Watching a large number of medical staff gather around my baby to resuscitate him was the scariest thing I have ever been through.
It was Boxing Day 2019. Over the course of Christmas day I had become worried at how unwell Carter was getting and I spent that night awake by his side. He wasn’t feeding properly and would scream then suddenly become quiet. I was already extremely cautious and anxious as we hadn’t long been out of hospital as Carter was born a month early and had to be kept in because of jaundice. By the time morning arrived, my husband Sean and I were so worried that we drove Carter to the emergency room at Addenbrooke’s Hospital in Cambridge which was an hour away. As I took him out of his car seat, I knew something really wasn’t right. I rushed him into A&E and handed my tiny baby over.
We saw everything and felt helpless. Eventually they managed to stabilise Carter, but he needed help with his breathing so they prepared to intubate him before moving him to the Paediatric Intensive Care Unit (PICU). Carter had developed RSV (a respiratory virus) from a cold and as a result was experiencing breathing apnoea due to a build up of mucus in his lungs. He was too small to fight it all off, and every attempt at breathing was exhausting him.
We were taken to see him in PICU where he was covered in tubes. It had been such a whirlwind from the moment we arrived at the hospital that seeing Carter like that was really hard to take in. I just sat there, looking at him and felt my heart break into pieces.
Not once did I think about where I was going to stay, although I knew we were likely to be in hospital for a while. When Carter was born, we had to stay in for some time afterwards but I could stay with him. Here, in PICU, there was just the chair that I was sitting on. I wasn’t prepared to leave Carter and realised I would have to try to stay awake in that chair until he got better.
I didn’t have to think or worry too much about how I’d cope as I was handed the keys to Acorn House. Acorn House is run by The Sick Children’s Trust and before I needed the charity’s help, I had no idea these ‘Homes from Home’ existed. I was a bit hesitant at first as it still meant leaving Carter’s side and I didn’t want to be without my baby. However as the nurses told me more and more about it, I felt comfortable to leave his room and see it for myself. When I arrived at Acorn House, I felt at home. There was a kitchen, living room and even a playroom so I knew straight away that I could bring Elsie, Carter’s older sister, when the time was right.
That was something that became hugely important for us during the time we were at Acorn House, having a place away from the hospital that Elsie could visit. It was traumatic for me to see Carter as he was in hospital, so I didn’t want Elsie to see him like that. For her to be able to come into a homely place that was so different to hospital and have mummy time made such a difference to her. Not only did she miss me, but I really missed her.
As Sean returned to work, I spent a lot of time by myself at the hospital. Carter remained on the wards just short of two weeks as a machine took over his breathing for him so that his body could rest and recuperate. The days on the hospital wards were long and as hard as it was to leave Carter’s side, going back to Acorn House and being able to have a shower and a sleep was what I needed.
There were days I felt devastated and could go back to Acorn House and cry in private, but equally I knew there was always someone to talk to when I walked through those doors – whether that was the house staff or other families – and be given a cuddle. There was one couple who were really supportive towards me, which I’ll never forget. It was on the first day that they tried to remove Carter’s breathing tube, it didn’t work and it felt like a massive knock back. This couple offered to come with me back to Acorn House to just sit and talk. It really meant the world to me in that moment, as I didn’t feel alone.
New Year’s Eve was tough as everyone in the world looked forward to the start of a new decade, I couldn’t see past the next hour. I stayed with Carter as late as I could before I walked to Acorn House. In the distance I saw through the windows adults and children still up and about. I walked through the doors and there was such a sense of togetherness. We were all in the same boat, we didn’t want to be there, or particularly celebrate, but we all hoped for a better New Year.
On the third attempt to remove Carter’s breathing tube it was a success, and he started breathing on his own. I remember being able to hold him for the first time and feeling overwhelmingly in love. Things started to look up and we looked ahead to Elsie’s fourth birthday, which was a couple of days later. We held a little party for her at Acorn House to make her feel special. As we celebrated, Elsie got the best present ever – her little brother was allowed to come home that evening.
Our life was really thrown upside down, from a problematic pregnancy, premature baby and Carter getting rushed back to hospital with a hernia, resulting in an operation shortly after. Then to me, having to stay in hospital away from the children seriously ill, and of course the pandemic. Carter is almost a year old now. He’s crawling away, pulling himself up and is really happy despite us not being able to do all the things you would normally get to do with a baby his age because of the restrictions.
I can’t help but be anxious towards Christmas as I’m constantly thinking what if he does get poorly again. Winter’s coming and I know that babies are more susceptible to getting ill, especially premature babies, but I know Acorn House is there if something serious does happen.
I’ll be encouraging people to think about families like mine this Christmas, who suddenly end up in hospital with their critically ill child. Having The Sick Children’s Trust’s ‘Home from Home’ really made the world of difference to me. No one wants to be away from their baby, no one. I could go back to Acorn House and have a hot dinner if that’s what I wanted, sterilise bottles and express. I was never alone as I was with others going through something similar and that helped me get through it all. Without that interaction in the ‘Home from Home’ the whole experience would’ve been a lot harder and I don’t think I would’ve coped.
Georgie Monigatti, Carter and Elsie’s mum