Erin and Jacob’s little boy Finley was born with a form of spina bifida. The first time parents discovered his condition at their 20-week anatomy scan, changing their lives forever.

Finley was diagnosed with myelomeningocele—a severe type of spina bifida where the membranes and the spinal nerves protrude at birth. At just a tiny one-day old, Finley needed major spinal surgery.

“He was also born with hydrocephalus (condition where excess cerebrospinal fluid builds up on the brain) requiring a VP shunt at only a few weeks old. On top of this, Finley has Chiari malformation (condition where brain tissue extends into the spinal canal), with both conditions going hand-in-hand with spina bifida,” Erin said.

At birth, it was noted that Finley had stridor (noisy breathing that occurs due to obstructed air flow) requiring immediate continuous positive airway pressure. This resulted in a tracheostomy at six-weeks-old—Finley was now also diagnosed with bilateral vocal cord paralysis.

“Since his tracheostomy, Finn has been a completely different baby and has thrived ever since. We knew with this diagnosis that Finn’s journey was going to be a life-long challenge, but with us by his side, he can take on anything and everything.”

Finley’s journey at the RCH started before he was two months old. He was transferred by the PIPER service as he required overnight ventilation and specialised care from the respiratory team.

“Our new home was the Sugar Glider ward. We transferred all of Finley’s care to the RCH which involved a total of six different medical teams. The transition has been challenging but definitely worth it.”

“He has undergone four major surgeries, countless MRIs, X-rays, numerous lines and blood tests, scopes, sleep studies and a lengthy hospital stay in his short life.”

Even when Finley has been at his sickest, his parents can attest to his strength and resilience.

“He makes us proud every single day. His little personality grows bigger and brighter every day and we absolutely love seeing him shine.”

“He has taught us the true meaning of love—we never knew love like this existed! Whenever times get tough, we always think about the hardship he has been through and are then quickly remember that we as a family can get through anything.”

“The hardest part about our journey so far is the lengthy hospital stay, being so far away from home and not having your support system close by due to COVID. Finley met his Grammy and Nanny at seven weeks old!”

As Finley turns one next month, spreading awareness about spina bifida is extremely important to Erin and Jacob and they are constantly working to break down the stigma of having a child with a disability.

“There is almost a sense of judgement when people know you continued on with a pregnancy knowing this.”

“Spina bifida and especially Chiari malformation isn’t hugely known in Australia. Both Jacob and I work in the medical field and we didn’t know much, or anything, about spina bifida.”

“It’s important to us that people are educated about what it is, what it involves and how it is a ‘snowflake’ disability—it affects everyone so differently—no spina bifida child is ever the same. We ultimately just want people to know that Finley is just like every other baby, just with a few extra bits!”

As he grows up and remains in battle with his medical conditions, Finley continues to flourish with the unwavering support of his parents and treating team.

“Finley touches the hearts of everyone he meets. He was born with spina bifida, but it does not define him—he is more than just his disability.”