JOURNEY AS TOLD BY MOTHER AMANDA
Addison was born six weeks prematurely and spent a week in the Neonatal Intensive Care Unit at Nepean Hospital, Penrith. She had to have CPAP Oxygen for the first two days of her life and spent the next five days in a humidicrib. We thoroughly enjoyed finally holding her in our arms after this worrying first week was over. She also got to meet her big sister, Grace aged three years old too.
At 12 weeks old, Addison spent a week in hospital fighting a mysterious illness which made her breathing very difficult. Doctors thought it was at first reflux but after many tests, we found out that she had contracted the ‘Respiratory Syncytial virus’ which is known as ‘RSV Bronchiolitis.’ A premature baby that is six months of age or younger is at especially high risk for severe RSV disease as they were born before their lungs and respiratory system could fully develop. After one week of being in hospital, Addison became very unstable and was struggling to breathe. All I could do as a mother was to express my breast milk, pray and hope that it might provide Addison with some strength, immunity and a chance to fight this awful virus. A change of overnight Doctors and pleading from me to help caused a change in hospitals that saved Addison’s life.
The Care Flight team were called in to assess Addison. They agreed that she needed Specialist one-on-one care and their advice was to move her to the Paediatric Intensive Care Unit (PICU) at Westmead Children’s Hospital. It was only a 35-minute ambulance drive between the two hospitals but Addison was so unstable that they couldn’t transport her for four hours until her breathing stabilised. The next day, Addison’s left lung collapsed. Our Paediatrician explained that Addison was fighting so hard to breathe that she couldn’t fight the virus as well. She was then placed into a self-induced coma for the next two weeks to allow her tiny little body to fight the virus and a machine took over her breathing. A day after this occurred, during a routine paediatric screening, they uncovered that Addison had enlarged ventricles in her brain during a routine brain ultrasound. We were told to watch her closely, check the head circumference measurements and keep in close contact with a Paediatric Neurosurgeon.
Addison stopped breathing on two occasions but miraculously survived. She was released from the hospital a month later and regular check-ups showed that her brain was slowly swelling with the increasing head circumference measurements. Addison continued to be such a happy baby regardless of these medical problems. At seven months of age, Addison became very irritable and was screaming which was very uncharacteristic. The Neurosurgeon urged us to bring Addison back to hospital and the next day she endured her first brain surgery, an Endoscopic third ventriculostomy (ETV). An ETV is a treatment for obstructive hydrocephalus where cerebrospinal fluid (CSF) collects in the brain. Ventricles may be enlarged when there is blockage of CSF flow called hydrocephalus. The surgery is a success for 50% of patients and unfortunately Addison was not one of the lucky ones.
At eight months old, she endured her second life-saving brain surgery where a Ventriculoperitoneal (VP) shunt with a Sophy programmable valve was inserted into her brain. This device relieved the pressure on Addison’s brain caused by fluid accumulation and is still in situ today. Addison has had some painful headaches at the base of her skull in the past few years and has been diagnosed with Chiari malformation, a condition in which brain tissue extends into her spinal canal. We keep a diary of these headaches and hope and pray that she may not need any further surgery. Shunts save lives and in this case, it saved our daughter’s life which we are eternally grateful!
Addison is nearly 15 years old now and is in Year 9. She is happy, energetic, full of life and above all very healthy. She cannot play any contact sport but loves playing netball, touch football and Oztag. Addison is a twice National Champion in American Cheerleading too. She is highly intelligent and achieves academic awards at her college. She wears a medical ID bracelet and all of her friends know what to do in an emergency.
From the first day of Addison’s life, we knew that she was a fighter and my Aunty said proudly that Addison is alive because she has a destiny to fulfill… Addison Rose is our very special Hydro Warrior Princess!
