Time to Talk: PTSD the hidden cost of NICU

#TimetoTalk

I saw a post last year; it simply said “PTSD – The hidden cost of having a premature baby?”

Nothing can prepare you for parenthood, but you allow yourself to imagine the arrival of your baby; those first precious holds, taking them home to meet loved ones, the time together to grow and bond – and then suddenly everything you imagined is dramatically replaced with the alien and uncertain world of neonatal intensive care.

seeing our son for the first time

seeing our son for the first time

It is widely reported that parents who’ve spent time with their babies in neonatal care are a greater risk of developing anxiety or post traumatic stress disorder (PTSD). Some studies suggest that it affect as many as 70% mothers following NICU and given the nature of NICU this shouldn’t come as a surprise. Yet this is a topic that remains relatively unspoken about and more importantly there are limited, and in some areas no resources dedicated to it.

PTSD can have a significant to severe impact upon every day life; from re-experiencing or re-living events with often negative thoughts, by avoiding or becoming nub, to the feeling of being constantly on edge with anxiety and physical symptoms such as headaches, feeling nauseous or becoming light headed. I remember the first time I felt panicked and sick with PTSD, I was returning to the neonatal unit for the routine 4 week follow up review. Walking into the hospital I could hear and feel the sound of my heart pounding in my head; I could hear the beeps of machines and if I closed my eyes all I could see were wires. I felt sick to the bottom of my stomach and there was nothing I could do to stop it.

PSTD often presents itself after the acute phase of neonatal care; once you have left the claustrophobic confines of the unit and when the beeping of machines should be far behind you. The support network of the hospital can disappear over night and you are left to wonder how on earth you made it through. Family and friends may assume that the difficult times are behind you and accessing the usual mum and baby groups for support can be a struggle in itself. I’ve written before about answering the dreaded “how old is your baby” question . You try to explain prematurity, corrected ages and what being in NICU was like, but find you are greeted with perhaps good-willed, but often insensitive remarks such as “I could never have left my baby in the hospital” or “At least you didn’t have to go through proper labour”.

By the way, if you’d like to know what not to say to the mother of a premature baby, then check out our Top Ten here.

smallest thingsRather than being a supportive environment, mothers of premature babies can find the usual routes of seeking support closed to them. These exchanges can exacerbate negative feelings and bring back painful memories – I personally struggled to listen to others speaking about how they couldn’t put their new baby down, when all I would see was many tiny baby so far removed from me in his incubator. In addition many mums will not have the option to go out and seek help, finding themselves literally isolated during the winter months when their baby is still too fragile to be exposed to the cough and cold season.

The Smallest Thing campaign is seeking to raise awareness, not just within the general public, but also to the team of health visitors who will often make that first contact. Tommy’s have developed a brilliant Wellbeing Plan endorsed by NICE which helps women and health care professions to discuss mental health. With the knowledge that mothers have a significantly grater risk of developing mental health difficulties if they have had baby in neonatal intensive care we are calling on all health visitors to use the Wellbeing Plan or similar tools to discuss mental and emotional well being early on in the posy NICU journey.

Finally, mental health and the well being of others should be everyone’s business. NICU remains a mysterious and unknown place to those who have not lived it and for that reason perhaps it isn’t immediately obvious to see a link between time in NICU and PTSD. Raising awareness and speaking honestly about our experience and the true realities of neonatal care is therefore crucial:

Of the uncertainly and unknown. The panic that sets in when your baby is not in their incubator space when you arrive, have they been moved – is the news good of bad?

Of the physical pain at having to leave your new born everyday. The feelings of emptiness and loss.

Of the ups and downs; the lines, wires, monitors and alarms.

Of the hot, close, claustrophobic environment.

The security buzzers at the entrance and of the constant rigorous hand washing.

Feeling watched as you attend to the simplest of cares such as changing a nappy – of struggling with the simplest of cares such as changing a nappy!

And the feelings of guilt, jealousy, grief and loss that go hand-in-hand and in stark contrast to the feelings of joy, anticipation and hope.

I will always be a NICU mum; and PTSD will always be lurking around the corner.

51 thoughts on “Time to Talk: PTSD the hidden cost of NICU

  1. Leigh Kendall

    Reblogged this on Headspace Perspective and commented:
    As this post from The Smallest Things describes, NICU parents’ needs are often not met after their baby’s stay. Your baby constantly tipping between life and death, the constant emotional torture, beeps of the machines can all leave an enduring toll. The ‘usual’ postnatal systems and processes don’t meet these parents’ needs – and this needs to change.

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  2. Alana | Rockstar Preemies

    I actually found this article really hard to read, which is just a testament to how incredibly spot on it was. I think I am only starting to really realize how traumatic our NICU stay was with our 25 weeker twins, and it has been two years now. We’ve been so blessed to have a unexpectedly wonderful outcome, but even that weighs so heavy on my mind. I am so afraid of losing my children, even though they are now healthy and thriving. Flashbacks of NICU memories are crippling. To say that prematurity does not end at discharge is the biggest understatement I’ve ever heard! Thank you so much for writing this!

    Liked by 1 person

    Reply
    1. Claire

      Alana, I too found this hard to read, I have 2 NICU children (SCBU in the uk when mine were little) the oldest is 20 next week 32 weeks and 3lb 15oz, he spent 4 weeks in, the next almost 2 years later was 26 weeks 1lb 15oz and spent 10 weeks in.
      Im afraid the ‘could have beens’ and ‘should have beens’ have never gone away, I feel so cheated out of pregnancy and early baby life, even the childhood of the younger one as she spent so much of her early life at various hospital appointments, (up to 4 week on different days and a 50 mile round trip to hospital), also the choice to have more children.
      Luckily both are relatively healthy and lead a near ‘normal’ life despite the younger one having cerebral palsy.
      Last year we popped back to SCBU while in the hospital, it was the most traumatic thing I’ve done in a long time, not something I will repeat any time soon, the smell, the atmosphere and the noise, I ended up in tears and had to leave.
      I wish every single premie mum the very best and to have healthy children, Ive been there and vowed never ever to do it again!!

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  3. Grace Chiodo

    Wow! Thank you for the recognition! I’ve been home with my baby for only a few weeks. I am only know attemptimg to process the NICU experience. I am continuously asking myself “what just happened”? It has certainly been a rollercoaster of emotions and I am only know starting to grieve the experience. Like anything in life, it needs to be experienced to truly appreciate and understand what it means to have a premie baby. I often find myself sharing the experience to family & friends only to downplay what actually occured & what was felt when met with expressions of confusion and statements like ‘well he is home now”. I don’t blame anyone as I too may have expressed similar sentiments. Thankyou for acknowledging the stressors and anxiety associated with the unfamiliar world of NICU.

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  4. Nicole

    This was hard to read as well. I still worry about my boys and they are nearly 8. I have anxiety from nicu days. One of the hardest moments I had whilst in the nicu was realising that babies do die in the nicu. After 150 days in the nicu I was exposed to deaths, families saying their last goodbyes or empty cribs the next morning. It was hard to head home and sleep. I slept because of pure exhaustion. As soon as I woke, I would call the nicu not knowing if my boys were ok or still alive.

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  5. Laura

    Yes. So much yes. But I would expand it to include all NICU moms. My second son was full term, 8 lb 13 oz…and, according to the neonatologist who admitted him, ‘sicker than 99% of the babies than we ever see here.’ He was not expected to live, and was expected to be majorly brain-damaged if he did. He’s a perfectly normal, healthy 6 year old now. But I still have flashbacks from time to time.

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    1. Zoe Tighe

      Yes, yes, yes. The term babies are often the sickest and their parents undergo such difficulties as well – the expected healthy full term baby who is not healthy and often very near death. Thank you for acknowledging these parents.

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  6. Teresa Albrecht

    We left the hospital after 2 weeks of hell – two separate deliveries a week apart, a C-section without proper anesthetic, one of our twins sustaining a massive brain bleed. . when I went outside the hospital for the first time, everything was so so very intense, the outdoor colors and sounds were overwhelming – loud, brilliant, the smells intense. I described this phenomena to a psychologist once, and he said the only time he’s heard this same thing described was in a former prisoner of war. PTSD in neonatal parents is very real. Thank you for this article. Truly.

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    1. Teresa Albrecht

      And the other issue, not discussed in the article, but was alluded to in a fabulous article I read years back – preemie parents have a difficult time enjoying their infant/child, as they are always waiting for “the other shoe to drop”. .one of our twins came out of the NICU very severely disabled and medically fragile. Our other twin breezed through and came home with no monitor, no meds and a clean bill of health. We thought we were in the clear. We were not. At 3 she was dx with cerebral palsy, and at 16, with Aspergers and NLD. You just can never relax with a micro-preemie, even when things seem to be going well.

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  7. smilegrace

    Reblogged this on Smilegrace's Blog and commented:
    I think that this really highlights the mental cost of caring for a premature baby. I have only just had a second child and it is 8 years since our son was born prematurely. The PTSD I experienced was horrendous and the battle to recover is as great as the journey spent in NICU.

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  8. Stephanie Price

    Not to mention the guilt of leaving your older children at home while you try desperately to bond with a baby you cannot hold. If there was ever a time I wished I could split myself in two…

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  9. Chava Levin

    He’s 18-1/2 and I still wake up some mornings thinking I’ve just heard the nurse tell me that we had a much better night. Yeah, only six bradycardias and we only had to bag him once!

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  10. Taz's reality

    Prem birth is prem birth and i believe that our special care nursery stay of 3.5wks was enough of a mental challenge. The hardest parts i found (&still find) to respond to…..
    1.how did you leave your baby every day?
    2.Oh she was only 34wks, thats really not that prem.
    This article still resonates with me and i wonder if ptsd will rear its ugly head sometime in the future.

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  11. Taz's reality

    Prem birth is prem birth and i believe that our special care nursery stay of 3.5wks was enough of a mental challenge. The hardest parts i found (&still find) to respond to…..
    1.how did you leave your baby every day?
    2.Oh she was only 34wks, thats really not that prem.
    This article still resonates with me and i wonder if ptsd will rear its ugly head

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  12. Anonymous

    I find it disturbing that this article gives the assumption that a NICU Dad is irrelevant. I think they suffer just as much if not perhaps more so!

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    1. Catriona Ogilvy Post author

      Thank you for raising the NICU dad, just as important and often forgotten.
      What little reseach into the area of PTSD and anxiety following NICU does suggest a large number of dads are affected too.
      Much more awareness needed around the lasting affects of a NICU journey upon parents.

      We will be dedicating a week later this year to focus upon the needs of dads.

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  13. keepsmeoutofmischief

    After two separate stays in the NICU, two years apart, I realise what an effect it has had on me. On the one hand, it’s made me stronger. On the other, it’s made me incredibly jumpy around beeping machinery, ambulances and driving on the main road to the hospital. Health Visitors keep asking me if I’m ok (let’s tick boxes for PND) and I am. At the moment. I’m currently in the ‘we’ve just reached his due date’ haze, but I fear something will lurk in the background for a long time. I’ve been reading other posts on here and finding a great deal of support – wish I’d known about this when we were still in hospital.

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    1. Catriona Ogilvy Post author

      Thank you for your comments, and I am glad you are finding comfort in our posts.
      There is so much support out there in the wider NICU community and many find it a great relief to discover they are not alone with their feelings.
      x

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  14. Mrs PPP

    Reblogged this on Plots, Plans & Parenthood and commented:
    One in nine families in the UK will face spending time on a neonatal intensive care unit. NICU is not just ‘the place they keep tiny babies’ – it’s intensive care, a real medical crisis unit. The following is a wonderful and important piece about the reality facing one in nine families here in the UK.

    Miss PPP was rushed to NICU after birth, the transferred 86 miles away and placed in another NICU after emergency surgery.

    She left NICU after a week.
    Part of me never left.

    I was diagnosed with PTSD after my stroke. It took my counselor a week to figure out that the stroke was not the root cause of the PTSD…the time in NICU was. I was so busy ‘coping’ that I hadn’t ‘dealt’ with the emotional aftermath of our time in hospital (the first of many).

    More needs to be done to ensure parents are not handed their child and abandoned to ‘just get on with it’. There needs to be appropriate and relevant follow up to ensure that parents returning from NICU or PICU environments can emotionally and physically adjust to life ‘on the outside’.

    Please read, this could be happening to someone you love.

    Mrs PPP xxx

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  15. bridgeanneartandwriting

    That is so interesting. My experience was over 15 years ago with my premature twins. I have just finished writing a children’s book called ‘Dog Ears’ (due to be published in April) where the child narrator’s mum struggles with depression after coming home with a premature baby. It seems ridiculous, but I hadn’t joined the dots at all back to my own life, and I’m so glad, after reading this, that my story has that sub plot. Perhaps a child who reads it will remember when they are older, and recognise the symptoms in themselves or friends and family. So thank you. I would like to share a link to this blog post on my own blog. I realise that I had to write about that mum for my own sake too, and I send my love to all those newly experiencing it.

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  16. caroline hickman

    I am so glad I found this website. I started to feel I was going mad. I keep going over my time in NICU over and over again and have horrendous flashbacks. Everything that is written is so true and all the other parents experience’s mine have been so similar/almost identical. It is soooo reassuring to find this website.

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  22. JFT

    Thank you for your website. My son was born this year 8 weeks early at 2lb 6. He is still chilling out on the lowest centiles for his weight but generally doing well. I have many of the feelings you describe and feel I missed out on a relatively ‘normal’ pregnancy. I go to regular baby groups but can’t participate in any of the stories around birth/ late pregnancy as my experience separates me from everyone else. I wish it didn’t so I just keep quiet.

    Objectively I know I have been so lucky but everyone thinks once your home it’s over and it’s not. I still feel like crying when I think about special care, even though the staff were wonderful. I hope that there is more support for post SCBU parents in future.

    (I am an occupational therapist too and it has been eye opening to experience the NHS from the ‘other side’. They were fantastic)

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  25. Mara Smith

    My two daughters were both premature. I remember both times, there were incidents where I ran out of the NICU screaming and crying. The news from the doctors was not good and I just had to leave. My daughters are 30 and 36, those memories never go away. And no one talked about PSTD in those days, but I had it and it took years to get past it.

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  28. twintessential

    Your article has given me the courage to discuss how I really feel with my health visitor. My husband and I both have flashbacks about our time in the NICU. The doppler noise scares us. We can still ‘hear’ alarms in our heads. If we see a hospital monitor on a TV programme my husband knows what all the numbers mean. He can tell you all about oxygen requirements, heart rate, high flow etc.
    I am a critical care nurse and honestly don’t know if I can face going back to work in that environment. Right now, the thought terrifies me. I feel like I’ve ‘lost’ 3 months of enjoying my babies. However, each day I thank the NICU for saving their lives. My twins were born at 27 weeks.

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    1. caroline hickman

      I can really identify with the twin mum. I also work as a nurse and a year after Thomas came home I developed PTSD. I worked as a dialsis nurse and part of my job was to go to intensive care and dialyse patients. Since my experience in NICU I can’t face that environment anymore. Thomas spent 80 days in NICU. I said this to my manager and her response was ‘its part of the job’ She clearly hadn’t had any experience of PTSD. I handed my notice in and now work as an agency nurse, so can control where I go. Thomas is now almost 3 and I can’t still can’t even face the thought of going to ICU. I desperately want another baby but am terrified of another NICU experience.

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      1. twintessential

        Thank you for sharing that. It’s a real concern for me, however I’m trying not to let it get me down on what remains of my maternity leave. I will keep a check on how I’m feeling though. My miracle babies have taught me that life is far too precious to be wasted not being happy. I loved my job prior to this experience but if I have to change my career path then I will.
        I certainly can’t face another pregnancy knowing the same thing could happen again. It’s a very real fear. Having twins was a huge surprise and we are over the moon now to have two babies. However, I honestly don’t think I could enjoy or relax during another pregnancy having been through 12 weeks of NICU and SCBU.

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  29. Rita

    I am a NICU nurse, involved in holistic nursing and the healing arts. I think it is great that you address your PTSD, and you must keep that in mind for your ex preemies. They have had it too. I teach a workshop called Healing Touch for Babies, and have been involved with the Association of pressure and perinatal psychology and health. It is imperative that your little ones hear their story. Not from the aspect of being a victim, but more from a hero’s journey, and how proud you are of them for making it through difficult times. Time and again, this has been so empowering. I have seen little miracles happen.
    If you have any questions, or just want to read some articles on my website, plus interviews about babies, please do. I think it is a shame that we don’t embrace the emotional trauma that you experience. And for that I am sorry, so thus is my way of trying to bridge that gap. http://Www.healingtouchforbabies.com

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  30. Mari

    Thank you so much for this article. As a teacher of severely. Multiply impaired children, I am sure this stress has followed most of the parents I have worked with. Make sure you include fathers in your posts, or ask them to post, as they are the ones that are supposed to be the support and do not get it.

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