressing period and the women she met on the ward.

Francesca Segal was a guest on BBC Radio 4’s Woman’s Hour and she revealed six things she wished she’d known about being the parent of a premature baby.

1. I wish I’d known….that it’s OK to say you don’t know

“The first thing I wish I’d known was that it’s OK to say you don’t know. It’s incredibly disorientating at the beginning when your babies are premature and it’s a very medicalised experience, and maybe it’s not the one you had envisaged. There’s a lot of jargon and a lot of doctors and nurses talking amongst themselves.

“I felt like I had to understand everything instantly. My children didn’t need a parent, they needed a doctor really and so I felt that had to be me. With hindsight, I wish I’d been braver about saying, ‘excuse me, I’m afraid I don’t understand, can you explain what does this mean, what does this do, what is this for?’ because knowledge is power.

2. I wish I’d known….to ask to be there for the ‘firsts’

“Another thing I wished I’d known for babies who are in hospital for a little bit longer, and my girls were in for 56 days, is to emphasise with the doctors and nurses that if there are ‘firsts’, you want to be there for them.

“We had incredible care in the hospital and I adored the doctors and nurses but I remember coming in one morning and my daughters, who had been naked until then because their skin was too fragile for clothes, were suddenly dressed in baby grows. The night staff had done that. What they thought would be a lovely surprise for us, was devastating to me because I felt that was something a mother should do. I wanted to be the first person to dress my children.

“I wish someone had said to me, ‘tell them what you need’, ‘tell them if there are firsts you want to be there for.’”

3. I wish I’d known….how invaluable the other women on the ward would be

“Another thing I wish I’d known, although it became clear quite quickly, was that the other women on the ward were the greatest resource.

I’ve been lucky enough that a few of these women have become now lifelong friends.

“People are in a lot of pain and frightened and they may not look very approachable, but actually reaching out to the other mothers on the ward and connecting is the most powerful resource, both for knowledge and for solace. These are the people who really understand and recognise and are there for you day after day.

“I’ve been lucky enough that a few of these women have become now lifelong friends. The Whatsapp group that has survived all of our time in hospital is invaluable, as invaluable to me now as it was then.

“Reach out to the other parents and use them because they will be the ones to tell you who is the nicest doctor, which nurses to ask if you want something special, where to get a cheap coffee around the corner.

“It’s that friendship group, that support group is invaluable in a way that I could never have imagined.”

4. I wish I’d known….how to talk to babies

“My girls were my first children, I wasn’t a mother until I had them, so I didn’t really understand how to talk to the babies.

“We were told over and over that what they needed was our voices but I didn’t know what to say to them. They were very tiny and asleep, and I was quite self conscious.

“Lots of people I saw (and I did the same thing) sat and read children's’ books to them but you’re there for many, many hours and it’s very boring.

“When I got more confident, I started to read to them from my Twitter feed and from whatever newspaper I was reading or the novel that I had on the go because they didn’t care, they just wanted to hear something familiar and often on harder days in hospital when they couldn’t be held, a parent’s voice is the only thing you can offer.

“But not to dement yourself with children’s literature I think was something I wish someone had said to me. Whatever you’re reading is fine with them.”

5. I wish I’d known….that I needed to take care of myself

“This should be obvious but it does bear repeating: take care of yourself. It’s like that thing on an airplane. You have to put your oxygen mask on first before helping others.

It’s like that thing on an airplane. You have to put your oxygen mask on first before helping others.

“Lots of the mothers are physically feeding their babies, expressing milk around the clock, exhausted, you may have other children at home to take care of. If you collapse, everything collapses.

“So to take the time and the effort to take care of yourself as well as to focus your energy on other people. I think it is really, really important, particularly if it’s a long haul. Actually, a week can be a long haul, three days is too long to have your baby in intensive care if you weren’t expecting them to ever be there. Take the time and effort to take care of yourself.”

6. I wish I’d assert my parental role

“I was waiting for someone to give me permission to take ownership of my children and I didn’t need that permission from somebody else, I needed to seize it for myself.

“I wish someone had said to me, ‘these are your daughters. You might not be their primary carer right now but they are your daughters, you have a right to assert your parental role, to ask questions, to ask a nurse even if she’s busy, to show you how to change a nappy when there are cables attached to your baby and to ask very quickly if you’re allowed to feed them, even if they are being fed through a tube’. To assert as much parental responsibility as is practicable under those circumstances.

“It’s something I had to learn as I went and I wish that somebody had said to me, just because you can’t take them home doesn’t mean they are not your children.”

Francesca Segal with her husband and twin daughters Celeste and Raffaella

“My girls are doing beautifully now, we’ve been incredibly lucky and I’m grateful for it every day. They are three years old now, they are funny and bonny and mad and spend an awful lot of time pretending to be dinosaurs.”

“I will never forget their beginning and I’m just so thankful that we’re here.”

More information and support is available via the NHS.

Francesca Segal is on the Woman's Hour parenting podcast this week.

You can listen to the podcast here or you can download it on the BBC Sounds app.