Phillecia and Bradley Naicker from Midrand, Joburg, had a normal pregnancy. They were not expecting any surprises until their baby boy, Joshua, was born prematurely at 33 weeks with a head circumference of 45cm that will filled with fluid. He was diagnosed with hydrocephalus, a condition that affects one in 500 babies. The cause is unknown.
The primary characteristic of hydrocephalus is excessive accumulation of fluid in the brain. Previously known “water on the brain”, the “water” is actually cerebrospinal fluid (CSF), which is a clear fluid that surrounds the brain and spinal cord.
The accumulation of CSF causes an abnormal dilation of the ventricles in the brain which can cause potentially harmful pressure on the brain tissue.
“The diagnosis came as a complete shock,” says Phillecia. “We’d never heard of this condition before and our family, on both sides, does not have any significant medical histories.”
Bradley says the initial diagnosis was devastating. “The gynae didn’t give us any other information except that our baby has a large head. We remember researching the condition as soon as we got home after the doctor’s appointment and the images and information we found were frightening to say the least. Our world fell apart and the pain was unbearable.”
When Joshua turned one, the Naickers received further diagnoses – cerebral palsy (Hemiplegia), severe cortical visual impairment, hip dysplasia, epilepsy, chiari malformation, scoliosis, missing septum pellucidum, global developmental delay and hypertonia.
“It was one thing after another; it was overwhelming.”
Joshua needed an urgent operation to drain the excess fluid from his brain. It was a difficult time for Phillecia and Bradley who were still reeling from a premature birth.
"We just had to be strong, we had to put our own feelings aside and just be there for him. There was no other option for us. We find that we are still dealing with feelings and emotions from back then. We couldn’t even look at his hospital photos until a few months back,” says Phillecia.
Joshua is almost two years old and has had a total of five operations – three of which were brain surgeries.
Despite this difficult start to life, Joshua has a personality like no other. “He is such a happy baby and has the cutest personality. He is also such a charmer with the girls, his expressions and baby talk are just too adorable,” says Bradley.
“People may read about his diagnosis and many conditions and may picture a very sick child but he’s the complete opposite of this,” says Phillecia. “Nothing can keep this child down, not even his recent operation on 9 May related to his hip dysplasia – he has to wear a cast for six weeks. But he’s a fighter; he never gives up.”
His parents say he hardly ever cries but when he does, just a tickle or reciting his favourite sounds or nursery rhymes has him laughing in an instant.
“He loves music and the sounds of aeroplanes, dogs barking, cats meowing, the sound of a cow, birds singing, the sound of his dad pretending to be the boogey man and many others. His laugh is contagious and he can put a smile on anyone's face, even if they are having a bad day,” says Phillecia. “He has the most beautiful smile, a smile that can capture anyone's heart. He exudes love and happiness.”
Limited treatment options
Hydrocephalus is treated with either the insertion of a shunt to drain the excess fluid or an endoscopic third ventriculostomy procedure, which creates an opening in the third ventricle in the brain to allow trapped CSF to escape – Joshua has both.
“However, the other conditions he has developed as a result of brain damage from hydrocephalus has no medical treatment except for stem cell treatment that is not offered in SA,” says Bradley. Unfortunately doctors were unable to offer the family any information other than what they could find online.
“It was not easy as we kept going for second, third and sometimes fourth opinions – all at our cost. We have seen a number of different doctors and although most were unhelpful and lacked knowledge themselves we have found a good few which we have held on to,” says Phillecia.
After Joshua was born, they could not accept that nothing could be done for Joshua and they began researching his condition.
“Our research led us to the work at Duke University but they were using the child’s own stem cells from the umbilical cord at birth, we were disappointed as we didn’t bank his stem cells,” says Bradley.
They then discovered that stem cells from a sibling could also be used. “With him being our first child, this was an option for us in the future. We never anticipated how soon that would be though," says Phillecia.
After Joshua turned one, they discovered they were expecting their second child. "This unplanned blessing made us very scared but so happy and positive about the prospect of using the baby’s stem cells for Joshua.”
Although they knew that Joshua's case was not hereditary, they were worried for their second baby as the cause of Joshua's condition is unknown. Hydrocephalus can sometimes be hereditary but most causes are unknown.
“Research is currently being conducted at Yale University regarding the cause. More awareness needs to be made about this condition so that resources can be made available to find the cause and a possible cure.”
Joshua needs the stem-cell treatment before he turns two on 20 June 2018 to guarantee the highest success rate possible – and his parents need to raise R400 000 to make this happen.
Juggling parenthood and therapy
Juggling Joshua’s doctor’s appointments and therapy is challenging for the Naickers who both work full time. “Not only do we need to accommodate therapy sessions but doctors’ appointments as well and as you can imagine he needs an entire team of different specialists,” they say.
Therapy sessions are scheduled on weekends but doctors’ appointments happen in the week.
“We were lucky to find good therapists who can accommodate us over weekends. We need to carry out exercises and activities on a daily basis. It is a lot to do, but he is so worth it,” says Bradley.
“We have a good schedule which we try to stick to so that we don’t forget anything and also diarise all appointments. We are also blessed that our employers understand when we need to take leave,” says Phillecia.
The Naickers never thought that they would go through an experience like this.
“You just have to take it one day at a time. You hear of many people saying this, but when you are put in a situation like ours, there is no other choice and you realise the true value of this basic action. Thinking about the future is overwhelming for most but more so in our case. We have enough to deal with every day so don’t add unnecessarily to your load,” says Bradley.
Phillecia adds, “Just love and enjoy your baby with all your heart. At the end of the day, your love is all they know and feel and will be key to their recovery. Do your research, become an expert on your child’s condition, be your child’s advocate. Fight for your child and never give up – it will all be worth it.”
Image credit: Supplied