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The NICU is the Neonatal Intensive Care Unit. My son was a full-term baby who spent 31 days on NICU in 2017. He was born with 2 lesions on his left lung – one of which was removed at Great Ormond Street Hospital when he was 19 days old. The other remains in his lung, but as it doesn’t affect him, the surgeon decided it was best for leave it be. They keep an eye on him with annual checkups and we’re aware of any symptoms that would require their attention. After this surgery, we were transferred back to our local hospital where he finished his recovery, and we were able to start breastfeeding before he was discharged.
NICU isn’t an area of parenthood that is often discussed. I guess you could say it is a taboo subject. I know that I, and other NICU parents have wanted to almost ignore our feelings following our baby’s discharge from hospital, simply because we know how fortunate we are to have taken our baby home. There are so many families whose little ones don’t make it home from NICU and so we ask ourselves, what do we have to complain about? There is also the fact that those around us don’t necessarily understand our feelings about the NICU experience, which in turn means that we talk less about it. I personally think NICU is a very broad term as not all NICUs necessarily mean Intensive Care. There are so many common misconceptions surrounding NICU and so, as a mum who had a baby on a NICU, this is what I would like you to know…
I admit, I wasn’t overly aware of why term babies may need to go to NICU and I thought it was a place just for babies who didn’t get to full term. Whilst we were there, my son was the only term baby in intensive care and was considered “the big one” by staff because they were used to premature babies under their care. There are a multitude of reasons as to why any baby may need additional care under NICU, and don’t forget, NICU doesn’t always means that baby needs to be under Intensive Care.
When you’re on the outside looking in, it is so easy to assume that once baby is home, all is well with the family. I can tell you firsthand that this just isn’t the case. It takes time to process that time you’ve spent in NICU. It’s possible that months down the line, those feelings surrounding NICU can creep up on you. I thought I was fine – and it wasn’t until 12 months later that I realised that I needed support. Mental Health support after NICU can be few and far between depending on where you live. Some parents have been offered enough support whereas others haven’t been offered anything at all – so if you know any NICU parents yourself, be sure to keep checking in on how they feel.
No two babies are the same, and likewise, no two parents are the same either. Every family will have their own circumstances around NICU and so you cannot compare experiences, nor can you expect people to process their experiences in the same way. There is no guidebook for parents, and they should be given the space and time to feel whatever they need to about their situation. I know that I had certain feelings about our time in NICU that I was afraid to say out loud or admit to myself – NICU parents need to know that whatever they feel about it is perfectly normal, no matter what those feelings may be.
There are some big misconceptions here around how the parents of NICU babies must enjoy being able to sleep through the night whilst we have doctors and nurses to look after our baby. I broke down in tears every day that I had to leave my son to go home – it felt so wrong and unnatural. While my son was in hospital, I would rather have had a night of no sleep than have been without him. Let’s also not forget that those mothers who are wanting to express breastmilk will be forced to do so every 2-3 hours and that includes overnight. I expressed for my son and waking in the middle of the night to an alarm clock and not a crying baby was a lot tougher than you would think. It was yet another reminder of the reality that my son wasn’t well enough to be at home with us.
Just because our babies have made it home from hospital, it doesn’t mean that all is forgotten in terms of what our families have been through. For some parents, professional support will be required to work through any trauma or feelings surrounding NICU that they may be struggling with, whereas others may feel that they don’t need any additional support. Neither is right or wrong.
NICU is not an easy experience. It isn’t part of the plan when you see a positive pregnancy test. As a parent, it’s easy to feel alone, isolated and misunderstood during and beyond that time. And because those of us who have experienced it don’t always discuss it openly, it makes it difficult for others to understand.
And that is why I am here. To raise awareness of the realities of a NICU parent, in the hope that some of you reading this may then have a better understanding of what NICU entails, allowing you to better support a loved one in the future, should they find themselves in NICU.