Blog Daisy Nelle

What it Feels Like to Pass a Syndrome on Your Child and Moving On From It

I have wanted to write so many posts about our experience having a Stickler, cleft palate, Pierre Robin, NICU baby. But every time I start I get this weird sensation come over me and I begin to get writer’s block and I mentally dig my heels in and then I shut my MacBook and push it away from me.

I remember when I used to write a post every day sometimes. Every day. Do you remember that? I do. I don’t quite know how I had the passion for it sometimes. I certainly don’t have it now. Since the birth of my sweet little girl, I have found this is often the last place I want to come. I find making videos easier. I just grab a camera and capture. They don’t seem to ask as much of me. I can do fun things, or document memories, but here, with a blog name like I have, I have often poured out my soul into a puddle for you to read. And it turns out I don’t enjoy doing that as much anymore.

On Saturday, a post was published on Buzzfeed. About being a parent of a baby with a cleft palate. And I wrote it. I found it hard to write. I’ll be honest and admit that my first draft came back to me because I’d been to generic. And I had, on purpose. I was not willing to talk about our story and our experience at first. Not intentionally. I just couldn’t get it out of me. But I sat, one night, and worked through it. And then I was told it was perfect. The response I have had has been quite humbling. It was posted on the UK and US site, and is now on the front page of Buzzfeed Parents too. It’s had over 10,000 views. And I’ve had messages and emails to thank me for writing it.

I didn’t realise that sharing something like that was actually much bigger than me and Daisy. It was for many babies, young and grown, and their parents too. And now I’d like to try and keep doing it. And hopefully that will help me too.

Today Daisy is seven months old. And last night, Mark and I lay side-by-side in bed. Huddled together because the sheets are always cold when you get in them these days – that sign that Winter is on its way. And we were lit by the light from my phone screen, and we were mesmerised looking through old photographs and videos of the last seven months.

Now, part of me is extremely grateful that I am the capturer that I am. I have always been the type to collect memories, whether for scrapbooks, diaries, memory boxes, blogs, videos. It started from when I was tiny and it has never stopped, or faded, in fact, most likely it has gotten worse with age. I love to be able to look back. I always have done. It’s not that I live in the past so much, but I don’t want to lose what happened yesterday, because my past and my present are the only guarantees I have in life. The future remains a mystery and, one day, the future simply will not come for me. Or all of us.

However, some of the memories from the last seven months are hard to look back on because it’s like unlocking an old diary and watching old emotions flood over you and you sometimes feel as though you are drowning in them.

But every month that passes, brings us a happier and stronger baby girl. And I think that is important to focus on and remember.

As we flicked through our past last night, we watched tiny clips that we haven’t looked at in a very long time. We heard the wheezy sound of our baby breathing with her airway down her nose. And it was actually shocking to hear that sound. And see her with different eyes.

As Mark told me last night: “I find it harder to look at now than I did back then. Because I was getting to know that little baby and all of that was our ‘normal’. But looking back I see my Daisy and see her struggling and it hurts.”

And he is so very right. She was so brave. And I don’t think we realised at the time how big a deal all of this was. Of course we knew we were her carers. And we were trained in medical emergencies. And we did things we never expected to do. But, to be blunt, we brought home a baby who could not breathe on her own. And that was serious. But at the time. We just managed.

I have tried to be very open about the way I have felt. Because I think it’s important to share as much as you can, with as much honesty as you can manage. But I was very unwell in my mind and in my heart. I can’t tell you what it was that was troubling me. I can’t give it a name. But as I have said elsewhere, just because I can’t name something doesn’t mean it wasn’t there and it didn’t happen to me.

I am a brave person. I know that now of course. I didn’t before. I thought all the crying and the hiding away made me weak. But I did everything I could to make sure my daughter thrived. I wanted to do that job. I didn’t want her in hospital anymore. I truly believed that we, as a family, were better for her than any doctor or specialist. And I think we were right. But we took on a lot of responsibility at the same time.

And I think, for a while, I took my time in learning to stop being her nurse, and start being her mother.

It took me a while to stop waking up in the night and panicking – expecting to see her sats monitor shining numbers at me in the darkness.

It took me a while to stop declining when people asked me if I’d like to do something. I couldn’t let myself be distracted from her care. And very few people were let in. And I feel I should work my way through a list of loved ones and friends and say sorry. Sorry I didn’t let you in. I couldn’t let you in. And if you read this, please know that I am sorry.

It took me a while to move the leftover tubes, syringes, PH strips, saline solution, and catheters from the house to the garage, it took me a while to give Mark the okay to take it from the garage to the tip (hospitals won’t let you return it – such a waste). And even then I would panic and think, what if she needs all of that again?

When the community team came to take her machines away, I closed the door on them, smiling goodbye, and then I burst into tears. With relief. But also a small bit of fear that my safety blankets had gone.

Now she just needed us.

And it was something that I wanted for so long. But it took me a long time to accept that I was enough now. I didn’t need to be anything but good at cuddles. Or making her smile. Or loving her. That was all she wanted from me.

I said to Mark last night that part of me would like to go back. To relive those early weeks and months with hindsight, or foresight, or both, I don’t know. Just to live them and enjoy them and not be frightened of them. I remember flicking through my phone as Daisy slept on my chest in NICU. It was always so warm in there so I had to keep my mind busy or I would fall asleep. I used to see other little babies at home in their mother’s arms. Or families out being families. And I would force myself to like those photographs or updates. Or comment when I could. Because I did not want to be bitter about what had happened. And while I wanted to trade places with my friends, for the moments they were having, I didn’t because I could not have loved my baby daughter more.

We aren’t free of everything just yet. Daisy isn’t gaining masses of weight, but then she isn’t losing either, so I am trying to stay positive about that. I haven’t really spoken about it, because I am sometimes worried that I come across as a misery guts who always has problems. Like The Boy Who Cried Wolf. Or just The Mama Who Cried, in general. She eats plenty. And I know she uses a lot more energy managing her cleft and coordinating her breathing, and she likes to roll around now too. So I’m hoping my quiet confidence will be enough to get us through that. The thing is, I understand that the worst outcome would be that she has to have high calorie milk. But my more frightened irrational side worries that these made-up evil doctors in my head will come at us with a feeding tube. Like a nightmare. They are my bogeymen. And yet they don’t actually exist.

She has surgery in February 2017. I don’t know when exactly yet. When I think of it I get a slow prickle of fear. I know she will be okay. But part of me just doesn’t want to go back to Manchester. It’s a great hospital, of that I am sure, but we had a bad experience and we know we were caught in a particularly awkward, almost political situation regarding the course of action for Daisy. And I don’t want to see those familiar corridors ever again in all honesty. I really don’t.

We’ve also been warned that Daisy may have to have an airway put back in overnight for surgery, just because of swelling. And it’s fine. It is normal. It’s okay. But for us it will feel like ten steps backwards, because just seeing her face covered with Duoderm and a tube obscuring the baby girl I know – it will be very difficult to see without getting flashbacks I think. But to know for sure, we’ll have to wait until it all happens.

I do sometimes struggle with guilt, even today. I went through this as a parent with Mark by my side. And my parents understood what we were going through too. But the guilt? Well, I am going through that on my own. I can’t share it. Offload it. Blame someone else. And it’s hard because I am sat here and I know I am okay, and I know my daughter is too. And will continue to be. But when I think back to the first five months of her life, I know that we all went through that because of who I am. My genetics conquered our lives and one day, my little girl will be a woman and may want a child of her own. And I am going to have to sit her down and tell her, it will be okay, but you need to know what might happen. And I feel like I will have to say sorry again. This time to her face when she is old enough to understand.

I think I just need to accept that I haven’t done anything wrong. I didn’t do anything bad. I didn’t make a mistake. I simply was born this way and I wanted to have children more than anything in the world. I don’t think I understood the extent of what was going to happen. It was hard to be me now, and look back on a history I don’t remember, and be worried for the future. I just had faith. And my faith may have wavered, but we have come out of the other side and the phrase: “The days are long, but the years are short” could not be more apt.

But what now? Well, now we just enjoy that period of quiet. We do have a hospital appointment on Wednesday – a paediatric check-up to see how Daisy is doing – but other than that, it should be a quiet  Christmas for us. Which is all we could want for at this time of year.

Just to enjoy our daughter. Our son. To put this magical and challenging year in that box of memories. The year that tested us. The year that pushed us to the limits. But the year that our beautiful daughter was born. And the year that we became a family of four.

It is going to be okay.


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  • Reply
    22nd November 2016 at 1:40 pm

    This has really touched me. I don't have any experience with babies that need extra care when they are born, and I can only imagine how brave and strong you and your family must have been throughout.

    The picture of your gorgeous little girl makes my heart melt! She is so sweet.

  • Reply
    22nd November 2016 at 4:46 pm

    Oh goodness she's beautiful.

  • Reply
    23rd November 2016 at 11:06 pm

    I love that photo. You can see what a happy content baby she is..and that's because of you Charlotte. This past year sounds just so overwhelming I can barely imagine going through it and you've shown great strength to share it as you've gone. You are a strong little family unit and will get through anything life throws at you and your kids are going to be so so proud of their mumma x

  • Reply
    Janelle Weigum
    1st December 2016 at 7:07 am

    My name is Janelle and I have been reading your article in regards to your daughter daisy.
    My friend found your article and sent it to me as a means of support as your article has basically mirrored the last 10 months of my life. It was my son not daughter and he was our fourth child and they considered it a random occurrence but every thing else about your article was like I was reading a book that I had wrote myself.
    My son is set for surgery on December the 8 th which is next week and I'd be a liar if I said I wasn't afraid …… but I'm also excited to have this chapter in our life complete. ThNkyou for your well written article it is reassuring to know that we are not alone In this experience. Good luck and God bless your family and your precious beautiful little girl.

  • Reply
    kathryn Louise
    5th December 2016 at 2:17 pm

    [email protected]

  • Reply
    18th May 2017 at 2:51 am

    I must say it was hard to find your site in search results.
    You write interesting posts but you should rank your page higher in search
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  • Reply
    26th January 2019 at 11:41 pm

    My DD was born 16 years ago with a cleft palate. I had never heard of it prior to her birth. Information was so limited at that time. Thank you for taking the time to write for new parents of cleft babies. Till this day, I still get times when I still feel guilty but I know that it was nothing I did or could have done to prevent it. .

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