A mother's story on caring for a son with rare Infantile Spasm disorder

By Kim Abrahams
27 April 2017

The syndrome is characterised by spasms in babies, thus giving it the name Infantile Spasms (IS) and leads to regressed development.

Just when she thought she had her son back, fate intervened and stole him away.

Karen Brits, a mother from Kraaifontein in Cape Town, is heartbroken as she shares her story with YOU.

Her little boy, CG, suffers from West Syndrome, a type of seizure experienced by infants and toddlers. The syndrome is characterised by spasms in babies, thus giving it the name Infantile Spasms (IS), and leads to regressed development.

CG was born at 34 weeks after complications with Karen’s pregnancy forced doctors at Tygerberg Hospital to perform an emergency Cesarean section.

Read more: This mom’s brutally honest account about life after ‘pushing out a baby’ is a must-read

“He wasn’t receiving enough food and oxygen,” the mother tells YOU. “Doctors said he was better off outside than inside.”

Karen (34) and her husband, Daniel (38), welcomed their tiny champion on 13 January 2016.

CG touched the scale at a mere 1,540 kg at birth and was immediately taken away to receive the necessary medical attention.

CG BRITS 2

“When I saw my baby for the first time, my first thought was, ‘If it’s God’s will to take him and not leave him with me any longer, then God should do so immediately’.

“I even told my father that. That such a tiny body had that many tubes attached to it, broke my heart. I had to carefully look at the painful sight to find my son among those tubes.”

CG developed infant jaundice, a condition where the baby’s skin and eyes turn yellow and is common in babies born before 38 weeks. Doctors asked the Brits’ permission to perform a full blood transfusion to reduce the level of the yellow compound bilirubin in his blood.

Read more: ‘I know I’m not supposed to say this – but I wish I had never had my children’

“It was the most dreadful time of my life,” an emotional Karen says. “It took me back two years to when my daughter was also born unhealthy.”

Her newborn baby suddenly had low blood sugar levels, which persisted for more than a month. He spent the time in ICU, where his condition seemingly improved.

CG BRITS 3

CG was eventually discharged from hospital, after spending the first two months and two days of his life connected to machines.

The Brits’ journey was far from over and, once home, they noticed something that would change their lives forever.

“I noticed he’d make funny upward movements when he woke up. He’d do a few of those and then start crying terribly,” Karen remembers.

The Brits decided to take him to the doctor, where initially it was thought CG was simply allergic to his milk formula. Karen changed it but the “funny movements” continued.

It was only after Karen caught one of CG’s episodes on camera and showed it to the doctor that a form of epilepsy was suspected. A professor of neurology, Regan Solomons CONFIRM PLEASE, confirmed the boy’s diagnosis: CG suffered from Infantile Spasm.

Read more: ‘Apart from her head she’s perfect’

Doctors immediately began with treatment and the little boy’s spasms were brought under control.

“My son has been spasm-free for the past four months, but physically he’s very behind,” explains the mother sadly.

“He can’t do things babies at 16 months can do. In fact, his development is so behind, even six-month-old babies are ahead of him.”

Her child’s illness has forced Karen to quit her job and devote her time to her little fighter.

“The road is immensely difficult for a parent who has a child suffering from IS. Every day and night are a mission on its own."

CG BRITS TODAY 2 CG as he looks today.

“You never know when the monster will strike again and then there are the questions from a four-year-old, asking why other babies can crawl and sit up while her brother can’t.”

Karen wants to raise awareness about IS, an issue she says is close to her heart.

“How many children don’t suffer from the sickness and it never gets spoken about or is mistaken for something else?

“My entire life changed when CG was born. I gave up my job to look after him. Things changed in the blink of an eye.

“But by the grace of God, we continue every day.”

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