When Maddie was born earlier this year, her mother Lauren Burrough felt blessed after giving birth to a seemingly happy and healthy baby.
However, just a week later, Maddie’s heart rate was three times faster than it should have been.
“There was no indication of anything being wrong during pregnancy, all the tests were normal,” Burrough told 7NEWS.com.au.
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“But shortly after she was born, she had feeding issues and a heart murmur.”
Testing at The Children’s Hospital at Westmead confirmed Maddie had a rare atrial ectopic tachycardia — a fast and abnormal heart rhythm — as well as two holes in her heart.
Now, Maddie is four months old and Burrough and her husband are navigating a world of expensive medical bills and endless appointments.
“She’s got low muscle tone, she’s had some issues with her eyes and she was aspirating milk when she was feeding, so she can’t be bottle-fed,” Burrough said.
Maddie’s condition is caused by a rare genetic issue, Burrough explained, however, neither she nor her husband carry it.
The condition is known to cause neurodevelopmental delays as well as poor eyesight and seizures, however, Burrough says their aim is to “get on top of these issues as soon as possible to give Maddie the best quality of life”.
“It’s been exhausting … we are struggling to be honest, we just didn’t expect any of this,” she said.
“We’ve had days where I’m in tears and apart from the financial hardships, we haven’t even had a chance to just enjoy being with her because of all of this.
“It’s very frustrating.”
Burrough and her partner now face the uphill battle of getting Maddie the best possible care, while also dealing with the many financial hardships due to medical bills and associated expenses.
“We’re going to countless medical appointments and she’s on very expensive interim medications which aren’t listed on the PBS,” she said.
“We also have to do a lot more testing, including a lumbar puncture.”
However, the community has continued to rally around the Burrough family during this time, with a GoFundMe page organised by Lauren’s friend Lisa.
“This period of our lives has been extremely challenging and emotional for our family, but services like Go Fund Me give us hope, and we can’t be thankful enough for it and our beautiful friend that helped create it,” Burrough said.