She was just a baby when she was struck down by sepsis. 3 years on, though she was lucky to survive, she is still affected.
This account is written by Tilly’s Mum:
“In April 2009, all 4 girls caught chicken pox consecutively. They were aged 4 yrs, 2yrs and the twins were 7 months. Each girl got it worse than the one before and Tilly was the last to catch it. Her sister, Lucy, had developed a secondary infection in one of her spots and been prescribed antibiotics, so I was not too alarmed when Tilly also got a spot on her chest that looked quite angry.
Typically, it was a bank holiday weekend, and that night Tilly was very unsettled and would not feed. She was crying constantly and had a high temperature. We took her to an out-of-hours doctor, who prescribed antibiotics and sent us home. The doctor did not even take Tilly out of the buggy to examine her. Ironically, the out-of-hours clinic was actually within the hospital and it would have been very easy for her to get Tilly seen by a paediatrician. By this time, the redness was streaking up in a line from her spot which looked highly suspicious to me… the doctor really didn’t take any time to assess her. (Infections of the skin and soft tissues like this cause between 7 and 10% of cases of sepsis).
By the time I got her home, she had become limp and unresponsive, so we rushed her back to the local hospital Emergency Department. She was immediately admitted and given IV antibiotics and fluids. After 24 hours, she had stopped urinating completely despite having received 2000ml of fluid. She was completely swollen and it was difficult to get any lines in her. She had gone from weighing 7kg to 9kg in 24 hours! A non-blanching rash appeared, and it was at this point I started to really panic. (Swelling, known as oedema, is a very common sign as sepsis develops. It forms as fluid leaks from the blood vessels into the tissues. Non-blanching rashes like this are typical of meningococcal disease, but also occur in other forms of sepsis like in Tilly’s case).
I insisted they got a consultant in (it was 2:00 am on Easter Monday and we had lost all faith in the Registrar- we just wanted the best for our daughter!). As soon as the Consultant arrived it was decided that Tilly needed to be transferred to a specialist centre. While waiting for the retrieval team from the regional PICU (Paediatric Intensive Care Unit), she was put on inotropic support (drugs to support her low blood pressure) on the children’s ward. At 5:00 am, the PICU team arrived and I have never been so relieved to see such an army of doctors and nurses in all my time! She was intubated (a tube was placed into her windpipe to support her breathing), a central line (a catheter placed in a large vein in the neck to monitor and give drugs) was put in and she was whisked away. We live 70 miles from the PICU so it was a tough journey, and we also had to arrange what to do with the other 3 girls!!
(Tilly’s Mum’s insistence on the attendance of a senior doctor probably saved her life).
However terrifying it was to see her in PICU, it was also a huge relief knowing she was in the best hands. They grew Strep A (a form of Streptococcus) from the pus that they drained from her chest wall and she was put on the appropriate antibiotics. She also had frusemide (a diuretic- ‘water medicine’) and started weeing for Britain! She developed pneumonia from being on the ventilator but after 5 days it looked like she would be extubated (her breathing tube removed). Unfortunately, she then had a significant seizure that lasted 20 minutes. The whole nightmare was to continue as they did CT scans, MRI scans, lumbar punctures etc to see if they could find a cause. Everything came back clear, apart from an absent left cortical vein which was not thought to be significant. To this day, we still don’t know what caused the fit. After 7 days she was extubated and then we returned to our local hospital for a further 8 days of antibiotics and to wean her off the morphine. I was amazed at how quickly she bounced back and I realise how very lucky we were for her to have survived without any major issues.
It was from this point that her development seemed to be delayed, and looking back at what she went through it is hardly surprising.
Although her development is within the normal limits, she is a long way behind her identical twin Lucy. Cognitively, she has struggled with even the most basic concepts (colours, counting etc) but she gets there eventually so I am not overly concerned. I would say she tends to do things/ get concepts about 6 months later than Lucy. Her speech is still fairly basic, whereas Lucy is talking in quite complicated sentence structures with a good vocabulary. She walked 4 months later than Lucy, but the physical milestones now seem less significant as they are now on a par in that respect. They are due to start school in September, and I suppose it is the first time I have really had to evaluate the impact of Tilly’s illness.”