'The doctor looked at me and said, 'She looks a bit yucky''

“They said they didn’t know 100 per cent what it was, but they referred me to the foetal medicine department."

Joel EricksonNews Editor

5 min read

July 1, 2024 - 11:36AM

Family Life

Don't miss out on the headlines from Family Life. Followed categories will be added to My News.

When Samara saw the positive pregnancy test in her hands, it was a mixture of elation and fear.

The Brisbane woman and her then-husband had been trying to conceive a child for seven years, and had gone through multiple rounds of IVF and a few miscarriages on their long journey.

So when the mum-to-be noticed some bleeding, she was naturally concerned.

Want to join the family? Sign up to our Kidspot newsletter for more stories like this.

“I had a few things at the beginning of my pregnancy with a subchorionic haemorrhage, and I got put on bedrest,” she said.

“I was just kind of waiting for it to fail. I know that sounds pessimistic, but it just always felt like something was going to happen.

“I was so in love with being pregnant, and that the baby was growing, but I knew deep down I was just waiting for the other shoe to drop.”

Samara and her ex-partner with Riley. Picture: Supplied

"There were a lot of tears and fears of the unknown"

Thankfully Samara got through the first half of her pregnancy relatively unscathed, but her 20-week scan threw up a curveball she couldn’t possibly expect.

Samara had gone in for a more thorough scan than a regular ultrasound because of the subchorionic haemorrhage, and doctors noticed something was wrong with her unborn daughter’s heart.

“They said they didn’t know 100 per cent what it was, but they referred me to the foetal medicine department at the Mater Mothers Private Hospital,” she said.

Her unborn child had mesocardia, a rare congenital heart condition where the heart is located in the middle of the chest rather than on the left side.

Introducing our new podcast: Mum Club! Listen and subscribe wherever you get your podcasts so you never miss an episode.

“There were a lot of tears and fears of the unknown,” Samara said.

“I’m someone that likes to know what’s going on, and always has a plan, and now we were just forced to wait and see.

“It was really hard to scan her because of the mesocardia because they couldn’t exactly see what was going on, so the diagnosis changed many times.

“It was a lot of nerves and uncertainty, but we were never told she was going to pass away, just that there would be operations.”

Riley spent time in the NICU, and required surgery, before she was allowed to go home. Picture: Supplied

"I got to hold her for about five minutes"

Samara was induced at 38 weeks, and gave birth to her daughter Riley via emergency caesarean section.

“I got to hold her for about five minutes after I came out of recovery, and then the next morning I got a phone call from the NICU saying they had to intubate Riley,” Samara said.

“By the time I’d got to her, she was already at the Children’s Hospital and fully sedated and intubated.

“She had coarctation of the aorta, so her blood flow wasn’t getting around her body, so she then developed necrotising enterocolitis in her gut.

“We were in a holding period for two weeks trying to get her stronger and get rid of the infection before they could operate.”

Three days after she returned home, Riley's health took a turn for the worse. Picture: Supplied

"Riley had been fighting, so I needed to fight with her"

Riley eventually beat the infection, and she was taken in for an MRI the day before her operation.

That’s when the doctors told Samara her daughter had injuries in multiple parts of her brain, and she was asked whether she wanted to go ahead with the surgery or put Riley into palliative care.

“I was on the phone to my mum on surgery day, and she told me Riley had been fighting, so I needed to fight with her,” Samara said.

“We got the neurologist back in and asked what it would look like, and he said there could be speech delays and learning disabilities, and I was like ‘Oh, I can deal with that. That’s fine’.”

Riley underwent surgery, one her surgeon said went “better than expected”, and they managed to do a full repair of her heart.

Samara and Riley. Picture: Supplied

"She's looking a little bit yucky"

However, three days after Samara and Riley went home, she noticed her daughter wasn’t looking right.

“I went to the GP, and she was sent straight back to the Children’s Hospital because her heart function had deteriorated,” Samara said.

“We had CT scans that looked fine, but the director of anaesthetists at the Children’s Hospital was holding her, and she looks at me and says ‘She’s looking a little bit yucky’.

“They put her on heart monitoring and called the emergency alarm, and then 30 people came rushing in. Luckily the CT room was right next to the PICU.”

Riley had gone into cardiac arrest, and she required another round of emergency open heart surgery.

Riley had two heart surgeries, and will likely require more in the future. Picture: Supplied

"We're teaching her to be really proud of it"

Looking back, Samara still isn’t quite sure how she got through the first few months of her daughter’s life, but she looks at her now three-and-a-half-year-old daughter and says it was all worth it.

“If you didn’t know (about Riley), you really wouldn’t know,” she said.

“I do scare a lot of mums and dads at swimming lessons, because I just don’t see her scars anymore. We like to call them her sparkles.

“It’s confronting for other families, but we’re trying to teach her to be really proud of it.

“She’s a bit delayed in learning and her speech, but we’re working on it. And now she’s got a little sister too.”

Riley’s heart function has remained strong since her second surgery, but Samara recognises that she may require more help in the future.

Riley is now three-and-a-half, and her prognosis is extremely positive. Picture: Supplied

"I was just terrified of losing her"

Thankfully for Riley and her family, medical advances have made her prognosis look better and better.

One advancement includes a new type of surgery where a bio-printer is used to create ‘patches’, like a band-aid, that can replace or repair damaged areas of the heart.

Now, Riley is expected to live a full and happy life, no matter what may come.

“I asked her cardiologist not long ago because I was just terrified of losing her, and he said that he thinks she’ll grow to be an old adult,” Samara said.

“She’s obviously going to have surgeries, and it’s going to still be a lot of wait-and-see, but it’s very positive.”

Samara is sharing her story in support of the Heart Research Institute. For more information, or to donate, click here.