Mother of girl born with an undiagnosed congenital heart defect urges parents to 'trust your instincts'

Helen Wesche was her daughter's advocate as she noticed differences in Quinn's health to her twin.
Helen Wesche was her daughter's advocate as she noticed differences in Quinn's health to her twin. Photo credit: Supplied

The mother of a young girl born with a hole in her heart is urging parents to fight for their child when they have a feeling something isn't right.  

Helen Wesche's daughter Quinn was four months old when she stopped gaining weight and lost muscle tone.  

"Compared to her twin sister, you could see that something was wrong," Helen told Newshub. 

It took around six months of explaining there was a problem before her concerns were validated. 

"I really pushed when I said there was something wrong and that she wasn't growing, I was back and forth to the doctors." 

The mother-of-three trusted her gut and kept monitoring Quinn, frequently seeking medical advice. 

Mother of girl born with an undiagnosed congenital heart defect urges parents to 'trust your instincts'

During one visit, Quinn's Plunket nurse agreed something was out of the ordinary and recommended a visit to their paediatrician. 

A chest X-ray revealed a shadow, and the doctor suspected Quinn had a small hole in the wall that divides the upper chambers of the heart. 

She was diagnosed at 11 months with a congenital heart defect (CHD), ASD (atrial septal defect). 

A CHD is the most common serious birth abnormality in New Zealand and there is no way to prevent it or cure it. It is also the number one cause of death in infants and babies. 

Her parents were devastated. 

"She had been alive for 11 months and struggling to live. We were kind of like, 'How was this missed?'"

Two months later, an echocardiography -  an ultrasound used to examine the structure and functioning of the heart - revealed the hole had grown. 

She spent the next few months in and out of hospital struggling to fight off illness. In June 2016, Quinn went into heart failure and required open-heart surgery at 17 months old. 

As they began to understand her condition, her parents had to be extremely careful as the common cold could easily turn into pneumonia. 

Everyday excursions out to places like the supermarket became extremely difficult as contact with the wrong person could have horrific consequences.

"Standard stuff for a normal kid could be life-threatening for her," Helen says. 

"You are constantly on the go, aware of what's happening, looking at her, is she struggling. As soon as she just sneezed you were worried, it's a constant worry." 

Quinn is four now. She doesn't have a strong immune system but her parents take it day by day. 

She has episodes where her heart starts racing so fast, she becomes like a rag doll, which appears to be related to heat. 

"Coming into summer, that's our biggest worry now." 

This year has been the first of no hospital admissions but Quinn still has to see her specialists. 

According to Heart Kids NZ, 12 babies are born every week in New Zealand with a heart condition. 

Every year in New Zealand, around 600 major heart surgeries are performed on children or babies (sometimes in their first few hours of life). For many this won't be their last, and they will continue to face the day-to-day challenges.

Mother of girl born with an undiagnosed congenital heart defect urges parents to 'trust your instincts'

In August, the Wesche family and friends participated in the 360Heart Stopper Challenge with Heart Kids NZ, which has supported the family through tough times. 

The 360Heart Stopper Challenge has been running for more than 15 years and was the idea of a father whose child was born with a CHD. 

Helen says she couldn't have faced Quinn's health battle without the network offered to them by Heart Kids NZ and their ongoing support. 

She says their help has been outstanding for the family, who live 45 minutes away from Starship. They've offered petrol and grocery vouchers as just the hospital's parking can put strain on the family. 

Heart Kids NZ also holds coffee groups where their kids can go in a safe place and discuss their children.

Mother of girl born with an undiagnosed congenital heart defect urges parents to 'trust your instincts'

As the family moves forward they try not to stress or worry while making sensible choices. 

Helen says that as medical staff struggled to pinpoint Quinn's illness, it made a huge difference to push back when symptoms were overlooked and always stuck to her belief that something was wrong. 

"You know your child more than a doctor does, you're with them every day. You're the one that knows them the best," she says. 

She urges other parents to trust their instincts and push for having them heard. 

"The one thing I learned through the hospital process, is sometimes you can just be treated like a number, and you're the only one that's going to stand up for your child.

"If you don't agree with something, speak up. Be your child's advocate." 

Newshub. 

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