When a few chicken pox spots appeared, we naively thought our daughter, Penelope, may only have it very mildly. Little did we know that over the coming months, our lives would be turned upside down, all because of a “mild” childhood illness.
Penelope had always been a robust, healthy child, rarely ill, so when she came down with chicken pox at 22 months old, we weren’t too concerned. We kept an eye on her temperature, bought all the usual remedies, and dosed her with Calpol when she needed it.
However, as some of her spots started to scab over, she seemed to be getting worse, rather than better. She was complaining of a pain in her right knee, which became so bad that she couldn’t walk or bear weight on it. As well as running a temperature up to a high 39, she also became listless and stopped eating or drinking.
We became increasingly concerned because we felt this wasn’t normal for this illness, but after contact with several doctors, they told us it was probably just chicken pox and to come back if she didn’t improve. A few days later, we took her back to a different doctor and they made a referral to the paediatric unit at Gloucester Royal Hospital.
Even as we set off in the car, having popped home to pack a bag as we were warned they may keep us in, we were not too concerned. We were reassured that we were going to be seen and thinking that we would be home again soon.
Looking back over the 36 hours that followed, they simultaneously seem to have been the longest of our lives and also to have passed in no time. We saw doctor after doctor, consultant after consultant, and as we got introduced to increasingly more senior members of staff, we started to realise that Penelope was seriously ill.
We didn’t yet know that she had sepsis. Her immune system weakened by the chicken pox, Penelope had developed an overwhelming response to a secondary bacterial infection. She was on IV fluids and broad spectrum antibiotics, as well as strong painkillers, and then the orthopaedic consultants started to mention sepsis, something we didn’t know anything about, although Google threw up some terrifying statistics.
After a long, lonely night where I stayed up until 5am watching over her, they started to talk about transferring us to Bristol Children’s Hospital for more specialist care. What I still struggle to think about now, is when I asked the senior registrar if Penelope was going to be okay and she couldn’t or wouldn’t give me a straight answer. The implications of that were terrifying and took my breath away.
We were eventually transferred to Bristol, and soon after arriving, we met the orthopaedic consultant who was to become a familiar face over the coming weeks. When he told me, “she’s very ill but not dangerously so,” a little bit of the weight was lifted off my shoulders. He requested an ultrasound, which didn’t show any infection in her leg joint, so we were taken to a high dependency room on the medical ward.
By this point, Penelope was very swollen from the fluid which they said was leaking from her blood vessels, as well as in a lot of pain from her leg. She also had swelling in her left arm which they suspected might have been the site of another infection. Following another long night, where we stayed up and watched over her, she was given a general anaesthetic and taken for an MRI scan. We were asked to give permission before the scan for her to have surgery if it was needed, and the scan did show pockets of infection on her hip and her left arm. They operated on her and at that point, the enormity of what was happening didn’t really sink in. We were just focused on getting her better and happy for them to do whatever it took.
She already seemed more comfortable when she came round from the surgery, but continued to complain about pain in her leg and we had also noticed some swelling and tightness in her shoulder. Over the next three weeks, she had to have three more lots of surgery and two blood transfusions.
We got through each hour, each day, by focusing on the small victories, such as the removal of the catheter, her talking, asking for food and drink, smiling, and eventually laughing. We were seeing our daughter slowly coming back to us.
The final MRI showed that her hip had been pushed out of its socket by the infection, so they put her into a hip spica cast, which ran from above her waist, all the way down one leg and half way down the other.
After six weeks of IV antibiotics, we were finally allowed to go home, with a further six week supply of oral antibiotics and our daughter in a cast. Being at home was wonderful, although initially rather terrifying, after being removed from the safe bubble of the hospital.
Penelope didn’t let the cast get in her way at home, crawling at a fair pace, and even standing up and trying to walk in it.
Eventually, the day came to have the cast off. Again, we were naïve and expected that it would come off and she would get up and walk. But the reality was that she was in a lot of pain because her leg had been held in the same position for so long.
We hadn’t really thought about the future beyond that day, and weren’t really prepared when the consultant told us there was damage to her femur and hip joint. The bottom fell out of our world all over again when he told us it may mean a hip replacement at 12 years old, at 40 years old, it may heal itself, or any range of things in between.
It has been a long journey, both for Penelope and for us. As parents, it has been terrifying, emotionally draining, physically exhausting, and, as she got better, very intensive caring for a child whose life has changed in this way and was suddenly no longer able to do the things she used to be able to.
We don’t yet know what will happen in the future. She goes back regularly for check-ups and it’s now a case of wait and see. We try to focus on the positives and, most of the time, we succeed. We also try to be kind to ourselves after the long journey we’ve been on which has changed us all. Whatever happens, Penelope being Penelope, she won’t let it get in her way.
Morwenna Tudor (MUM)