Siblings fitted with heart devices after new test finds hidden deadly condition
This brother and sister look like most other children – happy, healthy and full of energy – but inside their chests are tiny devices keeping them alive.
Mehr and Agastya Sood look like most other children – happy, healthy and full of energy – but inside their chests are electronic devices keeping both of their hearts working, after new genetic testing revealed the siblings were suffering from a hidden, and potentially deadly, condition.
Mehr, now three-years-old, was first to be fitted with an implantable cardioverter-defibrillator (ICD) 18-months ago, after she suffered a terrifying cardiac arrest at their Pymble home – which her parents Abhishek and Mansi initially thought was a seizure.
“We thought we had lost her,” Mansi told the Telegraph.
“The paramedics were performing CPR on her and she was blue, so they gave her five shocks before the rhythm of her heart was restored.”
Little Mehr was rushed to hospital, where her parents still remember doctors saying the haunting words: “It does not look good”.
“There was just a nine per cent chance she would survive, and they told us she would have some kind of brain damage,” Mansi said.
But three days later, she was acting like a “normal kid”, up and about, with no signs she’d almost died – which left doctors baffled.
The decision was made to test Mehr for a genetic condition known as Brugada Syndrome, a rare and potentially fatal heart arrhythmia, which returned a positive result.
She underwent surgery and was fitted with an ICD, to keep her heart safe and protect her from any future cardiac events.
“She’s a very feisty kid, she has a big personality, so she loves to tell people that she has a ‘device’ … She’s very proud of it,” Mansi said.
In the months following, using new genetic testing developed by scientists at the Victor Chang Cardiac Research Institute (VCCRI), doctors uncovered that her older brother Agastya, then just five, also had the same hidden condition.
And just last month, he too was fitted with an ICD to protect him from suffering the same way his little sister did.
“We didn’t want to take the chance, we’ve seen how serious it can be, so we made the decision to have my son get the ICD,” Mansi said.
“He was present in the room when (Mehr) was getting the shocks, he saw it all, so when we told him he needed a device too, he said he wanted one.
“He looks at it as a blessing, like someone is watching out from him constantly.”
The testing revealed Mansi was the carrier of the genetic mutation, which she said “broke her heart”.
“I carried a lot of guilt that I passed it on to my children. We almost lost Mehr, and she could have been damaged for the rest of her life, so I only wish I could have done this test before I was pregnant,” she said.
“I’m 35 and nothing has happened, but that doesn’t mean it can’t.
“Now that the kids are sorted, as a parent you feel you need to protect them first, now it’s time to consider myself so I’m going back and forth with my cardiologist about my own ICD.”
The new test measures how genetic variants in the sodium channel gene affect electrical activity in the heart. And according to VCCRI Professor Jamie Vandenberg, the breakthrough testing enables more accurate genetic diagnosis.
“This approach helps us move beyond uncertainty and gives patients and clinicians clearer answers,” he said.
“We’ve already seen the impact of this work in clinical settings,” added senior scientist Dr
Chai-Ann Ng.
“In (this) case, the test helped reclassify a variant and led to lifesaving treatment for a child with Brugada Syndrome.”
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Originally published as Siblings fitted with heart devices after new test finds hidden deadly condition
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