Waikato mum’s fears for baby realised after seizures
They would last mere seconds, but to mum Crystal Gillies, they were a sign something was terribly wrong.
The sudden abnormal movements would contort baby River Kingi’s tiny body and leave her in visible pain.
River was born at Birthcare Huntly on August 30.
Despite a healthy birth, she was admitted to Auckland’s Starship Children’s Hospital in October after developing a fever and convulsions.
After almost a month in hospital, River was discharged home to Te Kauwhata with a care plan.
Over the next three-and-a-half months, her condition worsened and her seizures became more frequent.
Gillies, 29, said she would describe River’s convulsions to the numerous healthcare workers who would visit their home.
Constipation, reflux and colic were all offered as explanations.
Eventually, a desperate Gillies took River to Waikato Hospital on February 14 and insisted she be seen by a specialist.
A diagnosis of hypsarrhythmia, or infantile spasms (West Syndrome), was confirmed two days later following an EEG brain scan.
Gillies, who has four older children, has chosen to share River’s story in an effort to raise awareness about her daughter’s rare – and potentially debilitating – brain disorder.
River is currently responding well to a treatment of high-dose steroids and anticonvulsants.
‘‘Because I’m an experienced mum, I knew something wasn’t right with my baby and I kept asking questions,’’ Gillies said.
‘‘I couldn’t feed River properly and it was always difficult to put her down.
‘‘If I was a first-time mum, I wouldn’t have had the confidence to question what people were telling me and I would have just accepted they were right,’’ she said.
‘‘I’m disappointed that it took so long to diagnose River correctly and I want to help educate people about her condition.’’
Waikato Hospital general pedia- trician David Newman said infantile spasms is a rare condition and often hard to diagnose.
Waikato staff would generally see between zero to three babies a year with the condition.
About 6000 babies are born in Waikato each year.
Newman said the condition is typically caused by an underlying brain injury or abnormality.
Although infantile spasms could be challenging to pick up, video footage of the spasms is invaluable.
‘‘If you have an irritable child who cries a lot and makes funny movements, there’s a range of things that it could be,’’ Newman said.
‘‘A very good history from the families and caregivers is really, really important to whoever sees them and the best evidence is video. The key thing is the story and the video. But if you have been reassured, but remain concerned, don’t be afraid to go back.’’
Infantile spasms usually present in a baby’s first 18 months.
Because infantile spasms are linked to an underlying brain problem, affected babies have a risk of poorer developmental outcomes, Newman said.
‘‘If we are able to restore normal background brain function, they have the best chance of doing well. But overall, people who present with infantile spasms usually have an underlying brain reason and therefore frequently have developmental problems down the track.’’