Additional Needs

NICU Awareness Month

Posted by Stephanie Swann on 20th September 2020 Additional Needs, Advice & Support, Disabilities

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Before having my son Joseph, I knew that the NICU existed, I had walked past it several times on my way to appointments when I was pregnant.

However, I didn’t know that there were different levels, the extent of my knowledge was that it was where premature babies were treated as I had spent a couple of weeks in neonatal as a baby myself with slight jaundice. I hadn’t ever thought about what would happen though if my own full-term baby was born seriously poorly and fighting for his life. Ignorance is bliss.

My son Joseph was sent straight to the Neonatal unit at our local hospital almost immediately after he was born. He was born via natural delivery at 37 weeks gestation. For unknown reasons Joseph was born in very poor condition. The doctors and nurses tried hard to get him breathing on his own but eventually they sent him to be intubated (put on a ventilator, which for anyone that doesn’t know, is a machine that breathes for the patient).

I understood when the doctor told me he had suffered from hypoxia that this meant lack a of oxygen to the brain. I knew this because 7 years earlier my Nana had unfortunately suffered from severe hypoxia whilst in intensive care following major surgery. This had ultimately led to the doctors deciding to withdraw her life support. So as soon as the consultant uttered that word after they’d whisked my new-born away, I think I went into shock.

I don’t remember even having much of an outward reaction to her words.

I remember being told that Joseph needed to be taken to another hospital with a level 3 Neonatal unit to receive hypothermic cooling therapy. I wasn’t even aware that there were ‘levels’. Within a matter of a few hours, he was transferred to another hospital around 45 minutes away.

The doctors and nurses at this hospital, to this day remain some of the most competent, compassionate medical professionals that I have ever met. (I’ve met a lot!).

They really were a beacon of light, guiding us through a dark tunnel that was to be the beginning of our journey onto the path we now find ourselves on.

From the minute we arrived, nothing was too much trouble for the staff. They took care of us as much as they took care of Joseph. Parking was taken care of, a room for us to stay in just across the corridor was taken care of, all of our meals were taken care of, we were even given staff discount vouchers for the hospital café!

This blew my mind completely as I saw first-hand how tirelessly these staff worked for up to 12 hours a day in such an intense environment and yet they still managed to do so with a smile. They still managed to find the time to do everything in their power to make our life just a little bit easier.

They still managed the time to chat to us, to comfort us, to answer our relentless questions, to explain what all of the unfamiliar equipment was, to give us reason to hope and to teach us how to carry out all of the medical cares that Joseph needed.

I remember being filled with such overwhelming feelings of respect, admiration and gratitude for these incredible people that if I thought too much about it, it would reduce me to tears.

Though we were only at this level 3 unit for 2 and a half weeks out of the huge chunk of time Joseph came to spend in hospital, the impact that it had on me emotionally will never leave me.

I felt terrified when it was time for Joseph to be transferred back to our local neonatal unit at the hospital where he was born. Although I knew it was a positive step in the right direction, the thought of leaving this bubble that I’d come to feel so safe in absolutely filled me with dread.

I needn’t have worried so much though as we were very warmly welcomed back to our local hospital by a team of wonderful staff on the neonatal unit, that during almost 5 months spent there, came to feel like extended family to us.

The NICU is a very unnatural environment to spend so much time in as a new parent.

We were constantly surrounded by a cacophony of beeping machines. I remember finding it strange because it is quiet and yet noisy, bright and yet dark and the time seems to pass slowly but fast all at the same time. It’s hard to understand what I mean by such contradictory terms, unless you have experienced it first-hand.

I found it quite upsetting that for so long we were unable to spend any real quality time with our baby on our own as a family and we had to leave him there every night to come home. His absence filled every room in the house, despite the fact we had yet to bring him home. I saw it in the empty Moses basket next to our bed. I saw it in the freshly sterilised bottles we wouldn’t need as Joseph was tube fed. I saw it in the many gifts, clothes and baby paraphernalia scattered, unused around our house.

Despite this, staff were so good at allowing me to take things in from home so that it felt a bit more homely in his little corner. One lovely nurse found Joseph some amazing sensory lights to go around his cot and this was the first thing that I noticed him really looking at and enjoying.

It was particularly difficult being in the NICU with a full-term baby. I was surrounded by premature babies. Everything was geared towards premature babies and I often felt like we didn’t belong there. The literature we received about HIE (Hypoxic Ischaemic Encephalopathy) was so limited.

One thing I’d like to see change in the future on Neonatal intensive care units would be more information and help for parents of children with HIE and other conditions. Not all babies in need of intensive care treatment are born early and this is a common feeling amongst parents of poorly full-term babies. I know this is something that charity peeps hie are working hard to improve, which is such a positive step forward.

Another thing that I struggled with was the fact that Joseph had never been outside into the world. During particularly dark thoughts, I would worry that we’d lose our baby having never been able to take him outside of the hospital.

One day when Joseph was around 3 months old, a very special nurse made something incredible happen for us. She arranged for us to take Joseph out for a walk around the hospital grounds. It was a military operation, but I will never be able to articulate how wonderful it was to finally see him with the sunshine on his face and to watch him absorb all of the new exciting sights, sounds and sensations.

As I gradually became more confident at being outside with him and all of his equipment, I was soon able to take him out unassisted for daily walks, and my partner was able to join us at the weekends. I finally started to feel like a real mum and that tiny bit of freedom worked wonders for my mental health. I owe that to the lovely nurse responsible for organising this, who I still keep in touch with to share Joseph’s progress.

The staff in the neonatal unit did everything they could to make us feel as comfortable as possible and they supported us for 5 long months whilst Joseph lived on the unit. I say lived because that’s genuinely how it felt. It felt like that was Joseph’s temporary home and we were just visiting him whilst we waited for him to be able to come home with us. We were eventually allocated a room when Joseph was around 4 months old so that we could spend some time each day together away from the bustling and beeping of the neonatal nursery room.

The staff on the unit operated a parent led approach that they took from day one.

I felt like our roles as Joseph’s parents were the main focus and priority of the staff and in turn, influenced the way that they cared for him. I think it’s so easy for parents to feel as though their baby doesn’t really belong to them when put in these situations but I knew that the staff did everything they possibly could to combat that, and to ensure that parents were bonding with their babies.  The staff, I felt were very much led by the parent’s thoughts, feelings and wishes.

The NICU is not somewhere as a parent you ever want to find yourself, but having experienced it, I can’t even fully express how eternally grateful I am to all of the NICU staff. I owe everything to them. They saved Joseph’s life on more than one occasion and they helped to guide us in becoming the type of parents that Joseph needed us to be.

There is a certain quality that people in this role have that I can’t quite put into words, it goes above and beyond empathy, love and compassion. What I can say though is that each and every one of them will be forever special to me, Joseph and all of our family for supporting and caring for us so well during the some of the most difficult and worrying times in our lives.