Tag Archives: preamture baby

No one told me, no one asked me, no one to support me

In hindsight, I should have known, but nothing prepared me for how my world would be tipped upside down after giving birth to my twins at 28 weeks in 2007 – still nothing has!

days before the unexpected premature birth

I wasn’t prepared for the abrupt end to my pregnancy and the finality of the birth. The following days were not how I had imagined they would be when I was a naïve, unsuspecting first-time mum, blissfully preparing the nursery. I remember reading a pregnancy book and how I skipped the pages on Special Care because things like that don’t happen to young, healthy mums like me. How wrong could I have been!

No one spoke to me about the possibility of special care, even though I was carrying twins. No one spoke to me about being a high-risk pregnancy, even though I had swollen up just a week before and had a scan that showed I was carrying twin two very low.  No one mentioned to me that I should start antenatal classes earlier as I was carrying twins and may have a shorter pregnancy. No one told me an awful lot.

As a result, when I did go into labour in the middle of a Monday night at 28 weeks, I was mentally unprepared. After a long labour, twin one arrived by natural delivery and was whisked away by a team of medics, leaving me with a consultant talking to his team about how twin two was in distress – no one spoke to me. 

Isabelle

Next thing, I was whisked into theatre for an emergency C -section and woke to a photo at my bed side of a tiny doll that turned out to be my Isobel; and to a partner who was as shell-shocked as me but with no babies to hold in my arms.  

Of course, I would go on to develop severe post-natal PTSD, anxiety and depression as we battled with our daughters, Imogen and Isobel, through ICU, CPAPs, brain bleeds, oxygen deprivation and so much more that I can’t even remember as my brain has blocked it out.  No one asked me if I needed help, as I sat with my head in my arms sobbing at the side of their incubators. The consultant didn’t know how tiny he made me feel when he turned to me and said ‘ I think you realise what you’ve done now and how serious this is’; still to this day I don’t know what that meant, but it cut through me. Still no one mentioned emotional support for me.

Imogen

10 weeks later, my girls came home, I was overjoyed! However, I had no support group, no Facebook group, no accommodation to live in with my daughters during their 10 week stay in SCBU, all that had made me desperately unhappy, isolated, depressed and extremely confused by how I felt.

9 months later, after home oxygen, nurse visits, physio appointments and feeling trapped in a world that I hadn’t planned, I finally spoke up. I went to see my GP to tell them that I was struggling and was referred for talking therapy. 3 months later, I was still waiting.  So, I contacted PALS to express my thanks for the care that my daughters had received, but to condemn their lack of support for me. That got the ball rolling and 10 months after the trauma or premature birth, finally, my long journey on the road to managing my mental health demons got underway.

Now, 11 years later, my twins are well. They are healthy, they are happy, active, smart and wonderful. But as I write this today, I still cry. I still struggle to be happy for my friends as they have normal births and normal maternity leave. I still struggle with anxiety, to the point where it has affected my social life and career. I still mourn for the loss of the ‘normal’ experience and have never had any more children out of fear that it will happen all over again. I still can’t forget, and I still feel angry about how little emotional support there was for me. However, I am also strong, and my experience has also helped to make sure that families of premature babies now get timely help when their children are born too early or very ill. I tell my story, not to make you feel down or for sympathy; I tell it because I am proud that I used my experience to fight for change.  Now, I know that support is getting better. I know that there are support groups, fast-track counselling, charities that are offering counselling sessions and I also know that my experience will now become a rarity. I can never change what happened and the impact that it all had upon my mental health, but I can change the future and I can use my voice to encourage others who are struggling with mental health problems following premature birth to demand the help that they deserve.

Isobel and Imogen are now 11 years old

With thanks to Louisa Owen for sharing her story and highlighting the mental health needs and emotional impact of premature birth.

To find out more about the mental health needs of parents following neonatal intensive care and how to support families, please see our ‘After Neonatal Intensive Care’ Report.

 

Look but Don’t Touch – Life After Neonatal Care

As I prepared to be discharged from hospital with my tiny 30 weeker, I kept getting told by the staff to avoid supermarkets. I was completely baffled – were supermarkets really such an awful breeding ground for germs?! I solemnly promised the consultant that I wouldn’t go near supermarkets until Luca’s due date. Once we were home, I asked the outreach nurse about the rationale for supermarket avoidance. She said people in supermarkets have a tendency to touch small babies in their prams. I laughed – why would anyone pay attention to me pushing a pram around with a screaming baby?!
Oh how wrong I was.
From the day I felt more confident to take Luca out (around his due date), I’ve faced a constant stream of people trying to touch my baby or asking personal questions. For some reason, a teeny baby seems to be public property. After spending weeks of religiously sanitising hands before touching your baby, the sight of anyone putting their hands near Luca was enough to send me into a rage. Some people just don’t seem to have any concept of a mum and baby’s personal space. I’ve had family members and friends visit us in NICU, longing for a cuddle but knowing I was the only one allowed to hold my baby.
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I didn’t let anyone hold Luca until his due date arrived. He was only 4lb when I took him home. So the very last thing I wanted was strange hands all over his little body in the pram. There have been times where I have rushed around the supermarket close to tears, praying for Luca to stop crying too so I can avoid taking him out of the pram for comfort. My reaction to unwanted contact has been a firm ‘don’t touch my baby – he’s premature’ has had mixed results. Usually, people appear mortified and apologise. But no baby deserves unsolicited contact, premature or term. On other occasions, I’ve received some sharp advice. I should put a blanket over my baby’s pram if I don’t want people to touch. Why am I taking such a young baby outside anyway?! (He was 3 months old at this point). Silly me, for wanting some normality after the horrors of NICU for 6 weeks. Not that I had much choice; as a single parent, if I didn’t run errands, they wouldn’t get done at all.
As the months have passed, it hasn’t got any easier. Luca is now nearly 6 months and has finally tipped over the 10lb mark on the scales. But I’m still stopped regularly by people who want to admire my ‘new baby’. The only thing new about him is his smile, finally! I’ve developed a thicker skin and a few coping mechanisms since discharge:
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– Get a sign to alert people to your baby’s special status. Luca’s ‘don’t touch’ sign has mainly positive results, but there is still the odd oblivious person who thinks THEY are allowed to touch. It also has the unintended benefit of attracting other preemie relatives for a chat. I got our sign from Etsy and another preemie parent has also produced a badge to keep unwanted hands away.
– Wear your baby in a sling. I’ve yet to encounter someone rude enough to put their hands down my top – but never say never!
– Use your raincovers as a barrier. I have looked slightly odd on sunny days but I will use my raincovers in crowded places such as surgery waiting rooms if we’re in a confined space.
– Be firm. I will wheel Luca’s pram out of people’s reach and tell them (abruptly) not to touch my baby.
After the NICU rollercoaster, being rude to someone risking my baby’s health is the least of my worries.
carla-blog
Guest post by Carla, mum to Luca born at 30+6 (emergency c-section for absent end diastolic flow and IUGR)

World Prematurity Month – November 2016

World Prematurity Month, a time for charities, health professionals, families and organisations around the world to come together to raise awareness of the 15 million babies born premature each year.

For me, a mother of two small boys born too soon, World Prematurity Month is an opportunity to reflect upon and highlight the realities of neonatal intensive care; a chance to shine a light on a hidden world and a journey that lasts long after bringing your baby home from hospital.

As expectant parents you make plans, you allow yourself to dream and imagine.. the first hold, the first baby grown, the first feed…. but for parents of premature babies all plans and dreams are shattered as the trauma of neonatal intensive care kicks in. You don’t recognise the world around you find yourself grieving for a baby take from you too soon and placed within the protective walls of an incubator – “A womb with a view” as a friend once said.

Smallest Things

On leaving neonatal care, full of conflicting emotions, you think that your NICU time is done… only there are new challenges to face.

Incubators, life support machines and monitors are behind you, but the memories and worries last. One day you feel brave enough to leave the house. You might visit a mum and baby group – and that’s when then it comes, the dreaded question…

“How old is your baby”?

I know I’m not alone in rounding down my baby’s age and even then I would see the quizzical. I would tell them that my baby was 6 months old, although developing according to his corrected age he looked and acted like a 3 month old.  Next comes the dilemma; either explain that he was born premature and risk being asked often insensitive and upsetting questions or endure the inevitable developmental comparisons. I didn’t like the feeling I was making excuses for my baby – ‘he’s six months old, but really he’s only three months’ I would hear myself saying.

With the benefit of hindsight (and a bit of preemie mum strength), I might now tell those mums that my baby hadn’t quite mastered sitting independently yet, but what he had mastered in those six months was to teach himself to breath, to learn to co-ordinate sucking and swallowing, to regulate his own heartrate and that he trebled his birth weight – pretty impressive milestones I would say!

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Unless you’ve had a baby in neonatal care, or a close relative in that position, you have no reason to know about life in NICU, so I tried to brushed remarks like ‘I could never have left my baby alone in hospital’ or ‘is he normal now?’ aside, but they hurt and I felt alone.

Not only was it the mum and baby groups I began to avoid though, community health professionals, who I thought would be there to support me, also seemed to lack awareness. I lost count of the number of times I was asked if he was smiling yet. Each time I gave the same response – ‘he hasn’t reached his due date yet’! I was forever asking that his weight be plotted according to his corrected age and the six week check was laughable. I felt like putting a big sticker on the front of his read book saying “remember I’m a premature baby!” (Which is why, years later I developed the “Preemie Proud” Red Book stickers!)

I launched The Smallest Things blog two years ago, writing about my own experiences to raise awareness of premature birth and the challenges faced by families following neonatal care. This World Prematurity Month I will continue to write, as well as sharing guest blogs, about a journey that does not end at the hospital doors.

Raising Awareness really does help to make the Smallest Things matter – even if only to help with the dreaded “how old is your baby?” question!

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Don’t forget to follow The Smallest Things on our Facebook Page for all the latest stories and news for World Prematurity Month!

 

My Life as a NICU Mummy

Guest Post by Vicky Jackson, for World Prematurity Month 2016
I remember the day like it was yesterday. I got into bed at 2350, and I couldn’t actually believe this was happening, my waters had broke. I was 32 weeks pregnant.
I went into auto pilot, called the hospital and they said to come in ASAP. My husband and I ran around packing everything we thought we would need including size 2 nappies and car seat (we laugh about this now, not expecting to go hunting around Mothercare in the weeks to come for micro nappies).
On route to the hospital I remember googling about having a baby at 32 weeks and starting to panic. I felt like I had let everyone down especially my baby. I still do blame myself for my little boy arriving so soon. ‘Why couldn’t I carry till full term? I feel guilty he had to spend the first 3 weeks of his life in hospital when he should have been in my womb or at home with me.
When we got to the hospital I wasn’t having any contractions so they said they would give me a steroid injection now and one 12hrs later to help babies lungs mature. Boy did that hurt! And there was a possibility my waters would refill and I could be discharged home the next day, being monitored for the rest of my pregnancy. This made me a lot calmer.
But by 2pm it was another story. My contractions had started!
4pm came and it was time to push, I was scared ‘was my baby going to be ok?’ I had 10 doctors and nurses in the room with me to help my baby when he was born.

ethan

1825 on Mother’s Day, Ethan was born at 4lbs 3, a good size for a 32 weeker. When I heard him cry it was the most amazing feeling ever, he is a fighter I just knew it.  They wrapped my baby up, I had just a quick glance and touch, then he was whisked off in an incubator. Daddy went with him. That was the hardest hour of my life as I couldn’t be with or see my baby.
After an hour I was able to go see my gorgeous boy. I was numb when I saw him, he had wires coming out of him and the beeps from the machines were so loud. Can he hear that? Will he be able to sleep with all that noise? All these thoughts and questions taking over my mind, I felt like I was in a bubble! All I wanted to do was pick him up, run and take him home! I felt lost and empty, my arms ached, I just wanted to hold my baby.
That next evening I was discharged.Leaving the hospital without your baby is the most unnatural thing to ever go through. It felt so wrong and so unbelievably painful. Every day I would get up early and get to the hospital as soon as I could. I would stay there all day.
My life as a NICU mummy was another world, in which I heard the same words daily – Hiflow, Loflow, long line, picline, CPAP, mummy have you expressed today? Making sure you had enough micro nappies,  endless trips to the expressing room,
washing your hands constantly until they were red raw, and wishing the consultant would say today’s the day you’re rooming in.
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Hours passing by I would sit there just looking at our strong gorgeous boy reading to him, singing to him, longing to hold him.  I never thought the first time I would hold my baby I’d be fighting the millions of wires, but that just became my life and the more I was getting Ethan in and out of his incubator the more I was becoming a pro!
We moved up to the ‘Nursery’ section in NICU after day 3 and the nurses like you to do your babies care while you’re there this includes nappy changes, mouth/eye care, temperature and feeds, getting you ready for going home.
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Our son was getting stronger and bigger by the day and eventually his tube came out and I could breastfeed him. He took to it like a pro. We roomed in for 2 days and he did amazing so they said we could go home. Those were the words we had longed for since the day he was born, but I was so scared to take him home. I even asked if I could take one of the machines with us and even looked at how much they were, those beeps were my life for 3 weeks.  Going home was the most amazing feeling ever!
Our son is doing amazing and is now 7 1/2 months and over 20lbs! He is a joy to be around and is meeting all expectations, we are so overly proud of him. I have met some amazing mummies from NICU and I know we will be life time friends as we have one thing in common.
Our sons are NICU graduates!
If you have a story to share like Vicky, please get in touch with Catriona e. smallestthings@yahoo.com

MPs back extended leave for parents of premature babies

Yesterday, Steve Reed MP introduced a bill to parliament, calling for extended parental leave for mothers and fathers of premature babies.

The bill, which has gained cross party support, is now scheduled to be debated on 16 December 2016.

steve-reed-mp

You can watch again, as Steve Reed MP introduces the #PrematurityBill here.

The campaign is beginning to get the publicity it needs!

Born too soon, mothers of premature babies spend weeks or months of their maternity leave visiting tiny and often critically ill babies in hospital. Steve said;

“Having a premature baby is one of the most traumatic experiences that any parent can go through. Instead of bringing home the healthy baby they had longed for, their tiny baby is put inside an incubator, fighting for its life, surrounded by tubes, wires and bleeping monitors. Instead of holding their baby close, these parents can only watch as their baby struggles to breathe, dependent on life support and intensive care.”

More than 110, 000 people have now signed the petition to extend leave for families of premature babies and the campaign has been receiving high profile media attention.

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Is change is possible?

YES, and the precedent has already been set. New Zealand currently offers extended leave, as well as other European countries such as Finland, Iceland and Croatia.

Will change happen?

YES!  With the support of the public and cross party parliamentary support for the bill, change can happen!

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2014 in review – Thank you!

The WordPress.com stats helper monkeys have prepared a 2014 annual report for the Smallest Things site! | Launched on the 20th September 2014 our ‘annual report’ is made up from the stats of the last 3 months –

“A New York City subway train holds 1,200 people. This blog was viewed about7,500 times in 2014. If it were a NYC subway train, it would take about 6 trips to carry that many people.” 

Click here to see the complete report.

We would like to say a huge THANK YOU to everyone who has supported us in reaching such a wide audience in just a few months. We look forward to continuing our work in 2015 and with your support reaching ever more people to raise awareness.

 

Love & hope at Christmas time

10882257_1525508937705599_5809473278853052459_nThank you to everyone who shared pictures of their Christmas NICU over the weekend. Your pictures have been shared far and wide helping to raise awareness reaching a larger audience. Do join us on our Facebook page for all the latest news and converstation if you haven’t already done so.

7,000 babies will spend the festive season in neonatal care this year, and we thank the fabulous NHS staff who will take time away from their own families to look after babies born too soon and their parents. Whilst giving thanks we also remember the families who have lost babies born too soon and for whom Christmas may bring added anguish.

We have written before about how to support parents of prem babies in hospital, and our Top Ten list is as important as ever this holiday season. Premmie Babies 101 also have a great article on Including a Sibling in a NICU stay as parents find themselves torn between caring for a child in hospital and a child at home.

Whether you are spending the time in NICU, remembering a loved one or celebrating your Christmas miracle, The Smallest Things wishes you love and hope at Christmas time.

____________12 days of NICU

 

 

 

One photo tells our story

sam photoThis is a very special photograph. My husband took it in the rooming-in-room as he left for work. That afternoon we were going to bring our baby home from hospital. We were both so excited. As I prepared for the discharge my husband texted me to say he’d almost skipped up the stairs at work trying to contain his excitement. In the picture you can tell we’re ready to go home. I’ve had my hair cut – cut the day before because when would I have time once my baby was home! Sam is looking smart, ready to go home in the cutest baby grow; the smallest one you can buy, but still miles too big for him! It is the first photo we have without any tubes or lines obscuring his perfect little face, and he has his hospital blanket, which his little brother is now almost surgically attached to!

Just a few hours after this photo was taken Sam was suddenly rushed back into intensive care – once again covered in lines and tubes, attached to beeping machines. It is still the hardest thing I have ever had to do; to telephone my husband to tell him that our previous little boy was not coming home, that we were right back where we had started. My world crumbled around me as I told our nurse I couldn’t go home again without my baby. Yet I knew I would have to and tried not to think of the empty moses basket waiting for him at home.

In one single photo our journey in neonatal care can be summed up – the elation, love and happiness on one side and the roller-coaster of uncertainly and the pain of the ups and downs on the other. It is such a special photo, reminding me that this was our journey. A difficult but special journey, and one from which  Sam is even more loved.