Amelia came into the world with a stormy arrival weighing just 4lbs and with the umbilical cord wrapped around her neck five times. Amelia was delivered by an emergency c-section at 37 weeks after a low heart rate monitored during my routine appointment, I was then blue lighted to a different hospital where Amelia had to be resuscitated five times. She spent a week on a ventilator as she struggled to breathe independently and overcame lots of complications as all her vital organs were severely damaged.
After fighting for a whole three weeks and finally being able to feed through a bottle, her nasal tube came out and she was allowed home. But despite my efforts to keep Amelia well and safe, she spent the majority of her early life in hospital fighting various infections due to her weak immune system. Her MRI scan showed significant damage to her right occipital lobe due to her hypoxic ischaemic encephalopathy at birth.
At 12 months we were hit with the devastating news that Amelia had quadriplegic cerebral palsy and global development delay. Amelia was not meeting any of her milestones despite all the physical therapy she was receiving and hydrotherapy.
Due to her CP Amelia suffered from severe reflux and she became very weak. Just before her second birthday she had a gastric tube fitted and was then tube fed. However, her severe vomiting continued and consequently she underwent another five hour surgical procedure a year later where the top of her stomach was tightened to prevent her physically being sick. This caused her immense agony as her reflux was still present but she was retching all the time and couldn’t eat orally anymore.
Due to spasticity in all four limbs, Amelia can’t independently move around. She relies on an adult for all her care needs and movement 24 hours a day.
Amelia has undergone many private therapies including advanced biomechanical rehabilitation (ABR), Anat Baniel Method (AbM), movement centre, brain wave to a name a few. Over time her muscles are becoming weaker and her spasticity stronger making her movements even more difficult and causing her agonising spasms.
It also led to Amelia having hip dislocation at the age of 8 which required a very invasive surgery and tendon lengthening. Due to her spasticity, deformities in her body will escalate as she continues to grow.
Amelia also had sepsis at the age of 6 and became very poorly which led to her having a jej tube as she couldn’t tolerate any of her feeds.
After a year of struggling Amelia was diagnosed with progressive intestinal failure whereby she struggles to absorb her nutrients and other gastric related issues.
Amelia's struggles continue but her smile and positive attitude beats everything that her complex health issues throw at her! She really is an inspiration!