Lily defies all odds to take her first steps
Mum Alice and Dad Dan from Evesham, welcomed their daughter Lily into the world in December 2020, during the COVID-19 pandemic. Only 24 hours after birth, Lily was diagnosed with Sturge Weber Syndrome, a rare neurological disorder usually involving a port wine stain birthmark.
Lily was born at Worcestershire Royal Hospital and appeared healthy, but at 18 hours old, Lily started coughing yellow mucus.
Alice said: “I had a textbook pregnancy with Lily. The only thing that was coming up on scans was that the size of Lily’s head appeared small. We were expecting a small but healthy baby.
“Shortly after the coughing started, Lily stopped breathing. We were so lucky that the doctor arrived at our bedside just a moment before and could act immediately.”
Lily was rushed to the Neonatal Intensive Care Unit (NICU), where doctors managed to stabilise her. Hours later, Lily had an MRI and EEG scan, which looks at the connections in her brain. After consulting with the Neurology Department at Birmingham Children’s Hospital, Lily was diagnosed with Sturge Weber Syndrome.
The rare disorder is usually characterised by a port wine stain birthmark which covers the forehead or eyelid. The birthmark is a layer of extra blood vessels that covers a part of Lily’s brain and it also affects the eye.
Lily was eventually discharged at ten days old, and Alice and Dan were given a breathing alarm to monitor Lily when she was sleeping.
Alice added: “We knew then that Lily’s head was small on scans because of the abnormalities in her brain caused by the extra blood vessels. It was frightening, and it was really hard for her big sister Chloe, who was four at the time, and couldn’t understand why her sister wasn’t home.
“Dan and I were so worried about Lily. We were too scared even to close our eyes to sleep, so one of us was always awake with her. We hardly slept for weeks.
“However, in time, we grew more confident. Lily’s diagnosis was actually a blessing during a dark time. She was seen quickly by the right people.”
Lily is cared for by multiple teams at our Children’s Hospital, who treat her regularly with laser treatment to keep her birthmark healthy and with physio to help her to build strength. At ten days old, she was seen by its specialist Eye Department, as the port wine stain had caused Lily to have Glaucoma in her left eye.
Mr Joe Abbott, Paediatric Glaucoma Surgeon, performed procedures to remove a build-up of fluid in Lily’s eye.
Mr Abbott said: “Lily’s surgery went well. We lowered the pressure in her eye. This allowed the surface layer of her eye to clear and take the pressure off her optic nerve to allow her to develop better vision.”
Due to the extra blood vessels causing abnormalities in her brain, Lily also suffers from epileptic-like seizures and muscle weakness on the right side of her body.
Alice said: “As time went on, we learnt a lot about her condition and grew in confidence, but in May 2021, she had a reaction to sedation in a routine appointment and had a seizure. It completely knocked our confidence.”
However, Lily, now nearly 3 years-old, has medication to control her seizures and has since been seizure-free and overcome many milestones. 
Alice explained: “After Lily was born, we were told she might never be able to walk, however, a few weeks ago, she took her first steps. To see her walking was the most amazing feeling. She has overcome so much at such a young age.
“Despite everything that’s happened to her, Lily is a happy, smiley little girl who loves playing with her big sister. She’s continuing to defy all expectations.
“We can’t thank the teams across both hospitals enough. We haven’t had one negative experience. The care Lily received was so fast and efficient despite the immense pressure the staff were facing during COVID-19. We are so grateful to everyone.”
Being in hospital with a rare illness can be a lonely time for our patients and families, and Alice explained how she found comfort from social media.
After letting up an Instagram account for Lily, she met other families who had experienced Sturge Weber Syndrome and facial birthmarks.
Alice said: “We surrounded ourselves with people who knew what we were going through and it was a massive help. We didn’t feel as alone.
“One Mum, Beth, whose daughter Daisy also has laser treatment for a port wine stain at the Children’s, reached out and we became fast friends. We could support each other through our similar experiences, and now Lily has a new best friend in Daisy.”