Our March warrior Chloe – beating the odds.

Chloe was born unexpectedly at 28 weeks 5 days weighing a little over 3lb and spent the first 170 days of her life in hospital. She battled sepsis and meningitis in her first week and then the doctors discovered a bronchogenic cyst compressing her airway. At just under 3 weeks old she had her first life saving surgery which had to be repeated not even 3 weeks later. At 8 weeks old when she still wasn’t even classed as term she reached the weight limit for the big operation. She had open surgery to remove the cyst and repair the hole in her heart in an 8 hour long procedure with cardiopulmonary bypass. Shortly before her official due date the doctors had concerns about her brain so carried out an MRI scan where they saw her brain had sustained severe damage, we were told to prepare for the worst and that Chloe’s comfort was the only priority now.

Thankfully Chloe had other plans and she remained stable and grew stronger, eventually coming home in March 2020 with a Cpap machine, an nasogastric tube and a feeding pump, not that any of that mattered as she was finally home.

Six weeks later when she was 7 months old Chloe was admitted to hospital because of continuous vomiting and it was while there that I first saw these strange movements. I told a nurse and a doctor but whenever anyone came to see her she was completely fine so I tried to tell myself it was nothing concerning. Then a few days later the movements were accompanied by crying and screaming and Chloe being in complete distress until she would fall asleep, only to wake up and continue the cycle. It became unmanageable and I called the community nurse in tears but no matter what specialist we spoke to no one wanted to take responsibility for what might be wrong and each one trying to blame it on something else. At this point the palliative care nurse stepped in and took over, she organised a stay at the children’s hospice Rachel House for a full assessment and on our second day there the doctor saw the movements I had seen previously. He recorded them on his phone and immediately contacted the neuro department at the childrens’ hospital- we had an EEG booked just days later for when we left the hospice and Chloe was diagnosed with Infantile Spasms that same day. She was started on nitrazepam and sent home with another EEG booked for a week later. Nitrazepam isn’t usually the frontline medication for IS but it was life changing for us, the following day Chloe smiled, laughed, babbled and didn’t cry once, more importantly the spasms had drastically reduced, a couple of minor adjustments later and they had stopped completely.

Once everything had settled and I got my happy baby back I quickly realised the seriousness of IS and just how bad things had got for her – I worked out that Chloe’s IS had gone undiagnosed for at least two months so I was devastated as to what more damage had potentially been done to her brain. Her tone had drastically reduced and she became so floppy, she was unable to hold her head, she stopped fixing and following with her eyes and was no longer tracking objects and although she was already tube fed she developed dysphagia and lost all the ability she previously had to swallow. It felt like we were starting again with a newborn despite her being almost a year old.

She went almost a year seizure free but the seizures returned in summer 2021 presenting as focal seizures and epileptic spasms so she was started on topiramate with the aim of weaning down the nitrazepam.