Chloe’s story has been written by her mum, Mechelle
Chloe was born not breathing in 2019 at just 28 weeks and five days gestation. In her first few days she battled both sepsis and meningitis. During a routine X-ray they realised she had a cyst on her airway which meant one of her lungs was over inflated while the other remained smaller than it should. It was an unusual situation, and no one knew quite what to do but at just over two weeks old she had lifesaving laser surgery on the cyst as she was deteriorating fast. Doctors hoped it would buy her more time so she could grow and have the bigger more definitive surgery but three weeks later they had to repeat this operation- once again saving her life. Two weeks after this, Chloe finally gained enough weight to meet the minimum 5lb criteria for heart bypass and underwent open surgery to remove as much of the cyst as they could.
After this operation we thought we were over the worst, but recovery was slow and during some investigations as to why, they had concerns for her brain development so carried out an MRI scan to have a look. The results were the worst news possible, and the doctors told us her brain had been severely damaged with everything her little body had endured in her first 11 weeks of life. At this point all they could do was keep her comfortable and they fully expected her to pass away and requested we put end of life plans in place.
Thankfully, Chloe had other ideas and remained strong, finally coming home in March 2020 after 6 months in hospital. However, things didn’t get better and whilst in hospital for feeding tube issues I noticed that she was doing some strange movements. These were almost always accompanied by moments of extreme distress, so I didn’t get any videos and doctors never witnessed them, so we were sent home with no answers. Two months later Chloe had her first visit to the children’s hospice for respite and on our very first afternoon the doctor there witnessed the movements first hand. He recorded them and called the neurologist at the hospital who booked us in for an EEG just days later. After just 30 minutes of the EEG the consultant came into the room and explained that Chloe had infantile spasms- something I had never heard of before. I had no idea the severity of these until I went home and googled which was one of the worst moments of my life.
She started on nitrazepam as a first line medication and the results were almost instant. No more distress or tears and we saw our beautiful girl smile and giggle for the first time ever. Spasms fully stopped after one increase of medication and we saw no seizure activity until a year later. By this time they were classed as epileptic spasms and topiramate was added into her regime which again worked very quickly for her. Chloe has been seizure free ever since which has been five years now and is amazing but due to everything that happened after birth and then the delay in treating IS, Chloe is now a severely disabled and complex little girl. She is the happiest, bravest, most resilient and cheekiest of souls though, her smile brightens up my every day and she’s come on leaps and bounds since starting school in 2024. She just celebrated her 7th birthday and I couldn’t be prouder of her.
