We’re so lucky that we had a ‘Home from Home’. I don’t know how others do it
Our daughter Lily was a happy and healthy six month old baby when our world was turned upside down within the blink of an eye. She caught a life-threatening type of meningitis – meningococcal septicaemia.
Literally an hour before we noticed she was poorly, we have a video of her smiling and laughing, it all happened so fast. We were enjoying a perfectly normal family day out when Lily started to behave strangely. She was shivering from a very high temperature and breathing with a moan – something she has never done before. Ten days earlier she’d had bronchiolitis and we thought it had cleared up, but these symptoms frightened us and made us worry that something was wrong so we decided to go to the nearest A&E which was Watford General.
When we arrived, Lily’s temperature had reached 39 degrees and we were told that it wasn’t bronchiolitis but she had an infection somewhere. As we waited for a bed to become available, Lily’s condition began to deteriorate. She just wasn’t herself. She was so lethargic; her eyes were glazed over, she had severe diarrhoea and couldn’t keep anything down. Plus every time we went to pick her up she would let out a horrible high-pitched cry. As the nurse checked on Lily, I noticed three red spots on her back and pointed this out to the nurse who called the doctor. My mum was the one who first suggested that Lily may have meningitis. But following a blood test which showed there were no signs of meningitis, we were sent home in the early hours and told she had a virus that could possibly be chickenpox.
That night I didn’t sleep. I just knew something was wrong. Then in the morning I went to see Lily and she was covered in spots. Within 20 minutes this erupted into an angry purple rash covering her from head to toe. I called my mum who screamed at me to phone an ambulance. They sent a fast response vehicle and did the glass test, and shortly after an actual ambulance arrived. They were very concerned and gave her a benzyl penicillin injection and rushed her straight to Barnet Hospital’s A&E. They’d called ahead with the emergency phone so the team were expecting us and within minutes she was on a bed and had eight doctors and nurses pumping her with all sorts of fluids and antibiotics with catheters and lines being placed all over her body.
We didn’t realise how serious it was, we just understood that Lily needed to be taken to Great Ormond Street Hospital (GOSH). Lily was so ill by this stage that in order to save her life they had to sedate her and put her on a ventilator while they waited for the CATS team to come and transfer her to the paediatric intensive care unit (PICU) at GOSH.
No matter how strong you think you are or what you have had to deal with in life, nobody can prepare you for the news that your baby girl might die right there on that table. Our world stood still as the room got louder and busier. We could see through our blurred vision that a doctor was frantically trying to stabilise our baby girl. We didn’t know how to react or what to do. Each minute felt like an hour but as each minute passed we held on to the thought that our baby girl was still alive, while trying to ignore the fact that at any second we could be told the worst news ever possibly imaginable.
Fortunately, Lily was successfully transferred to GOSH where she spent five days in PICU heavily sedated and attached to a machine which did her breathing for her. These were the longest five days of our lives and we lost all sense of reality. It was so traumatic; we didn’t expect this to ever happen.
As we waited for Lily to get stronger we were taken to a place called Guilford Street House. Guilford Street House is a ‘Home from Home’ run by The Sick Children’s Trust which supports families with seriously ill children in GOSH. Lily was very much in a critical condition, it really was touch and go for those first five days and even being a few minutes’ walk away from the ward made me feel anxious in case something changed. However, these feelings would have been intensified if we hadn’t had Guilford Street House and for that we are grateful. We are so grateful that we didn’t have to make a 50 minute journey to be with our daughter when she needed us.
When we finally heard our baby cry as she started to come round and breathe for herself it was the best feeling ever. As she grew stronger, we were able to be there for her and throughout this experience we weren’t just supported practically by The Sick Children’s Trust, but we were also supported emotionally by Guilford Street House Manager, Tina. We were comforted by Tina who was lovely and always around to help. We are so grateful to The Sick Children’s Trust for looking after us for ten days – it was such a relief to be so close to our daughter in this desperate time. We are so lucky we had a ‘Home from Home’; I don’t know how others do it.
There is no doubt in our minds how close Lily came to losing her life and we know that if we hadn’t been so cautious, Lily would not be here today. It is with special thanks to the knowledge, fast thinking and timing from the amazing ambulance team, Barnet A&E, CATS and GOSH that this story has a happy ending.
We are so happy to announce that apart from a few minor complications our beautiful baby girl Lily has bounced back from this horrible illness and is happy, well and smiling away like nothing has ever happened.
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