‘What I wish I’d known…’ Charlie’s story

Charlotte Perry, Charlie’s mum, was supported at Eckersley House when her son was born at 31 weeks.

World Prematurity Day takes place on Sunday 17 November and is a global movement by organisations across the world to raise awareness of premature birth and the impact it can have on families. The Sick Children’s Trust is joining the charity Bliss to ask families what they wish they’d known to help others going through a similar experience. We talk to Charlotte Perry, Charlie’s mum, who was supported by The Sick Children’s Trust in one of its ‘Homes from Home’, when her son was born at 31 weeks.

“I wish I’d known that the preemie journey can start before birth.”


Our superhero’s journey started before he even entered the world. When I was eight weeks pregnant, Glen and I were told that there was a problem with Charlie’s heart which was later diagnosed as coarctation (narrowing) of the aorta. This was the beginning of the worries, stresses and concerns as we knew that it was likely that Charlie would need heart surgery when he was born.


Two months ahead of my due date, I was diagnosed with a pregnancy complication known as preeclampsia and was in hospital five times before the doctors decided at 31 weeks that they had to deliver Charlie.

Charlie arrived safely weighing a small but mighty 3lb 3oz. I didn’t see his perfect little face or body as he was wheeled straight off to the Neonatal Intensive Care Unit (NICU).

“I wish I’d known that it’s OK not to be OK.”


After weeks of worrying about his arrival, to then go through another six weeks of being on the edge is emotionally and physically exhausting.


I had to stay in the Intensive Care Unit (ICU) for 24 hours after Charlie’s birth. Knowing that I had brought a human into the world who I was unable to cuddle until the following morning was literally hell. I kept imagining what his face looked like and how it would feel to have those teeny, fingers wrapped around mine. Did he have my eyes, my nose, daddy’s lips, daddy’s ears?


For six weeks Charlie was in hospital and it was really tough. Probably the worst time of my life, but also the most precious and miraculous. Although, at the time, I couldn’t see past a few minutes or hours, let alone days.


One of the biggest things I wish I’d known is that it’s OK not to be OK. It gets very lonely in NICU day in, day out if you do it alone. For any other parent going through it I would encourage you to talk to other parents on the unit. They are going through the same things as you are, and they could probably do with a friendly smile or chat as much as you can. Also, try to look after daddy too – he might not be OK. Everybody always asks about baby and mum and dads often get missed out even though they are probably in as much distress as us, and they often have to go to work on top of visiting the hospital too. It’s so important to not forget that daddy has been waiting for his cuddles and kisses as much and mummy.

“I wish I’d known how many support systems for parents are in place.”


When I was told I was well enough to be discharged I couldn’t process the information. I’d forgotten that this moment would eventually arrive. In fact, my home was by my baby’s side, and there was no way I could ever be far away from him. I was so angry that nobody seemed to understand when I said I simply couldn’t leave the hospital and be away from my son.


Thankfully, I was advised by a nurse on the ward that there was a charity that could help by offering me a room to stay in, just minutes from Charlie’s incubator. The charity was called The Sick Children’s Trust. Within the hour I’d unpacked all my clothes and toiletries into my cosy room at the charity’s Eckersley House. The ‘Home from Home’ was such a lovely environment. I was surrounded by families in similar situations and we would often chat about our experiences in the communal kitchen and living area, which helped me to start feeling like myself again.


Thanks to the support of The Sick Children’s Trust, I was able to stop worrying about the practicalities of my situation and concentrate on simply being Charlie’s Mum.


“I wish I’d known that there’s no such thing as too many questions.”


It’s your baby – speak to someone if you’re not happy with something or need clarification about his/her notes, the way they are being treated, if you feel something’s just not right.

“I wish I’d known that the preemie ups and downs continue after NICU.”


Six weeks is a long time to be in hospital with your baby and you become used to what to look out for. The NICU teaches you to watch your baby and learn to read signs that they are unhappy/uncomfortable which is great but this becomes really difficult to wean yourself off when and if your baby gets to the stage of not needing them anymore – so try not to rely on the SATs machines. This was one of the hardest things for me to do, as you fall into the comfort of being able to glance at the machines to check on your baby.


Be prepared for flu season!  Once you and your baby are out of NICU, the preemie struggle still continues – don’t be naïve and always follow your gut if you think something is not right.

We give families with a seriously ill child in hospital a comfortable place to stay and a friendly ear to listen in one of our ten ‘Homes from Home’. Providing families with somewhere to stay together just minutes from the hospital means that they can be by their sick child’s side and have one less thing to worry about.

To give a family with a premature baby in hospital a place to stay in one of our ‘Homes from Home’, donate £30 today.

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