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NICU Loneliness and Guilt – Do They Ever Truly go Away?

When you get pregnant loneliness and overwhelming guilt aren’t emotions that you think you are going to feel. You are filled with dreams and hopes and expectations just like anyone else – you feel part of a community. But when you have a premature baby loneliness and guilt are just some of the many emotions that you feel. 

Like everyone else I never thought it would happen to me. I vividly remember sitting on the sofa telling my husband that a woman I was in school with had her baby at 27 weeks. That was like me going into labour in a week – can you imagine

What I now realise is that I am that woman – referred to by others so flippantly without realising the magnitude of that persons experience, as exactly a week later I went into labour. A marginal placental abruption resulted in my son being born weighing in at 2lb 3.


Guilt is one of the very first emotions you feel when you have a premature baby, and not just a small amount, an overwhelming, crushing guilt. The million and one things that you did that could have caused your premature labour run through your mind. Never in my life have I been so surrounded by caring people and yet felt so extremely lonely. 

For the first time in my relationship with my husband I felt alone even from him. As one now lifelong NICU friend once said to me – not even our parents can understand. They say they worried about us but they never had to worry whether we would walk or talk or even live. So you feel lonely even from your family.

After 9 long weeks spent in two different hospitals we were able to bring Xander home. However, even after NICU life has ended and you are back into some sort of normality, every now and again that loneliness will reappear. 

When your friends who carry to full term compare their pregnancies and labours and yet steer clear of asking you about yours – for fear of upsetting you. This takes you back to that lonely place where only people who have been there can relate. Simple things like seeing a woman in her third trimester or attending a baby shower can bring all these feelings flooding back. It doesn’t mean that you aren’t happy for that person, quite the opposite, you are beyond happy that they won’t go through what you went through and yet that loneliness creeps back in.

So do NICU loneliness and guilt ever go away? 

For me it comes and goes but I know I’m still on my healing journey. But with my sons 1st birthday fast approaching I look at him and realise that actually I could never be lonely, not with my warrior by my side. 


Regarding guilt – this is something that I am still working on and that I think I will always be working on. It will live with me forever, easing ever so slightly and then suddenly hitting me when I am trying to sleep. It is something that has eased over time and that I hope will continue to ease.

And would I do it all again?

In a heartbeat – it has made me a stronger person, me and my husband closer and given me a new appreciation for life. And most importantly of all it gave me my cariad (my love), my boy. And I’ve realised that I am still part of a community, a wonderful one, just not the one that I expected to be.

 

With thanks to Samantha Burvill for sharing her story. 

If you have a story you’d like to share please email Catriona at smallestthings@yahoo.com

Like what you’ve read? Want to help us raise awareness? Then use the Facebook and Twitter buttons to share Samantha’s story. 

Premature Birth: Being Your Child’s Voice

Nova’s Story:
I remember the day Nova was born as though it was yesterday. 

My fiancé had left for work, and I was home alone. Nova had been moving less and less the past few days, and on the day she was born she hadn’t moved at all. Whilst he was at work I decided enough was enough and rang up triage at the hospital and explained about the reduced  movements. They wanted me to come in there and then. I got my fiancé to leave work and we went straight in. 

When we got there it felt like we were waiting forever in the waiting room. Luckily, they managed to find Nova’s heartbeat, and it was nice and steady. Unluckily, I had protein in my urine and was diagnosed with severe pre-eclampsia. Apparently my blood pressure was through the roof and the doctors were shocked I was still walking at the time! I was admitted straight to hospital  and over heard the hospital staff talking about delivery. 

All I could think about was how could my baby live, she wasn’t ready to leave my body.

She wasn’t due until November, and it was only August! 

The amount of guilt you can feel about your own body is unreal. I felt (and still feel) as though I had failed her. A guilt I know many women in my situation feel.

Nova was delivered within the hour by emergency c section. The placenta was not providing her with enough nutrients and oxygen and she was better off out than in. 

She was a tiny 1lb 12, which was very small for her gestation and by all accounts she was partly blue due to the low amount of oxygen she was receiving. 

I got a quick glimpse of her bundled up before she was whisked off to the neonatal intensive care unit (NICU) and I was taken to the high depndancy unit (HDU). 


For the next 24 hours I was hooked up to a magnesium drip and bed bound. I couldn’t see my daughter. All I had was a few pictures my fiancé had managed to take when he visited her. 

To this day those pictures still make me cry. She looked so tiny and helpless. She didn’t belong in an incubator, she was meant to be inside me. I was allowed into the NICU the following day, and I managed to hold her hand. She was so small it only just wrapped around the tip of my little finger. She was on a ventilator and was, for the time being, stable.

The following day however Nova had a sudden turn for the worse. Her oxygen sats were dropping and the ventilator wasn’t working anymore. My fiancé and I were told that there was only one treatment option left, and if it didn’t work she would die. 

They we’re allowing the treatment to take a couple of hours to work, if it didn’t work it never would and we were told to prepare to say our goodbyes. 


I was a nervous wreck waiting in my hospital bed for the news that the treatment was working. Nothing can ever prepare you to give birth so early. I don’t know how I would feel if I had had to say goodbye to her after only a couple of days and luckily the treatment did work. Nova had a relatively settled NICU stay thereafter.


In time, I was allowed home. Despite recovering from major surgery, I still managed to walk to and from the train station to make the journey to hospital everyday. I probably did overdo it, but NOTHING would stop me from being with my daughter. 

After 69 days in the NICU, Nova was allowed home. She came home on oxygen, due to being diagnosed with Chronic Lung disease. She was only on it for a few months before coming off and we will be forever grateful to the staff at Birmingham Women’s Hospital, who spent countless hours looking after Nova when we couldn’t be there. Without the dedication and support of their staff we wouldn’t have a daughter to take home. Me and Nova both owe our lives to the NHS. 

Nova is now nearly 15 months old, and is a happy, smiley, giggly little girl. She does still have a few health problems. She was recently diagnosed with a rare form of epilepsy called West Syndrome. It affects roughly 1 in 3000 infants in the UK each year. We’re not sure if it is a result of her prematurity, but the doctors haven’t ruled it out.

West Syndrome (Like in Nova’s case) is very often misdiagnosed. Nova was misdiagnosed with a reflux flare up. It turns out she was having seizures! 

I don’t have any ill feelings towards the doctors who misdiagnosed her though, they can only be experts in so many conditions. One of my biggest regrets is not pushing harder for a diagnosis when I knew something was wrong. Early detection and treatment is key for a better outcome with West Syndrome. Unfortunately for Nova, by the time she was officially diagnosed her eyesight had gone, and she had regressed developmentally to that of a newborn despite being almost 9 months old. Although she is 15 months old now, she still cannot see properly and cannot sit, crawl or walk. 


If the reader can take anything away from this, it is to always push if you think anything is wrong. You are the only voice your child has. 
With thanks to Rebecca Bradley for sharing her story, raising awareness of premature birth and West Syndrome. 

If you experience reduced movements or have any concerns through pregnancy, like Rebecca, contact your midwife straight away

Do you have a story to share? Contact Catriona at smallestthings@yahoo.com

Like what you’ve read? Would like to help us raise awareness? Then use the Twitter and Facebook buttons to share! 

Watch! The #NotMatLeave Film

We are hugely grateful to the film company Little Whale for producing and sharing their own story in support of our #NotMatLeave campaign.  

Check out their short film here –

If you like the film as much as we do then please help us to share the #NotMatLeave message far and wide. It’s easy – just click on the Facebook and Twitter buttons now! 


Sign the petition! Extend Maternity Leave for Mothers of Premature Babies. 

The Uncertainly of NICU – Joshua’s Story

My son Joshua was born at 28 weeks, on Mother’s Day this year. 

It was a complete surprise! I had been suffering with pains a few days before but was assured that this was just Braxton Hicks. Then in the early hours of the morning of 6th March I woke up bleeding heavily. We raced to the hospital with just my maternity notes and were told I was already 3cm dilated and that the baby would be born very soon. I had suffered a placental abruption.

My husband and I could not believe it and I was in complete denial, truly believing I would surely be sent home soon and told to rest. But sure enough, 5 hours later he came. He weight 3 pounds. I had been given steroids to help his lungs develop but given the speed of delivery there was not much time for them to take effect. Joshua had to be resuscitated at birth as his lungs were so under developed. The transport team arrived very quickly to take him to a higher tier hospital and there begun a 7 week stay in hospital for us. 


The first 24 hours were probably the hardest. No one was willing or able to give us any assurance that Joshua would be ok. I felt incredibly guilty and stupid that I had not realised anything was wrong sooner. I tortured myself by going over every detail of the week before, trying to pin point a cause. I couldn’t accept that it was not my fault in some way. We also just didn’t know what to expect. Thankfully his first brain scan was clear and when they took him off the ventilator he was able to breath by himself with some high flow. He had a heart murmur but we were assured this would most likely close by itself. Finally we felt able to hope for a good outcome. We started to feel very lucky.
After 4 days we could finally hold him, it was magical. 

Joshua did very well during his time in NICU. He was even breathing in air by the time he got moved to SCBU. However, it was in SCBU that the usual bradicardia episodes and Apnea really begun. Some days his alarm would go off every 20 minutes. It really felt like he was going backwards. He was put back into oxygen and for a while it felt like every day it was turned up another notch and I couldn’t see an end to it. His weight was increasing and he had reached the hospital discharge guidelines of 35 weeks but he was still oxygen dependant. We were told he may go home on oxygen. 

I had been expressing milk for him and I wanted to breastfeed him when I got home. This was a challenge! Trying to convince a tiny baby who had been tube fed for 7 weeks to work for their food felt like an impossible task and it nearly broke me emotionally. However, with determination, perseverance and the help of an excellent SCBU nurse, who dedicated most of her entire shift to helping me, he finally started feeding. I was able to feed him for 7 months when I got home, until he decided food was far more exciting!

Thankfully, during the last week of our stay, Joshua decided he was not going to go home on oxygen and just stopped having Apnea’s one day. We were told this could happen, I just never imagined it actually would. Again, we felt so lucky and relieved. 


We had a great outcome with Joshua. Much better than we ever imagined at the start. He is a happy little 8 month old baby now, enjoying baby sensory, baby yoga and play groups. 

The first winter is hitting us hard. He is in about his 11th virus already. However, he never lets this get him down and always has a cheeky smile on his face. 

All of the staff in the 3 hospitals were exceptional. We had stays in st Peter’s Chertsy, William Harvey Ashford and QEQM Margate. They encouraged us to get involved with Joshua’s care as much as possible and this is what got us through the experience. In the first 24 hours I felt like a spare part – I didn’t think there was anything I could do for him and I was scared to get too attached. When I did start expressing milk, changing nappies, top and tailing and kangaroo care, I really felt like a mum to Joshua and that I was helping him in some way. 


A nurse told me during one of my most down days that I know my baby better than any doctor or nurse and that I can help by being his advocate and his voice. This was one of the best pieces of advice I have ever been given.


With thanks to Louise for sharing her story of premature birth – a true NICU ride of ups and downs!

If you have a story you’d like to share please email Catriona at smallestthings@yahoo.com 

Like what you’ve read? Would like to help us raise awareness of neonatal care and beyond? Then Please Share via the Facebook and Twitter links! 

World Prematurity Day 2014 – Take Action Now!

imageCelebrated in over 60 countries, World Prematurity Day sees organisations from across the globe come together to recognise and raise awareness of premature birth. The Smallest Things campaign will be raising awareness of the difficulties faced by parents of babies born too soon and hope that you will join us in a day of action. With four weeks until WPD on the 17th November you can take action now!

  • Write to your MP – here’s how. Ask them to support the Bliss ‘Its Not a Game Campaign’ to extend statutory maternity leave and pay for parents of babies born early
  • Ask others to join our campaign!
  • Share our website and Facebook page on social media. You can follow on Twitter at @_smallestthings and tweet using the hastags #SmallestThings and #WPD

Details of our Day of Action 17th November 2014 coming soon….

Welcome

Nothing 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, alarms, 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 word 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 the campaign to;

  • Raise awareness and understanding around premature birth
  • Support the BLISS campaign to extend maternity leave and statuary maternity pay for parents of premature babies
  • Campaign for better follow-up care for parents
  • Provide advice for family and friends