The Miles family, Sienna, Riley, Elijah, Phil, Jess and Bentley, are sticking together in Melbourne while Phil recovers from his heart transplant.
“Some people quietly spend their lives giving everything to others. Phil is one of those people,” Shenae Farmer-Brooks said of her brother-in-law, Phil Miles.
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On February 9, the 42-year-old Shepparton man who runs Shepparton Animal Rescue and Rehoming with his wife, Jessica, and their kids, had a heart transplant after being plagued with cardiovascular challenges since the day he was born.
“He is the kindest, most thoughtful and genuinely caring person you could ever meet,” Shenae said.
“He is a patient and gentle dad whose four children absolutely adore him.
“He shows up for everyone, even while his own body has been failing him for his entire life.”
Phil was born with complex congenital heart disease, including situs inversus (a rare genetic congenital condition where major visceral organs in the chest and abdomen are reversed from their usual positions) and heterotaxy syndrome (where organs in the chest and abdomen are abnormally arranged or in incorrect positions) with asplenia (the absence of a functioning spleen).
Only two of his four heart chambers were functioning at birth.
“From the moment he entered the world he has been fighting to stay in it,” Shenae said.
Phil first underwent surgery at three days old to have a shunt temporarily inserted to allow him to grow before a more permanent repair.
At 18 months old, he had a central shunt fitted to bridge his aorta to his main pulmonary artery.
Then at five, he underwent the Fontan procedure, the final stage of open-heart surgery for children born with a single functional ventricle.
At 24 he had a Fontan revision to correct complications from the initial procedure.
In 2013, his pacemaker was removed due to a serious infection and, in 2015, he became critically unwell with strep pneumonia and was admitted to an intensive care unit.
The Fontan procedure can lead to heart failure over time, so, eventually Phil was placed on a heart transplant list at Melbourne’s The Alfred Hospital.
“Recently the call came that changed everything; a donor heart had become available,” Shenae said.
“Our family is deeply grateful to the donor and their family for the selfless gift that has given Phil a second chance at life.”
Phil’s unique anatomy and existing scar tissue from prior surgeries made his transplant complex, and he’s now recovering in ICU.
“He’s not out of the woods yet,” Shenae said.
“He has multiple clots in his neck and arms, he is needing insulin and he is on dialysis because his kidneys are not working at the moment.”
Also battling delirium, unstable blood pressure and dangerously high heart rates, his challenges persist.
Phil and Jessica’s four children all have autism and attention deficit hyperactivity disorder, according to Shenae.
“Routine and structure are essential for their wellbeing and their dad being critically unwell in Melbourne has been frightening and destabilising,” she said.
“Phil is their safe place.
“Being close to Phil during this stage is essential.”
At the time of his transplant, Shenae said the family was already under added stress with one of their cars and their washing machine unexpectedly breaking down.
“The repair costs created new financial pressure at an already overwhelming time,” Shenae said.
Shenae has set up a GoFundMe fundraiser for the family while they navigate their current open-ended living arrangements away from home, which are expected to continue for at least six months.
“Heart transplant recovery requires constant monitoring and can continue for weeks or even longer with no certain timeline,” she said.
“Accommodation, food, travel and daily living costs in Melbourne have already gone past $5000, and they continue to rise every week.
“The financial and emotional weight has become overwhelming.”
Phil Miles has battled with heart conditions his entire life.
Phil’s wife, Jessica, thanked everyone who had donated to and shared the fundraiser so far from his bedside in Melbourne.
“Your support has lifted a huge weight off our family and we are so grateful; it is helping us stay here while Phil continues to fight and heal,” Jessica said.
“Phil has been so brave.
“We are with him every day so he knows he is loved and supported.
“We are holding space around him until he is strong enough to return home to our kids and to the life he deserves.”
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