‘Sepsis has had a massive impact on my life, my mental health and my personality.’  

A nurse of 18 years, Colleen W was looking forward to the birth of her second child in 2016. However, the events of the subsequent four weeks caused emotional scars that still trouble her nine years on.  

In 2016 I was pregnant with my second child. The pregnancy went well, apart from the fact that I was told that I had group B strep. I also had hyperemesis for the majority of my pregnancy. 

The day before my daughter was born I had a sweep. The following day, I hadn’t felt her move for quite a few hours so I went to the Royal Victoria Hospital (RVH) maternity unit in Belfast. I was examined and I was 4 cm dilated. They did an ultrasound and my daughter appeared to be doing well, but I wasn’t feeling great. My first pregnancy had progressed rapidly and my son was born less than 3 hours after my first contraction. 

In my antenatal appointments I was told I would need to commence IV antibiotics as soon as I was in labour due to the type of group B strep I had, and that, due to my very fast first delivery, I would need to come to the hospital straight away. I explained this to the doctor at RVH maternity but she sent me home. My baby daughter still wasn’t moving much and I had pains and flu-like symptoms. 

About an hour after I got home, I felt like I was freezing cold and I started to vomit – I felt really unwell. My husband checked my temperature and it was 43 degrees, so he immediately brought me back to the hospital and checked me in at reception. I remained in reception for 45 minutes before anyone came to see me until I was finally brought in and seen by the same doctor as I had that afternoon. There wasn’t much explanation – she put a cannula in my arm, put up a bag of antibiotics and the next thing I knew I was being wheeled into the lift. I was then wheeled into a room where there were four or five staff waiting for me and was told they believed I had sepsis. They followed the sepsis 6 protocol (I know this because I am a nurse). I knew I was having symptoms of delirium though and that my baby was in distress and needed to be delivered immediately. I was asked to sign forms for an emergency c-section, at which point my waters broke and my daughter was born very soon after.  

I only have a few memories of that night. There was a huge mix of emotions – I was afraid that I would die, leaving my 3-year-old son without a mummy, or that my baby might not survive delivery. I was perturbed because I felt that I had been dismissed very quickly earlier in the day when I expressed my concerns, and I was thankful that we were both ok.  

We spent three days in the RVH maternity ward – both of us on IV antibiotics. 

I’ve never really felt right since then. I have a lot of “brain fog”, trouble sleeping and joint and muscle pains that I’d never had before.  

 I wish that my story of sepsis ended there but unfortunately, four weeks after my daughter was born, sepsis struck our family again. 

I was changing my daughter’s nappy when I noticed blood in her bowel motion. This happened twice more, at which point I rang the out-of-hours GP, who advised me to take her straight to RBHSC (Royal Belfast Hospital for Sick Children) which we did immediately. Once we were there, the SHO (senior house officer) came in and examined her, and her last nappy which had blood in it. My daughter was quite bright and alert but her tummy was distended. The SHO went and got the registrar who looked at her but did not examine her and did not check her nappy. He said that as my son has a milk allergy my daughter probably had the same, and gave us a prescription to drive to Ballymena to get specialised milk – a 40 minute drive away. I have never understood why the hospital couldn’t have provided me with a tub from the milk kitchen until I could get some the next day. 

My daughter became extremely unsettled on the car journey to get the milk. I had to stop several times and she would only settle when held. Eventually she was unsettled and crying all the time, even when held, and this lasted for hours. I hoped the new milk would help and eventually we went to bed. My daughter was still unsettled so I held her in bed and then she suddenly stopped crying. I turned on the bedside light and could see that she was extremely pale. When I checked her temperature she was hypothermic. I told my husband that he needed to drive her straight to the hospital and that I would follow once I had found someone to look after our son.  

I had no idea how ill she had become. When I arrived at the hospital my daughter was in the resus room getting an IO line as her veins had shut down. Her tummy had ballooned. We were called into the “room of doom”, as I call it, and the doctor said they believed she had a disease called necrotising enterocolitis or NEC and asked us not to Google it. They said she was extremely unwell and had developed sepsis as a result and that she was therefore being admitted. 

My daughter was transferred to the PICU (paediatric intensive care unit) where she stayed – ventilated – for one month. She ended up having 30 cm of her bowel removed and had a stoma, which has since been reversed, and underwent countless invasive procedures over the almost four months she spent in hospital. Once again, I felt I had done the right thing going to the hospital when I sensed something was off, and I wish that more thorough checks had been carried out when we first presented.  

I have suffered with mental health problems since all of this happened, and I have carried a lot of guilt over the past eight years that I wasn’t firmer with the medical teams at the maternity and children’s A&E, as I instinctively knew on both occasions that something wasn’t right. I was eventually diagnosed with PTSD in 2022. For a while I only had a few memories of everything that had happened, but at night I would close my eyes and it all came back very vividly.  

Sepsis has had a massive impact on my life, my mental health and my personality. I was once very carefree and happy and now I am afraid of everything. I am permanently exhausted from lack of sleep – trying to continue to work full time, run a house and keep my friendships. I feel that since I got sick, and then my daughter did, I have never fully recovered. 

Charity comment: 

One of the first research studies to which this charity provided seed corn funding in 2018 was the GenOMICC project at the University of Edinburgh. It is now a world- leading investigation into the causes, diagnosis and treatment of sepsis. The study is heavily focused on the genetics of sepsis and other critical illnesses, and on the likelihood that certain individuals may be more genetically susceptible than others. Cases such as those of Colleen and her daughter would suggest a level of genetic connection. 

 
Colleen’s experience of sepsis, followed so closely by that of her daughter, was clearly deeply traumatic. She raises very clearly and rightly, however, the point that parents should always trust their own instincts. It is vital not to be afraid to re-present to clinicians – as Colleen did – if you or your child have been seen already and sent home and you remain at all concerned about persistent or deteriorating symptoms. You can read more about sepsis in children here. 

We are very grateful to Colleen for sharing her family’s story so honestly with Sepsis Research FEAT in order to raise awareness.