Euroa couple fight to give their baby girl a chance

By John Lewis

Nothing is for sure on the journey towards birth. When a Euroa couple were told their unborn baby had half a heart, their world changed forever and they were faced with a terrible life or death decision. John Lewis reports.

At 22 weeks pregnant, Jessie Norman-Linke looks a picture of health. She smiles easily as she watches her two children, Bailee, 4, and Chayse, 3, playing. Yet, in the corner of her eye is a flicker of steel.

Two weeks ago she and her husband, Michael, were told their unborn baby had a rare defect called hypoplastic left heart syndrome.

The name sounds terrifying enough, but worse was to come.

Their world shifted after an ultrasound appointment at Benalla Hospital.

"The sonographer said she couldn't get a good image of the heart, so she sent us home," Jessie said. "Then we got a phone call telling us the doctor wants to see us."

Michael said that is when alarm bells went off.

"That's not normal, and that's when we we felt something was wrong," he said.

"The doctor said, 'we've picked up a problem and it's very serious'. That's when everything changed."

Euroa's Jessie and Michael Norman-Linke with the ultrasound picture of their unborn baby that began their journey.

Former veterinary nurse Jessie and engineering fabricator Michael, both 31, went home and did their own research. They found out the syndrome is a defect formed during pregnancy where the left side of the heart does not form correctly and affects blood flow. If left untreated the condition is fatal, but with surgery, survival rates are between 60 and 70 per cent by five years old.

Discussions with doctors at the Royal Women's Hospital in Melbourne presented them with three options: three open heart operations before the age of five; post natal palliative care leading to death; or termination before birth.

"It was a really hard appointment," Jessie said.

"There was a lot of talk about termination, we were told these kids have a really hard life. We went away quite devastated."

Then they found a support group for the condition on social media.

"That Facebook site was a game-changer," Jessie said.

"There were hundreds of these children, from newborns to 40-year-olds, and they were thriving.

"At first you think the worst — how can a baby survive with half a heart? But then you think, at least give her a chance — and we are fighters." 

For Michael, the decision against termination was instant.

"It wasn't even a thought that crossed my mind," he said.

Now, the tyranny of distance means Jessie and Michael face a more practical battle for their baby's life.

At 36 weeks, just before Christmas, the couple will have to relocate to Melbourne so doctors can monitor Jessie's progress and prepare for her baby's first heart operation within three days of birth. They have been told to prepare for a minimum six-month stay in Melbourne.

As a self-employed contractor, Michael is torn between continuing to work in Shepparton and keeping his family together during its most testing time.

"We don't want to let go of our life in Euroa, we want to keep Bailee and Chayse's life as normal as possible. That's at the absolute forefront of our minds," Michael said.

"We want to be together in Melbourne as long as we can and stay as a family."

But inevitably the couple face a big drop in income. 

"I'll probably have to go from 50 hours a week to 20. That's a big hole in your paycheck," Michael said.

Jessie and Michael have made their decision — and they are clear-eyed about it.

They realise that money is replaceable, but their daughter's life is not.

"I've been told it's a big commitment — but you look at your kids and you think if anything happened to them, we'd do our absolute best for them. The only difference is — they're out here, and she's in there," Jessie said, looking at her belly.

A GoFundMe page has been created for the couple.