This is the story of “Twin A”, who at only 13 weeks in utero was diagnosed with a rare and complex heart condition. Loving parents Stephanie and David were told to prepare for the worst.
By 17 weeks, their unborn baby boy was confirmed to have truncus arteriosus, severe truncal stenosis and a ventricular septal defect (VSD- a hole in the heart). Essentially – only one large artery came from the heart which failed to separate into the usual two arteries.
Against the odds, baby Miller (1.9kgs) and his twin sister Maisie (2.2kgs) were delivered at Monash Medical Centre in August 2023.
At just four hours old, Miller was transported via PIPER with dad in tow, to The Royal Children’s Hospital where he was monitored in PICU while a plan was developed to address his heart problems. Mum and Maisie remained at Monash for several days.
“I don’t think [Maisie] really understood her little roommate wasn’t there anymore,” Stephanie said.
With his condition deteriorating rapidly, Miller underwent urgent open-heart surgery at just two days old. At his weight, his cardiologists weren’t sure he would survive the surgery.
Unfortunately, due to further unusual complications the next day, Miller went into cardiac arrest and had to be resuscitated before being placed onto a heart and lung bypass machine (life support).
“I wasn’t really in my right mind,” Stephanie said, “I was a mess the entire time and I was trying to hold myself together.”
“The decision was made to go in for exploratory surgery because they thought Miller had a bleed in his chest and during this surgery they decided to take him off life support and to let him try to do the work himself,” Stephanie said.
“A slow and uncertain couple of weeks went by and he had been showing signs of improvement to the point the doctors were a bit more positive about his recovery.”
“I got to see my son for the first time properly at five days old (I had never seen his face without anything on it) and I got to hold him for the first time at three weeks old.”
“We weren’t sure if that was going to be the only cuddle we ever got.”
After several infections and continuous fluid build-up, Miller underwent his second open heart surgery in October at nine weeks old.
His recovery was slow, but after a lot of hard work from his care team Miller was able to come off his ventilator and breathe on his own!
In February 2024, Miller got to go home for the first time.
“We showered him with love, everyone got proper cuddles for the first time. He got to actually see what his home looked like and to sit and play with toys. He really enjoyed everything that was happening,” said Stephanie.
Miller has since made significant progress in his recovery and is slowly strengthening his immune system after his long stay in hospital. “There will be back and forths but we can only go with the flow and love him to the fullest.”
“We are incredibly lucky to have great support at home to help with our other children as well as having great support within the RCH who have been able to assist and provide support for us all as well.”
“I hope he has a long, healthy and happy life.”
Marking the end of Heart Week, we thank Stephanie and David for sharing Miller’s powerful journey with us.
You can learn more about heart conditions like Miller’s through our Cardiology resources.
