Brave Tommy inspires VACTERL awareness
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A first birthday is traditionally cause for family celebration. For the Gaffke family of Yarragon South, the first birthday of Tommy held much more significance.
After a brave battle in his first weeks of life, Tommy is surpassing all expectations with his VACTERL association diagnosis. Never heard of VACTERL - the Gaffke family is working to change that.
Such is their commitment to the cause, Tommy's parents Stephenie and Kahl have vowed to compile an education resource for Australian families.
"The hardest thing is not knowing, and that's why we want to help so that other families going through it can be educated," Stephenie said.
Their next goal is starting a foundation to raise awareness and support families.
Stephenie says most foundations start after a terrible outcome, "it often takes a life to get the word out there".
However, in this case, the grateful family have a boy full of smiles and positivity to motivate and push them to achieve these goals.
"Such a good, great outcome. We could never have asked for a happier boy."
"It's been a bit of a rollercoaster and there will be ups and downs to come," Stephenie added.
VACTERL association is a disorder that affects many body systems. VACTERL stands for vertebral defects, anal atresia, cardiac defects, tracheo-esophageal fistula, renal anomalies, and limb abnormalities. People diagnosed with VACTERL association typically have at least three of these characteristic features. In Tommy's rare case, he has all the characteristics.
The Gaffke family has never shied away from their goal of raising awareness. A Facebook page created to share Tommy's early days with close family and friends eventually morphed into a public awareness page titled "Tommy's story with VACTERL association".
Thomas Ian Gaffke was born on June 25, 2021 kicking and screaming as expected. After a quick peak over the curtain, Tommy was taken to be assessed and was noted to have an imperforate anus and undeveloped thumb. He was being taken to Stephenie when he turned blue.
Rushed to the Royal Children's Hospital, Kahl was advised there was a 50 per cent chance of Tommy surviving the trip and 30 per cent of him surviving his first surgery.
He had immediate surgery to repair his trachea and oesophagus as it was not connected to his stomach, as well as TOF surgery.
The next weeks were filled with procedures and meetings for issues such as his heart being on the wrong side of his body, stabilising his breathing, pelvic kidney and additional ribs.
Although Kahl had a cuddle the day after he was born, Stephenie wasn't released to meet her son until he was five-days-old and finally got to hold him at 12-days-old.
At three-weeks-old, Tommy needed chest compressions after going into cardiac arrest.
"It's not something I would ever wish on anybody having to make that call," Stephenie said.
After fighting that obstacle, Tommy was just over seven-weeks-old when the hospital staff starting putting "home" and "soon" in the same sentence. They left hospital four days later much to the delight of his big sister Sammi who finally got the chance to give him a cuddle.
Whilst Tommy still has health challenges to come, the family can now focus on their next steps of raising VACTERL awareness.
"We take every opportunity to educate and inform as many people as we possibly can," says Kahl. This includes medical professionals, paramedics and, in the future, his teachers.
Kahl hopes it will also help Tommy to achieve a life as normal as possible. Worried about bullying and inclusiveness in his future, Kahl wants the community to know that just just because somebody might not look like they have a disability, they could still face difficulties in everyday life.
"Just raising the knowledge in the community. For all disabilities, not just VACTERL," Kahl says of the family's aims.
Vowing to start a charity to raise awareness and funds to help those with VACTERL, Stephenie and Kahl admit "it's baby steps" and likely a few years away.
However, they have started a GoFundMe page, gofund.me/dce307db, to start this journey.
One day, they would love to get to a point where, like the 40-Hour Famine, people wear a four-finger glove for a day to gain understanding of what Tommy will go through every day of his life.
The duo praised West Gippsland Hospital for its immediate care, Royal Children's Hospital and their "special breed" of staff for their exceptional work as well as the Community of Yarragon Good Friday Appeal for its amazing fundraising.