In 2017, and in her late thirties, Carly Hearn from Southampton was a gent’s hairdresser and salon manager with 21 years experience. In her spare time she loved singing and was fronting a rock band that gigged locally. She enjoyed exercising and going to the gym.  

Six years on Carly says that she is mostly housebound. 

In April 2017 Carly Hearn was expecting her first child. With her daughter in a breech position, Carly had opted for an elective caesarean section. The surgery largely went to plan although staff initially struggled to administer an epidural for pain relief, leaving Carly in tears after 45 minutes and several failed attempts. 

Carly and her daughter were discharged from hospital following the birth. However, 36 hours later at home Carly developed an infection. Her symptoms started with uncontrollable shivering, weakness, pain and what she describes as feeling like she was ‘on fire.’ The emergency services were called, with a first responder arriving after two to three hours and an ambulance some two hours after that. ‘I used up most of his gas for pain relief whilst drifting in and out of consciousness,’ says Carly 

She was re-admitted and after three days and various intravenous antibiotics the infection seemed to be under control. Carly was sent home with a prescription for oral antibiotics.  

36 hours later though and still feeling extremely unwell, events took a dramatic turn for the worse when Carly’s caesarean scar burst. ‘Infected fluid was running out like a tap,’ she says. Carly was admitted to hospital for a third time and three day later underwent surgery on her stomach to remove necrotic tissue. ‘I felt like I was going to die and I got even worse that evening so I was pumped with more fluids and stronger antibiotics.’  Six more days of intravenous antibiotics followed, along with pain relief including Oramorph and codeine and fluids. Throughout this period, she was still being treated in a maternity hospital, with her baby at her side needing constant care as the hospital was so understaffed.  

Carly was eventually sent home with oral antibiotics and pain relief and received a pharmacy delivery of wound packing packs and pump dressings to be used at home. It transpired that she had had post-natal sepsis – something of which she had not been aware in hospital. It was five months later that she received the news from a doctor in person. Carly describes an initial feeling of shock, ‘but when I read more about sepsis at home things made more sense. My husband and the rest of the family were equally shocked – I think that they also realised how nearly I could have died.’  

After leaving the Princess Anne maternity hospital in Southampton, Carly was seen at the Adelaide medical centre nearby twice a week for wound care. Her wound was cleaned, repacked and sealed with a vacuum pump in order to allow it to heal from the inside out, thereby reducing the chances of sepsis striking again. It took five months to fully heal, however. ‘It was really hard to care for my daughter,’ she says.  ‘I literally had to sleep when she slept and could just about make up her bottles and change her nappies.  My husband had to do everything else, even with going back to work.’ 

After 15 months the situation became untenable and Carly’s husband of 18 years Richard had to stop working. When daughter Freja became more mobile, Carly felt unable to cope with the fatigue and pain. She describes episodes of paralysis lasting for hours on end. ‘I felt like a failure, she says, ‘Reading more about Post Sepsis Syndrome, I realised why I probably still felt so ill months later. 

I have never recovered from the fatigue and I still have bad nerve pain in my back and legs. Exactly a year later I was diagnosed with myalgic encephalomyelitis and fibromyalgia by a rheumatologist. Over the last five years I’ve also been diagnosed with lichen sclerosus, hyperhidrosis and mast cell activation syndrome. My GP handles my treatment and I only return to specialists if symptoms get really out of control.’ 

Carly has been unable to work since having sepsis She relies on crutches indoors when needed and uses a wheelchair or mobility scooter when out and about. She had initially hoped to make a full recovery, to return to work and for everything to go back to normal. She says that she now knows that she will continue to experience the same conditions for life though. ‘Some days are better than others,’ she says. 

She describes her husband of 23 years, Richard, as having been fantastic throughout her ordeal and says that she was also lucky to get an ‘amazing’ occupational therapist who helped her with aids and adaptions at home. Her regret is that there is not more help available on the NHS for ambulatory wheelchair users.  

Carly continues, ‘I try to do the best I can and take it day by day and hope that symptoms are managed the best they can be. 18 months ago I discovered a talent for making jewellery with micro macrame and I have other hobbies including Netflix and audio books – one of my favourite subjects is anthropology. I am self- taught at making dreadlocks and I care for my own.  

It’s really hard to look into the future when you don’t know how you’ll feel when you wake up the next day. I really hope for more money to be invested in research for better understanding and better medicine. And I am really keen to raise awareness of sepsis and all the different situations it can happen in.  

And her final message to others? ‘Rest, and absolutely don’t push yourself to do more than you can. Accept all the help you are offered and don’t feel bad about it.’