From the earliest weeks of Casey’s pregnancy, the path ahead for identical twins Lucas and Bailey was uncertain. Complex and life-threatening heart complications followed, along with long hospital stays across two cities and decisions no parent expects to face.
Jamie, heart dad to Lucas and his twin Bailey, shares their story in his own words, from diagnosis and treatment through to the moments that continue to shape family life long after the hospital doors close.
Lucas’ story, as told by his father, Jamie
Lucas was diagnosed in-utero with a leaky heart. He was born prematurely in February 2023 at 27 weeks weighing only 740g and his twin brother, Bailey, weighing at 994g.
The pregnancy was very high risk. We had Monochorionic Diamniotic Twins – identical twins who share a single placenta with shared blood supply and vascular connections. This turned into a very serious and rare condition called Twin-to-twin transfusion syndrome (TTTS) affecting about 10% of pregnancies, which then turned into the very dangerous and serious condition called Twin Anemia Polycythemia Sequence (TAPS) which occurs in only in 3-5% of pregnancy’s.
We were told TAPS is known as the silent killer. Because of their early complications, their prematurity and being so small, doctors explained Lucas couldn’t have surgery and was in early stages of heart failure.
It was weight gain versus time. The doctors said that if Lucas could gain weight and get up and around 2.5kg, he could be a candidate for treatment as this would lower the risks and raise the chance of a successful surgery. Lucas was transferred to the NICU cardiac ward in Brisbane and Bailey remained in the NICU in the Gold Coast. Our two babies, 70km apart.
Lucas was around the 1kg weight in mid-March when he got put on a special weight gain diet. Unfortunately Lucas only got to 1.94kg becoming very sick and going into heart failure.
We were told to come in and say goodbye.
Both Casey and I were taken into a family room to discuss Lucas’s declining health. It was just a month after he was born but we were being told there was nothing more doctors could do to help Lucas, as he was far too small to receive any lifesaving treatment. They said to do an Aortic Valvuloplasty procedure wouldn’t work due to his femoral artery is smaller than the catheter to be used. It’s something no parent should ever hear that their child is very sick the treatment available can’t help as he is too small and fragile.
Lucas was transferred to the PICU at QLD children’s hospital where, fortunately, a specialist gave us some hope that Lucas could have his Aortic Stenosis repair by going through his neck but were concerned about the circle of willis. We were told QCH had never done this on a baby of his size through the neck, so he was the first baby being this small in Queensland to have attempted this surgery. They advised us it was a 50/50 chance of success, so it was a toss of a coin for survival.
Doctors explained: “Either Lucas will succumb to his sick heart in your arms, or we take him away and attempt to repair his heart on the operating table.”
It was the worst feeling to see him being wheeled away and you couldn’t help but feel was this the last time we see him. It was the longest time I had ever waited; it seemed like time stopped.
A few weeks later after his initial heart surgery, Lucas had another surgery this time to repair and close his patent foramen ovale (PFO); which was done successfully through a large incision in his back under his scapula. Over time Lucas spent a long time in hospital.
Lucas’s surgeries were successful, Lucas is a miracle and a fighter.
Casey and I both relied on each other for comfort and healing. Our teenage daughters play a massive role in keeping us grounded as parents. Life doesn’t stop you from being a parent when you have a cardiac baby, especially when we had Bailey, Lucas’ twin, also needing all the comfort and care as a new born.
Today, Lucas’ health is stable at 3 years old, his heart is no worse but it’s still not getting better. He still has a mild leak of the aortic valve and has been diagnosed with heart valve disease. We have been advised Lucas may need valve replacements, but they don’t know when.
He has also been diagnosed with Global Developmental Delay; a brain injury and Lucas also has a G button for feeding. He has multiple appointments weekly for physiotherapy, occupational therapy, speech therapy, paediatric appointments and currently 6 monthly cardiac appointments.
HeartKids gives us a sense of peace that miracles can happen. They also show us we are not alone and that there are other parents just like us in the same boat. I try and use my experiences during this journey to give hope to other parents that need some hope to never give up, that miracles happen.
HeartKids is deeply grateful to Jamie and Casey for trusting us with their family’s story. We also thank every family in our community who helps build understanding and create change by sharing their experiences.
If you would like to share your story, please email community@heartkids.org.au.Every day in Australia, eight babies are born with childhood-onset heart disease. This February, stand alongside heart kids and their families. Be a Sweetheart for HeartKids.
