Simon is swimming 10km upstream in Snowdonia on October 7th for Level Water because I owe charities for their support of Olivia.
Before Olivia was born, on 25 September 2016, a parasite called toxoplasmosis found its way into her. It caused inflammation in her brain and eyes causing irreparable damage as well as reducing the capacity of her liver thus causing her to have a high level of jaundice. She was born two months early by emergency caesarean section weighing 4 pounds or 1.8 kilograms. After a double volume blood transfusion and surgery to aid her lungs Olivia spent the first three months of her life in NICU (Neonatal Intensive Care Unit) in four different hospitals; Great Western Hospital, Swindon, St Michael’s, Southmead and Bristol Royal Hospital for Children. She had her brain operated on on three separate occasions during this time. The first two operations were to insert and then adjust a reservoir to allow doctors to ‘tap’ spinal fluid from the brain to ease the pressure and the third was to insert a shunt which continuously drains, via a pressure valve, the same fluid from the brain to the tummy. She was transported in an ambulance under blue lights 11 times during this time. Olivia was discharged on 19 December 2016 just in time for Christmas. Her medication includes toxic chemicals akin to chemotherapy drugs that she must take for a year as well as some supplements to counter the side-effects of the drugs as well as eye drops that must be given four times a day. Since leaving the hospital the roller coaster ride has not stopped. We have been on holiday with Olivia and enjoyed wonderful times with her. Olivia’s development since leaving hospital has not been good.
She started losing weight at one point so a naso-gastric tube had to be passed through her nose into her stomach for us to top up her breast-feeds with a prescription milk. She has not learned to eat solid food as she can’t see and has an oral aversion so she hates anything going near her mouth after so much medicine was forced on her when she was smaller. Olivia is almost a year old and she cannot sit up; an indication along with other signs like the resistance in her muscles in her limbs that she has cerebral palsy. The toxoplasmosis has ruined her left eye and her right eye is being closely monitored by Great Ormond Strret Hospital. Olivia had a seizure that lasted about 3 minutes. The subsequent EEG (ElectroEncephaloGram or brain scan) showed an abnormal result and that Olivia was prone to seizures and seizures that are so extreme that they will be hard to control. There was a chance that Olivia wouldn’t have another episode but the next seizure resulted in Olivia fitting after a period of floppiness for 18 minutesand earning her 13th ambulance ride. Olivia is now on anti-epileptic drugs as well and her life expectancy is 20-30 years.
Now that Olivia has had her first birthday I intend to support the charities that have supported, are supporting and will support her through events such as this one.