Isobel’s story has been written by her mum, Hollie.
Isobel was born in January 2023 at just 25 weeks gestation: a tiny warrior entering the world far earlier than expected. She spent 16 weeks in the NICU across three hospitals: a whirlwind of machines, monitors, and miracles. What I thought would be the greatest battle of her life – and the hardest mental challenge of mine – turned out to be just the beginning of her extraordinary journey.
In NICU, Isobel faced mountains most adults never climb. She struggled to come off the ventilator and had repeated oxygen desaturations during feeds. Eventually, she was placed on continuous feeding directly into her jejunum: bypassing her stomach to ensure she could safely receive nutrition. She endured multiple rounds of steroids, blood transfusions, MRIs, heart scans, and brain scans – each one a reminder of her fight to survive.
When she was finally discharged, she came home tube-free but required 24/7 oxygen support on the lowest setting. The community team wanted her settled before beginning the weaning process – a cautious step toward independence.
Settling at home wasn’t easy. After weeks of trial and error, her medical team diagnosed her with CMPA (cow’s milk protein allergy). She was switched to specialist formula alongside breast milk and slowly began to thrive. The first two months at home were beautiful: she was happy, developing well for her corrected age, and her doctors had no concerns.
But at the end of July, everything changed. Isobel became increasingly unsettled. Her respiratory consultant increased her omeprazole dose, and on August 3rd, we witnessed her first visible spasm. I took her to the GP, who admitted he had little experience with babies so small and prescribed Gaviscon. It wreaked havoc on her digestion and left her miserable.
Then her skills began to vanish – she stopped rolling, smiling, and using her arms. I voiced my concerns to a community nurse, who swiftly arranged an appointment at our local hospital. But the doctor dismissed my worries, attributing her regression to reflux. “It’s most likely not seizures,” they said. That sentence still haunts me. At the time, I trusted the system – we had only known attentive, compassionate care during her NICU stay. Current me would probe and demand the best for my baby girl, and I unfortunately live with the regret of not pushing this further, as every day counts with infantile spasms.
Isobel continued to regress. She stopped making eye contact, stopped tracking objects, and became eerily still – like a doll. I broke the NICU rule and turned to Google. Within five minutes, I found a video of infantile spasms and knew instantly: this was it.
I called our local children’s hospital, where Isobel had open access. They were dismissive – one person even asked, “What do you want us to do about it?” Desperate, I found a Facebook group run by UKIST. I posted a video of Isobel, and within minutes, parents responded: “That’s exactly how our child presented and the movements are suspicious. Get to A&E.” They coached me on what to say and how to quote NICE guidelines. I didn’t sleep that night, rehearsing every word.
The next morning, I packed a bag and went to the hospital, refusing to leave until an EEG was done. Our local EEG department was closed, so we were sent to a larger centre. Less than 24 hours after discovering the condition, Isobel was diagnosed and started on medication.
It took several adjustments, but we finally saw a reduction in spasms and were discharged after 10 days. However, when her steroids were tapered, the seizures returned. We leaned heavily on the support of other families and were back in hospital within a week. Another medication was added, but her spasms worsened – and we were discharged again.
A member of our community team was shocked by the frequency of her seizures and got us readmitted. More medications were tried, but nothing brought seizure control. Eventually, we were transferred to a specialist hospital, where Isobel was started on emergency ketogenic therapy.
She relapsed again. A new medication was added, but it caused a severe reaction – she lost head control and the ability to swallow. In March 2024, another drug was introduced. And then, after eight long months without a smile: she smiled. It was the most magical moment of our lives.
We had a few months of seizure control before she developed photosensitive epilepsy. She began sleeping 23 hours a day. More medications were trialled and failed. Finally, the decision was made to try medical cannabis.
Within days, her seizures reduced. Since starting it, she’s learned to crawl, pull to stand, babble, and even play with toys.
No known cause has ever been found for Isobel’s infantile spasms. Her medical team remains baffled by the severity of her seizures and her extreme reactions to treatment.
Despite everything, Isobel is the most loving, joyful little girl. Her strength and resilience inspire me every single day. I couldn’t be prouder of the fight she’s fought – and continues to fight – with grace, courage, and a smile that lights up the world.
It’s the most difficult journey you can endure – it’s soul-crushing, and there are moments where you feel deflated, defeated, and hopeless. But keep fighting: the battle is worth it. We endured months and years of setbacks, hospital stays, and heartbreak, but we’re finally starting to see glimpses of a happy and healthy life for our little girl. And we don’t regret a second of it. All the heartache, all the pain, all the sadness: it was worth it to see how beautifully our little girl has developed – and will hopefully continue to develop.
