Welcome

xcsNothing can quite prepare you for parenthood, but for parents of premature babies the planning and expectation of a new arrival is dramatically interrupted.

When my first son was born 10 weeks early we were thrown into a world of micro-nappies, beeping machines, breathing tubes, feeding tubes, expressing pumps, portholes, picc lines and rigorous hand washing.

As an occupational therapist in the NHS I had worked in a large neonatal intensive care unit; I was used to handling tiny babies, their tubes, lines and machines, but as a parent I was lost in a bizarre medical world where we would wait day after day to hold our baby.

Whether you are a parent, healthcare professional or know someone with a premature baby, I hope you find this site useful and I invite you to support us to;

  • Raise awareness and understanding around premature birth
  • Campaign for better follow-up care and more support for parents following their NICU stay
  • Campaign to extend maternity leave and statuary maternity pay for parents of premature babies

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28 thoughts on “Welcome

    1. Jo-Anne Taylor

      My son Lucas was born at 26 weeks weighing only 14oz (400grams). He was so poorly he had NEC, MRSA, Candida, kidney failure, about 20 blood transfusions and at 4 months had to be resuscitated (spelt wrong?). He is the smallest boy to survive in the UK. He was in hospital for almost 5 months before he came home on oxygen. He was only home a couple of weeks when my maternity leave finished in my job I had for 13 years.
      I agree maternity leave should start from the day these babies come home, then holidays should be allowed to be taken after that. Then and only then should we even think about going back to work. I wish this had been bought in years ago.
      Lucas is 14 now he has problems but we’re lucky to have him. Xx

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  1. Belinda Shorney

    hi this site is great – our little chap was born not prem but poorly and reading this resonates with me much – the bleeping and tubes and not holding him – just aching to take him in our arms . Hardest 2 weeks of my life . Thanks to Derby NICU and the amazing staff he is now a beautiful 18 month old toddler . We owe Derby hospital everything – Oli is just a miracle . Your site helped me to understand what we had been through and share it as unless you have lived it – no one truly understands x

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  2. Claire Welsh

    Just been reading your blog & it’s so reassuring to know that a lot of the thoughts & feelings I had whilst baby was in special are common amoungst prem baby mums! Hated my thought train at times but now know it’s not just me!

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  3. Bernadette Armstrong

    My twins were born at 26 weeks, one at 730 grams and the other 550 grams, sadly the small one fell asleep with the angels, the other one is now 15 and ft5 4′, and wonderful.

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  4. ijemack77

    Ah. Our baby girl was born at 27 weeks in January. 9 weeks in hospital with a lot of worry and uncertainty. She came home on oxygen and is still on oxygen now .
    It’s a world we never contemplated. A situation that never crossed our minds. I’m still reeling from the shock. My husband was on a zero hour contract so could not stop working because we needed his wage. I’m shocked that my friend who had a prem baby nearly 30 years ago went through the same situation we are facing with regard to work. The law needs to accommodate parents with premature babies.

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  5. Mairead

    I has two girls born at 26 weeks. My first daughter passed away at 11 days old. My second daughter spent 16 weeks in Nicu. We she came home we had lots of medical appointments medication etc. My daughter developed a condition due to misdiagnosed heart condition. The pda was not closed and she develops pulmonary hypertension. My daughter passed away at 23 months old. This time was precious.

    I lost my job during this time. It was impossible to return.

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    1. Joanna

      I’m really sorry to hear this, your post really hit a nerve as my twins were born at 26 weeks and my son had his heart valve close at 10 days old when he weighed just 2lb. My twins were monitored very closely and heart scans were routine. My heartfelt condolences to you x

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  6. Liz

    Thanks for your site. It helps me understand more about what my parents went through whilst I fought against the odds. I came into this world at 28 weeks weighing 910 grams. Minutes old I was whisked into a waiting ambulance & christened whilst being police escorted across Liverpool.

    For my 18th Birthday, I was lucky enough to visit the NICU where I’d spent my first 6 months and meet/thank some of the remaining staff who’d fought tooth and nail for me.

    I’ll be 40 next year … Not telling you how much I weigh now, but it’s significantly more!

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  7. Z McKenzie

    I came across this site because I was looking to fight regarding maternity leave for parents of pre term babies. I had out son 10 weeks early with no warning and he was in ICU for 6 weeks. Thankfully he is a healthy 20 month old bouncy boy now.

    My maternity leave just came and went, when we got our son home he was having to be fed every 3 hours then to 4 hours. Meaning I got little or no sleep ( I didn’t expect my husband to get up with him when he worked 11 hours a day). By the time I returned back to work which was part time I was totally exhausted and hadn’t had a very pleasurable time to bond with our son.

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    1. Catriona Ogilvy Post author

      Have you signed our petition to extend leave for parents of babies born too soon? We have over 13,000 signatures now!
      Please do sign and share it and help us to make this important change x
      https://www.change.org/p/the-rt-hon-sajid-javid-mp-secretary-of-state-for-business-innovation-and-skills-extend-maternity-leave-for-mothers-of-premature-babies?recruiter=332532147&utm_source=share_petition&utm_medium=email&utm_campaign=share_email_responsive

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  8. Angie

    From one preemie mommy to another, I extend my love to you all!
    We lost our first born son back in March of 2009 due to what they suspect was IC (incompetent cervix). He was born at almost 22 weeks, lived a little over an hour then gained his angel wings. Hardest thing I’ve ever been thru in my life.
    Second son was born 2 months preemie at 31 weeks, 4 days in March of 2011. He weighed 4 lbs, 5 oz so he was a good weight for his age. He did amazingly well tho. Had a NICU stay of about 2 weeks total. And is now a very healthy, talkative 5 year old & you’d never know he was a preemie.
    Third son was actually full term! All the way to 40 weeks & had to be induced! Wasn’t an easy pregnancy tho. Cervix & placenta problems. Had to do 2 months of bedrest with him. He was born February 11 of this year weighing 6 lbs, 10.5 oz. I think I shocked a lot of ppl including myself with how far I had went in the pregnancy because of my history.
    I was shocked with my body but am thankful that I held up to make it to term!

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  9. Charlene

    Thank you for your article. My son was born at 33 weeks and was sent home at 35 weeks with no NICU follow up. He cried for the next 4 months and after a merry go round of visits to health professionals we never did get to the bottom of what was wrong with him- he just eventually stopped crying. He was diagnosed with failure to thrive and did not talk until 3. I had PND and even now 6 years down the track I panic when I hear a baby cry- I thought it might be PTSD but was unsure. Your article has helped me to know that I am not alone

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  10. sarah

    This is fantastic. As a mum of 2 micro preemies. A 25 weeker 500g and a 26 weeker 820g and a 35 weeker i think this is a great idea. I felt so lost when my babies were born. This helped me feel better and i know im not alone x

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  11. rubyaa

    Good Morning! I will be the mother of triplets , two girls and one boy , I’m 24 weeks , I need things for baby . if someone can help me ,donate something I will be very grateful! I m live in London , Plaistow . Thanks . Rubia

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  12. Leanne Haughton

    Lovely I love these stickers…. My baby boy was born at 29weeks and I feel some health care workers forget this xx what a brilliant idea xx

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  13. Marci

    My daughter was born at 23 weeks and 5 days. She weighed 500 grams and was 11 inches. She dropped to just over 12 ounces at her first surgery. She spent 5 1/2 months in the NICU and came with O2, feeding tube and every monitor one could think of.
    Today… She is 14, in the 8th grade, a little on the short side but proud of it! She has mild Cerebral Palsy and ADHD. I am so grateful for websites like this one. The support from other preemie families was the best support I could have ever had! It made the days tolerable and hopeful that my daughter would have another.

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  14. Malika Le Messurier

    I was born two months premature in December 1982 weighing 2lb 3Oz and had the bestest care possible even though it was in a small island hospital I am so happy that alot more premature babies are surviving thanks to the great treatment available these days. I feel mothers of premature babies should have longer maternity leave

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  15. Laura Gosman

    I myself was a premature baby, weighing the same as a bag of sugar when I was born. As a result of my condition I developed cerebral palsy and my twin sister died of lung problems. As you can imagine this was a very difficult time for my parents. I have just signed your petition and fully support your campaign.

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  16. Katy Goodson

    I have just listened to your interview on Radio 4 womans hour and I was hugely grateful for the information I heard. After 2 dear friends going through premature births this year, I was enlightened to hear about their reality of this time. You are quite right that it is not a widely known medical world for either pregnant parents or the rest of their support network like myself. Thank you so much for the tireless work you have put into raising awareness of the mental physical and financial strain that premature parents go through.
    Much Appreciated

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  17. kelly blacklock

    My daughter was born premature at 30+6 and I can fully agree with everything you have said hence why I have signed & shared this petition.
    Xxx

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  18. Alex

    What about fathers!? I had to go back to work leaving my daughter in NICU for 8 weeks. When it became apparent that she wasn’t going to make it we fought to get her home for a very precious 6 days before she died. I wish I could have been there with her more, and I wish I could have been there to support wife.
    We seem to have the assumption in society that fathers have no interest in their children and this is reflected in woeful paternity leave entitlement even with a healthy birth.

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    1. Catriona Ogilvy Post author

      Hi Alex,
      You’ll be pleased to hear we have been campaigning for dads too and have ensured that fathers will be included in the new bill being introduced to parliament on Wednesday – http://www.stevereedmp.co.uk/steve-introduces-proposal-to-extend-leave-for-parents-of-premature-babies/

      We are also always pleased to hear from fathers and have many blog posts about the needs of dads during neonatal care.

      Best wishes,
      Catriona

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      1. Alex

        I’ll apologise if I sounded angry. I’ve been sitting here crying as I type because thinking about it brings all the emotions back. Thanks for what you’re doing.

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  19. Claire Hall

    My 3 were all born early, extra maternity leave should absolutely be available. My son was very poorly till he was about 10 months old, so any extra leave would have been fantastic. My son ended up being in a school year above where he would have been had he been born on time. I feel very strongly that premature babies born in a different school year to their due date should be given the option of starting a year later

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  20. Marion Anne Sutton

    I had a premature baby 30 years ago and he was born 14 weeks early fortunately despite some long term health problems he leads a happy life but I can’t believe that parents are still facing the same maternity leave problem that I also faced all those years ago, it’s time for change and the sooner the better because the last thing parents of one of these special babies don’t need any additional worries

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