World Prematurity Day 2016, featuring The Smallest Things

Today, on World Prematurity Day, I can’t help but think about the weeks in which Eva, Megan and Harry spent in NICU at birth, about the worry, the frustration, and the desperate sadness at leaving the hospital with empty arms, having left in much the same way years earlier. For us, seeing our babies wired up in an incubator, scary looking masks covering their faces, the bleep of machines, the feeding tubes, and a feeling of complete and utter helplessness, that was scary enough. But for others, with babies born far more prematurely, with far greater complications than mine, I can’t even begin to imagine how they get through those weeks, and months, when their babies lie fighting for their lives in an incubator.

This weekend I was up against the amazing Catriona from The Smallest Things, in the MumsNet “Best Campaigner” category. And when she scooped the prize I applauded every bit as loudly as the rest, not one jot of disappointment for my own defeat, because in all honesty, I would have voted for her too. She tirelessly campaigns to raise awareness, help other parents, and change the world, one step at a time.

So I was very grateful when she agreed to share her story with me today, to remind others that for many parents whose babies are lucky enough to make it home from neonatal, it really is only the beginning.

Today, 17 November, is World Prematurity Day. A day to celebrate, remember and raise awareness of the 15 million babies born too soon each worldwide.  

For me, World Prematurity Day is an opportunity to raise awareness and increase the understanding of a journey that does not end when you bring your baby home from neonatal intensive care.

My first son, Samuel, was born at 30 weeks with little warning. It was just your usual Friday morning, I was getting ready for work and looking forward to the weekend – and then it happened – my waters broke. Just hours later I had given birth to a baby boy. I had become a mother and yet my baby had been taken away to intensive care, housed inside an incubator where a life support machine mechanically filled his tiny lungs. I had become a mother, but as I left hospital empty armed I felt numb, empty and lost.

first-hold-day-6

The uncertain and stressful nature of neonatal intensive care is not something I would wish upon anyone and people ask me how I managed it. The truth is when your life is suddenly turned upside down by the premature arrival of a tiny baby you have to be strong. There isn’t really any other option. And for the days when you’re not feeling strong, when you’re not sure you can carry on, the neonatal community picks you up, lets you know you are not alone and helps you through the most difficult of times.

It is this support that can disappear though when you leave NICU – “Even our closest friends don’t really know what we’ve been through” I remember saying. You see, friends and family will often think that everything is okay once you leave the unit and the difficulties of NICU are behind you. “Thank goodness that is all over” was a comment I struggled with. When you meet your health visitor they don’t seem interested that your baby was born early or say how happy you must be that your baby is finally home with you.

You missed out on the antenatal classes, missed out on finding a circle of ‘mum friends’. And when you do venture out to mum and baby groups your experience is so very different from anyone else’s that the feelings of grief, loss, anger and jealously begin to surface again.

We know that 40% of mothers develop post-natal depression following neonatal intensive care, (compared to 5-10% of mothers delivering without complication at full-term) and that more than half experience anxiety and symptoms of Post-Traumatic Stress Disorder – and yet the world of neonatal intensive care remains hidden and the isolation and mental health difficulties faced by mothers following premature birth are seldom spoken about.

Today is World Prematurity Day and I will speak about my experiences to raise awareness; but just as the neonatal journey does not end at the NICU door, the importance of raising awareness should not end with World Prematurity Day. That is why I began The Smallest Things campaign in 2014, raising awareness of premature birth and life beyond NICU, making sure that others could find the support they need 12 months a year.  

You can read more about Catriona’s Smallest Things Campaign and her incredible journey here.

What is it like having a premature baby? | It is hard to imagine what it would be like to have your baby taken to NICU as they were born too early. Moms and dads across the world have to go home without a a baby as they were born too early and aren't strong enough to go home. In this post a mum talks about her baby being born at 30 weeks pregnant and what that meant for her www.fivelittledoves.com

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79 Comments

  1. November 17, 2016 / 9:23 am

    Thank you for sharing. This is definitely something we need to raise awareness of, throughout my pregnancy I was petrified the baby would come early, regular braxton hicks and hospital visits from 26 weeks. Luckily my babies were all born at term. We need to give mums far more support when they come home, it is scary having a baby looked after in the NICU for so long and then you’re on your own. Local support groups would help x

    • Laura Dove
      Author
      November 17, 2016 / 10:31 am

      That’s exactly it, most people assume you bring the baby home and everything is back to normal, but it’s impossible to go through that rollercoaster of emotions in NICU and just carry on like it never happened. I was hugely paranoid about my babies getting sick when we brought them home, very protective and anxious and its not wonder that such a high percentage of NICU mums end up with PND. Thank you for reading. xx

  2. November 17, 2016 / 10:58 am

    I cannot begin to understand how stressful this can be. My daughter was born 1 month early and weighed 4lb 13 and we were discharged the next day. I was absolutely terrified x

    • Laura Dove
      Author
      November 17, 2016 / 4:35 pm

      Wow really!! That’s amazing! Megan and Harry were both very poorly with infections after birth so regardless of had they been full term, we would have been in NICU anyway. It’s such a worry and yet it’s also reassuring to have such trust in the NICU doctors and nurses, I couldn’t fault any of them! xx

  3. Jackie
    November 17, 2016 / 11:49 am

    This has always been a big fear of mine as I’m just not sure how anyone copes with such a traumatic experience. Sending lots of love and hugs to all mamas and papas of babies who arrive early and wishing you lots of happiness and strength xxx #brilliantblogposts

    • Laura Dove
      Author
      November 17, 2016 / 4:31 pm

      It’s a huge worry in pregnancy isn’t it? I was so focused on not losing the baby that I never really thought about it with Eva but after a huge bleed she was delivered at 34 weeks and I really wasn’t at all prepared! I worried so much about it with my youngest two, I had contractions with Harry from 13 weeks and was certain I wouldn’t make it anywhere near full term! xx

  4. November 17, 2016 / 1:41 pm

    Such an important post on such an important issue. I can’t imagine how challenging it must be to have a premature birth and baby. x

    • Laura Dove
      Author
      November 17, 2016 / 4:19 pm

      It’s a huge challenge for any family to get through, not just the parents but any siblings too. My eldest was 9 and 10 when we had Megan and Harry and he would be in tears every night wondering when his siblings would come home. I had really underestimated how it would affect him, and all of us. Thank god there are people who campaign tirelessly to raise awareness! xx

  5. Jayne @ Sticky Mud and Belly Laughs
    November 17, 2016 / 5:10 pm

    It must be such a rollercoaster of emotions to have to go through something as traumatising as this.
    So nice to see so much awareness being raised for such an important cause, support means a lot at times like these xx

    • Laura Dove
      Author
      November 17, 2016 / 5:31 pm

      Doesn’t it? And this is the lady who won the Best Campaigner on Saturday Jayne, she is amazing and it was completely deserved. xx

  6. November 17, 2016 / 7:30 pm

    Thank goodness there are people who campaign so hard to raise awareness so that others can get the support that they need. Beautifully written post on such a vital topic.

    • Laura Dove
      Author
      November 17, 2016 / 8:12 pm

      The Smallest Things is a amazing campaigner, thank god for people like her indeed. xx

  7. Karen
    November 17, 2016 / 9:07 pm

    I can’t possibly imagine the pain leaving the hospital empty handed. I know my son was so sick when he was born but I was one of the lucky ones. I.C.U was amazing and took a photo of him in case as I was too sick to go up to see him myself. The fear that might be my only thing I might of taken home will haunt me.

    • Laura Dove
      Author
      November 18, 2016 / 9:51 am

      That must have been awful. It never leaves you does it? xx

  8. November 17, 2016 / 11:46 pm

    Amazing post! I may have cried just a little. #momsterslink

    • Laura Dove
      Author
      November 18, 2016 / 9:48 am

      Ahh bless you. xx

  9. November 18, 2016 / 8:32 am

    Lovely post, really well written. I know for us that we may have been discharged from neonatal after 8 days, but my Piglet was still not well and we ended up being readmitted a week later because he just couldn’t cope. Its isolating and no one fully understands what you’re going through. #picknmix

    • Laura Dove
      Author
      November 18, 2016 / 9:44 am

      Oh gosh that must have been awful to have to go back. It really is an isolating experience, I remember feeling as though we would never get to bring them home! xx

  10. Natalia Molinero
    November 18, 2016 / 8:36 am

    This is a great campaign. My bf’s nephew was premature and he told me how horrible were the first weeks, too much suffering. It’s nice to know the support and awareness are rising x

    • Laura Dove
      Author
      November 18, 2016 / 9:43 am

      It really is such an important campaign, so many parents are left to deal with life after NICU with no support! xx

  11. clairejustine
    November 18, 2016 / 9:27 am

    Great campaign to raise awareness off. It is such a big worry in pregnancy isn’t it.

    • Laura Dove
      Author
      November 18, 2016 / 9:41 am

      Thank you for reading, very important subject indeed! xx

  12. Kellie - Hooray for Moms
    November 18, 2016 / 2:14 pm

    Thank you for sharing this. It’s such an important campaign and raising awareness is key.
    #FabFridayPost

    • Laura Dove
      Author
      November 18, 2016 / 4:42 pm

      Thank you so much for reading! xxx

  13. Katy - Hot Pink Wellingtons
    November 18, 2016 / 5:13 pm

    Thanks for sharing this Laura. After my 20 week scan I had the fear of god put into me by the consultant who told me that I was at a major risk of premature labour, and all her talk was just about getting to 25 weeks where the baby would be ‘viable’ (horrible term). Then once I’d got to 25 the aim was to get to 30. And then every day past 30 was a step closer. In the end Max arrived at 39 weeks. But I researched other people’s stories and worried and worried, and can only imagine how difficult it is for those parents and babies who do arrive prematurely. But I definitely found it inspiring to read about other people’s journeys, no matter how difficult they are – it’s incredible what modern medicine can do these days and I’m in awe of the doctors and nurses who do such a great job in looking after these little ones.

    • Laura Dove
      Author
      November 20, 2016 / 4:06 pm

      Wow that must have been so scary Katy, what a huge stress throughout your pregnancy!! I think reading other peoples stories is always inspiring, even the ones that don’t end well, because the fact that they survived it is reassuring in itself, however heartbreaking. Modern medicine really is amazing, I remember sat there thinking these machines are literally keeping these babies alive and I realised just how lucky we are to have that available to us, other countries sadly don’t. xxx

  14. November 18, 2016 / 9:14 pm

    Thank you so much for raising awareness about this important issue. My niece was born at 27 weeks and, even from a distance, those months of waiting and hoping and fearing and praying were awful. I can’t imagine how difficult it must be to be there yourself. #PoCoLo

    • Laura Dove
      Author
      November 20, 2016 / 3:59 pm

      Oh wow that’s so early isn’t it? It must have been so difficult for all of you. I hope that she is fit and well now? xx

  15. November 18, 2016 / 9:26 pm

    This sounds just like my SIL. My niece was born at 31 weeks and was in hospital for 2 months. She missed out on antenatal classes and spent the first two months are maternity leave in a hospital. It was tough and life was definitely very different for her as a new mum. My niece is now 6 years old and you would never know her journey into the world. Its so important that we raise awareness x

    • Laura Dove
      Author
      November 20, 2016 / 3:58 pm

      Gosh that must have been such a difficult time for them, I think any mum with a baby in NICU feels cheated somewhat, I know I did. I felt we missed out on those first few weeks of bonding as a family and I literally wanted to tear myself in two to be at home with my children and at the hospital with another. I’m glad that your niece is now fit and well, that’s lovely to hear. xxx

  16. Renna
    November 19, 2016 / 10:11 am

    Thanks for sharing this post. My boy was only 10 days early but we stayed in hospital for over a week afterwards as he was unwell . Having a baby is scary enough but when there’s complications it’s even scarier. My hospital in Watford were amazing.

    • Laura Dove
      Author
      November 20, 2016 / 3:56 pm

      Definitely, I don’t think any of us prepare for complications, nor can we even really prepare ourselves! xx

  17. November 19, 2016 / 1:10 pm

    I can only imagine the worry and fear, until you bring baby home. Hugs Laura! When I had my son, it was supposed to be a normal delivery but after more than eighteen hours of labor, both of us went into trauma and I had to rushed to an emergency cesarean. I admire you for your strength! #FabFridayPost

    • Laura Dove
      Author
      November 20, 2016 / 3:53 pm

      Oh gosh that must have been terrifying for you! I think we all have expectations of what it will be like to give birth, to hold that baby and in a very short time, take them home forever. I struggled massively with leaving hospital without my baby, for me it brought back memories of leaving years earlier without Joseph, and I can’t even tell you how that broke my heart. Thank you for being so supportive of my blog, it is always appreciated. xxx

  18. Brandi with Big Fit Fam
    November 19, 2016 / 3:48 pm

    I can’t imagine not being able to take my baby home, it is terrifying for me and i have never had to do it. You are a strong woman! I love that shared this story, we could all be a little more aware of the struggle going on for mama’s who can’t take their babies home with them. I wrote a piece on NICU care packages that I would love you see, I will email you the link! #momsterlink

    • Laura Dove
      Author
      November 20, 2016 / 3:51 pm

      Oh I will take a look now, thank you so much! xx

  19. Anosa
    November 19, 2016 / 7:53 pm

    You know seeing it happen to someone else or watching it on TV is totally different to what people actually go through, I cant even imagine what it’s like to be a parent but not go home with your baby.
    Thanks for sharing her story.

    • Laura Dove
      Author
      November 20, 2016 / 3:48 pm

      That’s so true. Leaving the hospital without your baby is without a doubt one of the hardest things I have ever had to do. xx

  20. November 19, 2016 / 9:28 pm

    Thanks for sharing Catriona’s post on your blog. I saw her the other day on the news campaigning for extra maternity leave for mother’s of premature babies, and I was captivated by her story. I never really thought that having a premature baby meant that you might miss out on baby groups, it also means that when you do return to work having had a year off your child might only be 9/10 months old. I hope that your post helps to raise awareness, and Catriona’s story too. Thanks for linking up at #fortheloveofBLOG this week. Claire x

    • Laura Dove
      Author
      November 20, 2016 / 3:47 pm

      She is amazing, it really does affect you in so many ways. My husband had used up all of his paternity leave before our children had even come home from NICU, so he too missed out on so much of that initial bonding, as did our families and children as they weren’t able to visit with them being in intensive care. I really regret that we missed out on that time. xx

  21. November 20, 2016 / 2:32 am

    Wow Great post, and yes people need to be made more aware of this need. Thanks for sharing! #kcacols

    • Laura Dove
      Author
      November 20, 2016 / 3:43 pm

      Thank you for reading! xx

  22. Nige
    November 20, 2016 / 9:10 am

    The girls spent 6 weeks in special care it’s a massive rollercoaster of emotion not fully appreciated unless you have been there great post as usual Laura it brought a tear to my eye thinking of girls there Thanks for linking to the #THAT FRIDAY LINKY come back next week please

    • Laura Dove
      Author
      November 20, 2016 / 3:43 pm

      Aww Nige, that must have been such a worry for you all, it’s amazing the work they do in there to keep our babies safe. I’m so glad that your girls grew healthy and well, we are very lucky aren’t we? xx

  23. November 20, 2016 / 9:30 am

    I have had two prem babies and it’s such a scary time and there needs to be more awareness as so many people think “its just a small baby” when there’s so much more to it than that. Thanks for sharing this to help raise understanding #kcacols

    • Laura Dove
      Author
      November 20, 2016 / 3:42 pm

      Absolutely, and people think once they come home that’s the end of it. It affects you long term, even when you don’t realise it! xx

  24. November 20, 2016 / 11:19 am

    Oh wow, I hadn’t heard the figures for post natal depression before, that’s really shocking! There should be support groups in place to help parents of NICU babies. I can only imagine the stress! Our oldest was in special care for four days but it wasn’t serious – but it was enough to make me an emotional wreck for weeks after. Visiting from #KCACOLS xx

    • Laura Dove
      Author
      November 20, 2016 / 3:40 pm

      It does affect you afterwards doesn’t it? We were on edge for months after seeing so many poorly babies in NICU, even when our babies were thriving. It’s a shocking statistic, it was only after my PND returned that I found out just how much a baby in NICU increases your risk. xx

  25. November 20, 2016 / 3:01 pm

    Our twins were born prematurely. R was born first weighing 4lb3, followed by M, 2 minutes later weighing 2lb11. They were tiny. They spend 27 days in NICU. It was such an emotional time. Such a mixture of emotions. They’re soon going to be 5 years old! Thanks for linking up to That Friday Linky

    • Laura Dove
      Author
      November 20, 2016 / 3:37 pm

      Oh gosh that must have been such a rollercoaster of emotions, it was always a real worry of mine and I guess with twins even more so. They are gorgeous girls, thank you for hosting. xx

  26. November 20, 2016 / 5:22 pm

    A beautifully written post, thanks so much for sharing. I feel so lucky to have two girls born at full term and with no health problems. I can’t imagine what it must be like to have such a tiny baby and not be able to cuddle them properly, or feed them, or take them home with you. Thank you for highlighting this #dreamandsparkle x

    • Laura Dove
      Author
      November 20, 2016 / 9:18 pm

      My eldest was full term and home within a few hours. It came as a huge surprise to us that our three youngest would need to have extended stays in NICU, more so with our fifth baby when there were three very young children at home who also needed their Mummy. It’s very difficult when you can’t by in two places at once! Thank you for reading. xx

  27. November 20, 2016 / 5:50 pm

    Such a great thing to do and ask her to write on your blog! I shared some posts about that special day. Such an experience to go through that! #DreamandSparkle

    • Laura Dove
      Author
      November 20, 2016 / 9:17 pm

      Thank you, it was a real honour to feature her on the blog. xx

  28. Laura Delaney
    November 20, 2016 / 5:58 pm

    A very inspiring and emotional post. My sister was born at 30 weeks and without the staff which did their upmost to keep her alive at that time, I wouldn’t have her with me today! 15 million babies seems surreal! Well done for raising awareness xxx #KCACOLS

    • Laura Dove
      Author
      November 20, 2016 / 9:17 pm

      Wow I’m so glad that your sister was able to survive due to the amazing work of staff in NICU. It’s an astonishing number of babies isn’t it, thank you for reading. xx

  29. November 20, 2016 / 6:09 pm

    You’ve written a wonderfully insightful post, helping to raise awareness for the mothers and fathers of premature babies. Support of all sorts, emotional, physical and practical, is really important for all families following childbirth but especially critical in cases of premature delivery and/or complicated deliveries at term, too. With our first child, my wife had an emergency c-section after 33 hours of labor and was left with an infection that lasted 6 weeks. It was the kindness and help of our community that got us through with lifts to the hospital, warm meals every night, help babysitting so my wife could rest while I worked. My wife and I admire your strength and courage and hope families, friends and neighbours can learn from posts such as yours and reach out to support new parents.

    • Laura Dove
      Author
      November 20, 2016 / 9:16 pm

      Thank you so much. I’m so sorry to hear what you went through with your first child, that must have been very difficult but what an amazing community you have to offer you so much support and kindness. Those little acts of kindness go a long way when you’re dealing with something so difficult. I hope that your eldest is fit and well now. xx

  30. November 20, 2016 / 6:27 pm

    Oh wow what a story! I think posts like these can help so many, those that are going through it and those that have no idea what to expect from a Neonatal journey. Thank you so much for sharing this at #DreamandSparkle

    • Laura Dove
      Author
      November 20, 2016 / 9:14 pm

      Thanks Kat, it’s so important that people are aware what so many parents have to go through. xx

  31. November 20, 2016 / 7:08 pm

    Catriona sounds an amazing lady and a worthy winner, although I think all of the finalists were all winners and was so glad I didn’t need to be the one choosing. I’ve no experience of babies or preemie babies and hadn’t considered any of the things raised in this post. Sounds like lots more people need to realign their thinking. Thanks for sharing with #PoCoLo xx

    • Laura Dove
      Author
      November 20, 2016 / 9:13 pm

      Absolutely Steph, she’s an amazing lady! xx

  32. Kerry Norris
    November 20, 2016 / 9:16 pm

    Amazing post. Beautifully written. I cried a little reading it. My cousin gave birth at 24 weeks last year. It was a long ordeal for both of them but her daughter hope is alive and that’s the main thing xx

  33. November 20, 2016 / 11:17 pm

    Well done for sharing. It’s so important to spread awareness #dreamandsparkle

    • Laura Dove
      Author
      November 21, 2016 / 9:26 am

      Thank you so much for reading! xx

  34. November 21, 2016 / 12:04 pm

    What a great campaign! Thank you for sharing, I can only imagine the fear and stress of having a premature baby. It’s unbelievable how tiny they can be.

    • Laura Dove
      Author
      November 21, 2016 / 2:38 pm

      Isn’t it!! Makes you realise how lucky you are. xx

  35. November 21, 2016 / 8:51 pm

    Thanks for raising awareness about such an important issue. #fortheloveofblog

    • Laura Dove
      Author
      November 21, 2016 / 9:25 pm

      Thank you for reading! xx

  36. November 22, 2016 / 10:56 am

    Popping back for #KCACOLS. It’s so good to see this post getting the recognition it deserves. Thanks so much for linking up at #KCACOLS. Hope you come back again next Sunday

    • Laura Dove
      Author
      November 22, 2016 / 12:29 pm

      Thanks lovely. xxx

  37. November 22, 2016 / 11:27 am

    Laura, thank you so much for featuring The Smallest Thing and your own experiences in helping raising the awareness. It is such a very hard topic to talk about, but it is an important one. Well done for liaising with The Smallest Thing. Together – you are a force to be reckon with. Lots of love, Xxx

    Thank you so much for linking with us on #FabFridayPost

    • Laura Dove
      Author
      November 22, 2016 / 12:26 pm

      Thanks Su, glad to have been able to contribute to the awareness day. xxx

  38. November 23, 2016 / 6:56 am

    My best friend had her first daughter at 29 weeks and I remember just how tiny and helpless Bethany was. They went through an awful ordeal but thankfully Betty is a happy healthy 13 year old now 🙂

    • Laura Dove
      Author
      November 23, 2016 / 2:54 pm

      Oh gosh, I bet!! That’s lovely to hear, the NICU doctors are amazing! xx

  39. November 24, 2016 / 10:15 pm

    I love how gracious you are here lovely, though I would expect no less. A brilliant post and an important one.

    Thanks for linking up to #PicknMix

    Stevie x

    • Laura Dove
      Author
      November 25, 2016 / 12:35 pm

      Ahh thanks Stevie, there’s nothing gracious about it really, she was the worthy winner and it’s a real honour to share her story. Thanks for hosting. xxx

  40. Nikki
    November 26, 2016 / 6:39 pm

    As a nurse I have had the pleasure of looking after some very premature babies and it has been a pleasure. It is so nice to see them grow and then go home. Thank for for sharing your post at #DreamandSparkle this week xx

    • Laura Dove
      Author
      November 28, 2016 / 11:05 am

      Ahh and thank you for all of the work you do! xx

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