Mom won’t stop fighting for Joshua
A MIDRAND mother will go to the ends of the Earth to ensure her sickly blind child, who has experienced more pain and challenges than most adults, has a fighting chance of leading a normal life.
A determined Phillecia Naicker is on a mission to raise funds so that her infant son Joshua receives stem cell treatment in the US, which could eliminate some of his many conditions.
With the help of Dukes University, a private research university in Durham, North Carolina, 29-year-old Naicker is hoping to use her 2-monthold son Gabriel’s stem cells from his umbilical cord to help Joshua, who was diagnosed with hydrocephalus.
“Duke University 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,” said Naicker.
“We can never determine exactly how it will help in each case, but considering the many conditions Joshua has, even eliminating one of them would be a huge success.
“Although he has many conditions, the fighting spirit in this child is remarkable. He has come such a long way and is getting close to sitting and crawling each day. He is beating the odds, and with the right treatment and therapy, he has a chance at developing normally.”
Reflecting on the past two years, she said she was not prepared for the late night breakdowns, and numerous hospital stays when she found out she was pregnant.
“My husband, Bradley (36, a network administrator), and I were excited when we found out we were expecting, and when it was time for the baby’s sex to be revealed, we took a video camera and wore our best smiles. I was five months pregnant, and everything was going well, or so I thought,” said Naicker.
“But soon after the gynaecologist announced we were expecting a boy, he grew silent.”
The eager couple watched as his facial features transformed – from happiness to concern. He then began taking measurements of the unborn child on the ultrasound machine.
“When we questioned what had happened, we were told our son’s head was larger than it should be. We were told he has hydrocephalus. At first, we did not know what he was talking about and later found it is where there is an accumulation of cerebrospinal fluid in the brain. I was devastated, but still not prepared for what we were about to face.”
Naicker’s water broke at 32 weeks, she said, and doctors only managed to delay the delivery by a week.
“He was born 43cm long, and his head was 45cm,” she said in tears.
“Ten days after his birth, doctors operated on him to relieve the pressure of the fluid on his brain. They inserted a ventriculoperitoneal (VP) shunt, which allowed the fluid to drain from his head to his stomach.
“He was placed on a ventilator, and soon started experiencing seizures. He had been losing blood and was haemorrhaging. Two days after the procedure, he needed several pints of blood and plasma.
“We don’t know how we handled it,” she said.
“Both my husband and I were devastated. This was our first child, and we found ourselves questioning why it had to happen to him and prayed for his health.”
After two months in hospital, Joshua was discharged but returned to hospital days later.
“A week after taking him home, we noticed that not only had he been crying a lot but he felt limp and lifeless. Fearing the worse, we rushed him to the hospital and found out his VP shunt was blocked. We spent another week with him in hospital, while doctors replaced the shunt.”
For the Naicker family, their journey with baby Joshua’s health did not get any better. From 2016 until now, he has been hospitalised several times.
He underwent various operations, including one for a hernia, picking up meningitis, a brain operation and more recently for undescended testes.
She told that her little boy is now scheduled for a hip dysplasia operation.
“Although Joshua’s body is fully functional, the hemiplegia makes the left side of his body feel stiff and he now needs to go for this operation.”
After years of research, the Naickers have found a possible solution to their son’s medical condition that may afford him a chance at a normal life.
“Since he was 5 months old, Joshua has been going for occupational therapy. He also has a physiotherapist, speech therapist and has started vision therapy because he is currently blind.
“He was diagnosed with Chiari malformation (a structural defect at the base of the skull that affects balance), missing septum pellucidum (partition between brain hemispheres) with possible agenesis (incomplete development) of the corpus callosum (broad band of fibres between brain hemispheres).
“He was also diagnosed with cerebral visual impairment, hemiplegia (cerebral palsy), global developmental delay (delayed milestones), scoliosis (abnormal lateral curvature of the spine) and brachycephaly (having a relatively broad, short skull), hip dysplasia and epilepsy.
“We have tried to find help locally, but the help he needs is not offered in the country. That is why we need to travel abroad.”
Stem cells, said Naicker, have the ability to regenerate and repair the damaged brain cells.
“We, however, need funds to pay for the procedure. We have already spoken with families, whose children underwent the procedure and they say it has worked tremendously.”
She said Gabriel, who does not have medical issues, was their unplanned blessing.
“We were extremely scared when we found out he was on his way. At the same time, we were happy and so positive at the prospect of using his stem cells from his umbilical cord to help Joshua, as we had been researching stem cell treatment.
“Although we were so positive, it did not stop the anxious feeling at each gynae appointment, questioning the doctor about every organ and every area of his brain as we were well prepared this time. God has a plan and purpose for everything, so we trusted in him.”
Naicker said Joshua’s case was not hereditary.
“The cause is unknown, but there are some cases which are hereditary, and research is currently being conducted at Yale University. More awareness needs to made about this condition so that more resources can be made available to find the cause and a cure.”
She said it affected 1 in every 500 babies.