Daisy Nelle

The Countdown to Daisy’s Cleft Repair

I woke up this morning and I just felt…blue. It was a bit like I’d woken up and couldn’t find the light switch anywhere. Fumbling around the in the darkness, trying to get dressed, feed and clothe my children, and get them to the places that they needed to be.

It took me by surprise. I wasn’t expecting it. And I remember getting home from the school run, putting Daisy down for her morning nap, and then I just lay on our bed and stared out of the window.

All I could think about was the fact that it was February. And February was the month that had been in the back of my mind for a while.

We always knew that surgery was going to happen for Daisy, just like it did for me.

When Daisy was first diagnosed, I remember my mind running away with itself in that moment. We were still in the room I gave birth in, and the midwife was examining her properly. She was born quickly and we were left for a while to try and get her to latch. And it just wasn’t working. I felt stupid for not realising what the problem was myself.

And she checked her, and looked her over, and she said: “Oh. Oh I think she does have a cleft.”

And my world stopped.

And then it started again at an alarming speed.

My mind didn’t stop.

You can’t breastfeed. She won’t be able to. What will you do? Will you express? I don’t know. I don’t know how to make formula. I’ve not done that before. Will she come home yet? No, probably not. The midwife said 11:00am. That won’t happen now will it Charlotte? No, Charlotte. No I don’t think it will. What happens next? What happened to me? I can’t remember. I was just a baby. Of course. I will have to tell Mum and Dad. Oh. Mum and Dad. They will be so sad. For her. For us. Is Mark okay? I hope he is. I can’t believe I’ve let him down like this. I can’t believe my baby is in this position because of me. I had tubes. Will she have tubes? I don’t know what happens. I need to ask. But I can’t talk properly. The midwife said something about consultants. I’m scared. She will have an operation. Maybe more? Speech therapy. Wait. She has my syndrome too. She must do. I’m so sorry Daisy.

But all that came out of my mouth was: “She won’t be able to breastfeed Mark. I’m so sorry.”

Once I had adjusted, things became much more practical. Looking back now, I am shocked at seeing Daisy struggling to breathe. And the effort her tiny body was making. Back then, my carer’s hat was firmly in place. I went about everything by the book, and I worked hard to keep my daughter healthy and well. And, in all honesty, alive.

Now, I am more attached than ever to my baby. I love her so strongly that her very presence is calming to me. I like to know what she is doing. I like to be right there. I need to know, even now, that she is okay. I find leaving her quite tough at times. I only really feel able to leave her with my parents. Just because they have done all of this before. With me.

She seems, for all intents and purposes, like your typical nine month-old now. And she is. But there are little things, like the monitor I can’t have her sleep without. The little pendulum on the screen swings back and forth and shows me, when I open my eyes, bleary-eyed, at 3:00am, that she is still breathing. And then there is the slight obsession I still have with how much she eats and drinks. She still struggles to drink as much as you’d expect of a baby her age. She has specialist bottles. She tires easily from the coordination of having a cleft palate and drinking and breathing all at the same time. And obviously having PRS has affected her feeding as well. So when she (very rarely) isn’t with me, I need to know that it’ll all be okay.

So, as I write this, her surgery is 13 days away. I keep seeing flowers and cards, and chocolate boxes, and love hearts fill the shops in my village. Love is in the air. Sometimes the sun is coming out too. And it’s all full of romance and promise. But on Valentine’s Day, she’ll be in hospital, and so will we. In fact, because of ward changes at our hospital, only one of us is able to stay overnight with her. That one of us, is me. So I won’t get to be with Mark. And I hate that. Not because of romance. But because our baby will be in a lot of pain, and so will we. And we should be together.

I am trying to make a mental list now, of what I might need to take in. Of course there are the obvious things – her clothes, nappies, her toys. But she needs to go back on a smooth diet for two weeks, and she’s going to hate it. I shall have to buy shares in Little Yeos yoghurts. And try my best to think of what she will eat. If she doesn’t eat or drink, she can’t come home. So I’m desperate for her to feel better. Because I hate hospitals. I have done since I was a child. And it’s torture for me to relive operations and procedures I once had, but from a different seat this time.

I am also worrying about her going under. I worry about the little mask over her face and if she will fight it. Only one of us can go down with her and say goodbye. And only one of us can go to her in recovery. It seems like that person is going to be me again. Mark doesn’t want to see her fight. And I think I’m going to struggle to let her go as it is.

Just the thought of handing over one third of my world, into the arms of someone else, however skilled. It’s horrible. We know that there may be issues afterwards with her breathing. We know that she might have to go to high dependency for a while, and she may need a NPA again to stabilise her swollen airway. So there is a lot of ‘unknown’ to worry about.

And what I mean by that is that I don’t know what to expect when my daughter, my baby girl, is brought back to me. I don’t know if she will have handled it well and will stay for just the one night, or if we have to stay for longer as her airway gets back to normal. I don’t know if she’ll take it in her stride, or if she will be beside herself. I don’t know whether she will sound different. I will miss her noises so much. Her gorgeous cleftie noises. Her nasal squeaks and sounds. And her throaty laugh.

She is asleep next door to me right now. The pendulum swings. I feel like she’s still safe.

But soon I have to take her to be ‘fixed’. Except she’s perfect to me. As she is.

Sometimes, I feel like the person that really needs to be fixed. Is me.

I just want everything to be okay for her now.

Because then I can put this guilty beast to bed.

For good.

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  • Reply
    1st February 2017 at 11:27 pm

    Ah Charlotte, I can’t begin to imagine what you must be going through. What Daisy is about to go through. You write so beautifully and from the heart. If virtual hugs and love and positive sentiments were enough to help you through this. Then I send them to you an infinite amount of times. Gavin and me don’t tend to do Valentines, so this year I declare it Daisy Nelle Day, filled with yellow hearts and pretty springtime daisies. I send you both a great big squishy hug and I’d like to remind you, Mama, that it’s okay to not be okay. ?? xxxx

  • Reply
    4th February 2017 at 8:59 pm

    Hi, My baby girl had her cleft repair last month and your thoughts throughout this post was me. The 11th of Jan seems like worlds away now .

    She’s also a PRS baby and we were warned that that we’d prob be in for up to 6 nights and high dependancy was likely. We stayed 2 nights, high dependancy not needed. I spent the whole time from when I know she’d have surgery with it at the back of my mind. By day three she was almost back to normal, recovery was amazing xx

  • Reply
    5th February 2017 at 9:38 pm

    Hi charlotte! This brought tears to my eyes and it’s something we’re going through too. Our little boy is also 9 month and had PRS, I also feel guilt. He has a trache fitted too due to an unsafe airway when born because of PRS. Our baby’s repair isn’t until the week of his first birthday, thats when they do it in newcastle. Daisy is gorgeous and I’m sure she’ll fly through the op. Xxxxx

  • Reply
    Laura Fell
    5th February 2017 at 11:28 pm

    Hi Charlotte! Our little girl is 7months and had her cleft palate operation 2 weeks ago. I know how terrifying it is in the build up and preparation, but we were so well looked after and our daughter, Ebony is a smiling and happy bundle again! I wrote a blog detailing our story up till the op. Copied a link if you’d like to read it! https://medium.com/@fell.matt/pumps-boobs-baby-ebony-lauras-post-3f68fba0bba1#.40719ysf4

  • Reply
    Jenny @thebrickcastle
    13th February 2017 at 9:26 am

    You are only allowed to feel guilty for passing on this syndrome to your child if you accept that every time she smiles, and every time she shows promise, compassion, love, friendship, natural talent or gift – you take the blame for that too xx
    I hope the surgery goes every bit as well as anyone could hope, and that you can manage to wait until she’s out of sight before you start crying. Love to you all xx

  • Reply
    Steph Curtis
    13th February 2017 at 2:47 pm

    Awww, Jenny’s words are spot on (as always), I couldn’t say anything better. Hoping it all goes well for her and you and that recovery is quick xx

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