Mum Natalie says,
“On the night of the 5th January 2023 we took our five week old baby Quinn to A&E, she had a really high temperature, was breathing different and struggled to settle to sleep. She was checked over, her temperature had dropped and she had fallen asleep so we were sent home with an open invite to go back if we felt things had changed. We felt so relieved that she was ok and were happy to get her back home after waiting for hours in A&E.
Over the next few days she was sleeping a bit better, eating fine and she looked well so we thought maybe she had a bug and was getting over it. But on the 9th Jan her breathing seemed heavy, she was struggling to settle again, screaming a lot and she wasn’t feeding as well. We called the hospital and they said we “could bring her in if we wanted to”, this made me feel like I was overreacting and that I was probably wasting their time, but I was worried so we went in.
On her initial assessment the doctor noticed her breathing and said she was concerned. They decided to give her antibiotic injections while they attempted to put in a cannula. At this point the worst case scenario was sepsis, two weeks on IV antibiotics. I was devastated, the thought of spending two weeks in hospital with my baby while my nearly two year old was at home seemed awful. If only I knew what was coming.
Quinn deteriorated very quickly the following day and we ended up being rushed to Great Ormond Street Hospital (GOSH) by the PaNDR (Paediatric and Neonatal Decision Support and Retrieval Service) team. The infection went straight to her heart, causing infective endocarditis. She had a vegetation on one of her heart valves which meant blood was coming back into her heart rather than being pumped round her body. She also had a blocked artery. These issues caused part of her heart to suffer badly, there was no blood supply and it was getting weaker. After a couple of days we found out that the infection that started all this was group B Strep.
When we found out group B Strep was what caused all this we were so confused, firstly we hadn’t heard of it, secondly, Quinn was five weeks old, where could she have picked up this infection? After doing some research and reading a lot on the Group B Strep Support website, we learnt about late-onset GBS infection. The thought that it could have been me that gave this to her and put her in all this pain was heartbreaking, still is heartbreaking. The doctors in GOSH come from all over the world, we had doctors from Egypt, USA, Spain (just to name a few), who couldn’t believe we don’t test during pregnancy.
While we were at GOSH Quinn was on a lot of medication, she was never allowed to wake up, stable, but she never got better. The risks of something sudden and severe happening were increasing. It was time for her to be at peace. 11th February 2023.
We will never know 100% where she got the infection, nor will we ever be sure if she had issues with her heart from birth, all we know is that our girl is not here with us. We just have to live with the what ifs, what if I’d have known more about this infection, the signs and symptoms, if the hospital had done further investigations when we first went in, could things be different?
I want to raise awareness so there are fewer parents living with these questions for the rest of their lives. We have solely relied on the Group B Strep Support website for everything we now know about the infection. The information has been invaluable and has helped us to understand what happened to our baby girl and what the future may hold for us if we were to try and have another baby.”
