Joshua was born premature at 33 weeks gestation 20 June 2016, his head circumference of 45cm was more then his length of 43cm to emphasize the amount of access fluid in his brain. He had the first brain operation to insert a VP shunt at 10 days old.
What is hydrocephalus?
Hydrocephalus affects 1 in every 500 babies, the cause is still unknown. It then pools, causing a buildup of fluid in the skull.
Hydrocephalus (also called “water on the brain”) can make babies‘ and young children’s heads swell to make room for the excess fluid. … If it’s not treated, hydrocephalus can lead to brain damage, a loss in mental and physical abilities, and even death.
The doctors did not expect him to survive, he was on a ventilator and we had many setbacks, he started having seizures and his brain was hemorrhaging losing large amounts of blood.
He had several blood and plasma infusions to keep him alive. He spent the first 2 months in Neonatal ICU; he fought like hell and pulled through.
He is dependent on a shunt to live (a thin piece of plastic tubing with a catheter), which drains the fluid from his brain to his stomach. He has developed many conditions as a result of Hydrocephalus, namely Cerebral Palsy (Hemiplegia), severe Cortical Visual Impairment, Hip Dysplasia, Epilepsy, Chiari Malformation, Scoliosis, missing Septum Pellucid, global developmental delay and hypertonia. We are just an average couple with no significant medical history, so having a medically complex child has been a great shock to us.
He has had a total of 5 operations in his short existence, 3 of them being brain surgeries, uncountable hours of therapy and doctors appointments. His daily activities are so challenging and he cannot perform any tasks independently such as sitting, standing, crawling, playing, eating or drinking. He needs an Occupational therapist, Physiotherapist, Speech therapist and a Vision therapist including the need for a caregiver to carry out these various therapies on a daily basis.
Although he has many conditions, the fighting spirit in this child is remarkable, he has come such a long way and is getting very close to sitting and crawling each day. He is beating the odds and with the right treatment and therapy has a chance at developing normally.
Stem cell treatment will help him have a better quality of life and we are hoping it will specifically help with his vision, as he is practically blind. Stem cells have the ability to regenerate and repair the damaged brain cells. Duke University in America has performed thousands of stem cell infusions specifically for children born with this condition.
The results have always been positive, helping the child with one or more functions, we can never determine exactly how it would help in each case but considering the many conditions Joshua has, even eliminating one of them would be a huge success.
From the time he was born we have done our best to manage this extremely difficult and expensive situation on our own, the financial toll on our family is overwhelming and we need to ask for financial help to fund Joshua’s stem cell treatment and continued therapy there after.
Please open your hearts to give this little warrior a chance at living a “normal” life.