Full of hope for Charlee’s heart

By John Lewis

Birth is always a powerful experience, packed with pain, emotion and struggle.

But for three-day-old Charlee Mae, the real struggle is only just beginning.

Mum Jessie Norman-Linke, a former Euroa veterinary nurse, gave birth to Charlee at the Royal Women's Hospital in Melbourne on Monday knowing her daughter had the rare heart defect hypoplastic left heart syndrome.

The condition means the left side of the heart does not form correctly and blood flow is affected. Effectively, it means Charlee has half a heart. If left untreated, the condition is fatal, but with surgery, survival rates are between 60 and 70 per cent by five years old.

Charlee is about to undergo her first open-heart surgery today at the Royal Children's Hospital.

Jessie said she had been filled with a flurry of emotions since giving birth.

“Mostly I am feeling thankful — for the support from the medical staff and the support and love we have received from everyone around us,” she said.

Mum Jessie Norman-Linke says an emotional farewell to new-born daughter Charlee Mae before she is taken to the Royal Children's Hospital to prepare for open heart surgery.

Parents Jessie and Michael have known about Charlee's condition since an ultrasound at Benalla Hospital picked it up when Jessie was 20 weeks pregnant in August last year.

Discussions with doctors at the Royal Women’s Hospital presented a grim scenario.

Jessie and Michael were faced with three options: three open-heart operations before the age of five; post-natal palliative care leading to death; or termination before birth. The couple chose the first option.

“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,” Jessie said at the time.

The family had to relocate from Euroa to Melbourne before Christmas to support their baby daughter during her long future journey of medical treatment.

Jessie said Charlee was born via ceasarean section at a healthy 3.05 kg with a good heart rate at 11.30 am on Monday.

“I was able to have a cuddle skin-to-skin before they took her away to stabilise her,” she said.

Jessie Norman-Linke with son Chayse, 4, and Bailee 5, earlier this year awaiting for the arrival of Charlee Mae.

Today, Charlee undergoes the first of three heart surgeries called the Norwood Procedure to build a new aorta and create a functioning blood-flow system.

At the same time, Charlee's own stem cells will be injected into her heart to make it stronger.

Jessie said it was an exciting time for the whole family — and not just because of Charlee's arrival.

Charlee's birthday falls in the middle of her sister Bailee's on January 5 and brother Chayse's on January 7.

“We're on a three-day birthday bender,” Jessie said.

As for the future — Jessie said determination and hope would get them through.

“I am so full of hope and love, and an unwavering belief that she is going to have the most extraordinary life, and that's what gets me through,” she said.