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Kasie's story

23rd October 2019

Twenty-eight-year-old Kasie, from Pen-y-ffordd in Flintshire, started feeling ill with a severe headache, dizziness, fatigue, nausea and sickness, stiffness and pain in neck and shoulders and light sensitivity

Kasie's story

A lumbar puncture confirmed viral meningitis but as a breastfeeding mum her treatment was not straightforward.

Thankfully though she’s now out of hospital and starting to recover, as she tells us here.

“I can't actually remember the first day I felt funny but I remember thinking how tired I felt and that I had a headache, which is weird for me as I never have headaches. It wasn't until the dizziness started though that I knew something wasn't right.

“I have a 14-month-old little boy, Lincoln, who is still breastfed and I remember laying on the sofa feeding him and the room was spinning like I'd had one too many drinks. I said to my husband Mark, "if I don't feel any better after the weekend then I'll get in at the doctors".

The symptoms just got worse and worse and by Sunday I could barely lift my head off my pillow in the morning. My headaches had got so bad I would be sick every time and the stiffness in my neck and shoulder made it so I couldn't move my head.

Call the out of hours GP

“I couldn't hold my son to feed him so I asked my husband to call the out of hours GP and got an appointment straight away. The GP said my symptoms sounded like meningitis but it was very unlikely to be that.

“They got me a bed in the rapid assessment unit and hooked me up to IV antibiotics that were breastfeeding-friendly. By this point it was late afternoon and my son was due a feed. Not thinking it would be a problem my dad, who was looking after my son, brought him to the hospital only to be told by the nurses that the baby wasn't allowed in because of the risk of infection.

“I could hear Lincoln crying for me in the other room and I wasn’t allowed to go to him. It was the worst experience of my life. My dad Phil took him home and I had to pump and dump my milk. One of the nurses rang around and got advice from a midwife, a breastfeeding specialist, a microbiologist and another doctor. Both the midwife and the breastfeeding specialist said I was okay to continue to feed my son as I was likely to pass on any antibodies my body produced to fight off the virus. Plus I'd been feeding him for days with symptoms already.

To breastfeed or not to breastfeed

“The microbiologist and the doctor both said they'd not come across it before and wouldn’t continue to feed just in case. I made an informed decision and decided to keep feeding my son.

“Breastfeeding limited the medication I was allowed. I had really bad sickness and they struggled to find an anti-sickness that I was allowed. Eventually they discovered I was able to have domperidone, which helped massively. The only painkiller I could take was paracetamol. It wasn't very effective as my headaches got so bad that all I could do was lie still. They eventually put it through my IV, which helped a little bit, and I could have ibuprofen in between.

“There were so many times I wished I wasn't breastfeeding and that I could take codeine for the pain but my son still really relied on my milk for comfort and seeing him and feeding him kept me going.

Found ways of coping

“After a week I found ways of coping with the pain. A cold press really helped when my headaches were severe, I wore sunglasses day and night because I was so sensitive to the light and I made sure to take my paracetamol and ibuprofen regularly.

“I had a lumbar puncture, which confirmed I had viral meningitis and I was allowed to go home.

“I've struggled so much looking after my son due to my symptoms, which are less but still very much there and debilitating. I'm lucky I have a very supportive family. I can't go in the car as the motion makes my dizziness and headaches worse and makes me sick. I'm getting better every day but I know it's going to take time.

“Being a breastfeeding mother made my treatment difficult but I'm glad I stuck to my guns when the doctors wanted me to stop. I want other mothers to know that you can continue to feed your baby with viral meningitis and there are medications you can have - the doctors just have to look and think a little bit deeper.

Website made me realise I wasn’t alone

“The Meningitis Now website made me realise I wasn't alone. Everyone thought because I'd been discharged from hospital I was fine but being able to show them other people's stories and how recovery can take time has helped them to understand.

“Right now I struggle to look after my son alone. If I do too much my symptoms become worse and I have to lie down in a pitch black room. This is impossible with a 14-month-old who doesn't understand mummy is ill.

“Mark is having to work so my mother Kathryn, who is disabled, is helping me with Lincoln. So far it’s not been easy but I'm hoping every day I will improve and eventually get back to normal. Hopefully my recovery will be quick.”