As told by her parents Anne and Matthew
Born May 3, 2010
Our journey is one of hope, perseverance, sacrifice, talent and love. Lucy is an example of hope that a child born with severe CHD can receive unbelievable treatment in Australia and live a normal life. The perseverance, unselfish sacrifice and talent of care teams from social workers, nursing specialists, and world-class intensivists and surgical cardiologists made what seemed impossible, possible and then some.
The love that we have for our daughter and that our family and friends have for us that became the pillar of strength for us to draw from through those gut wrenching, traumatic, and thankfully jubilant 52 days, the first 52 days of her life.
Lucy was born in Brisbane at the Wesley Hospital on 3 May 2010 at 3.26pm in a relatively straightforward, uneventful birth to 2 very proud parents. She is our third child; we have a daughter Ruby and a son Finn. Finn is also a Heart Kid.
Within 36 hours after she was born, early in the morning May 5th, Lucy was in trouble. Wesley staff in special care of the maternity unit picked up a problem. Lucy crashed in front of us at the Wesley, just as staff from the Mater Hospital had arrived to retrieve her to their NICU for treatment. Coincidentally, not only was this all happening during Heart Week 2010, but the day Lucy crashed was also International Midwives Day.
Within hours, Lucy was post natally diagnosed at 3 days of age with a major congenital heart defect, known as hyperplastic left heart syndrome (HLHS). She also had multiple VSD’s and a fully interrupted aortic arch. Her condition represented the most serious of heart defects and we were told that the only options for Lucy were for her to go to Melbourne for open heart surgery or receive palliative care in Brisbane.
Lucy was rushed via Lear Jet to Melbourne Royal Children’s Hospital on Mother’s Day, where the amazing paediatric cardiology specialists and intensive care team of their PICU saved our daughter’s life over a harrowing 5 week period. Due to her compromised perfusion, Lucy subsequently developed necrosis of the gut, requiring long term peritoneal dialysis (“PD”). This delayed her open heart surgery, as her body was not able to cope with both the liver and kidney failure, as well as the insult of open heart surgery. Each day we hoped and prayed that this would be the day the surgeons could operate, but her gut was not able to repair or recover, because of the compromised blood flow from her “broken heart”. Finally after two weeks of PD, the cardiologists said they could wait no longer. Lucy would have to undergo the significant surgery despite her severely edemitis state (her body had blown up like a balloon full of fluid as her system tried to battle).
On the 21st May the director of cardiology “Dr Christian Brizzard” had acknowledged that today was the best physical condition that they believed they could achieve prior to OHS. That morning we said our goodbye and we wished the team all the best. Reassuring words helped to cope as we watch her wheeled away for OHS. At 3:15pm that afternoon Christian called us to say he had saved her with a bi-ventricular heart and he was quite astounded that other complications hadn’t presented throughout the surgery.
Her surgical journey is not typical of HLHS Heart Kids. She has not required the three stage Norwood procedures. Instead she has had one complex but very successful OHS that saved her heart as a bi-ventricular heart, the same as you and I. Her large VSD’s were closed and her aortic arch repaired.
Four days after surgery, Lucy’s chest was finally closed.
Over the next 3 weeks the days were long, but were thankfully progressive. Lucy’s only backward step was fluid draining into her lung cavity. Once corrected her liver and kidney function returned sooner than expected. We cheered as the team removed drips and IV lines from the 26 automated pumps with drugs and fluids that were once keeping her alive. Finally the ventilator was removed and Lucy was on her own.
Lucy was prepped for flight and on 11th June, we arrived home via air-ambulance to Mater Children’s Hospital. After final observations, Lucy was discharged from the Mater on Monday 21st June and we finally got to take her home, 52 days after she was born.
During this time, our eldest child Ruby and our middle child Finn (also a Heart Kid) stayed in Brisbane, cared for by a team of family and friends. Being separated as a family during such a stressful time compounded our anxieties. We had been removed from our support networks at a time when we needed them most and we gravitated towards families who were experiencing the same journey as us. This is when we received terrific support from Heart Kids and we vowed to do whatever we could when Lucy got better to repay the wonderful support that we received.
During our time in Melbourne, we also stayed sane by writing daily emails to friends and family back home in Brisbane. These emails went viral, with many people contacting us who were friends of friends who had heard of “Lucy’s Journey” and wanted to offer help. We even had families who were sent to Melbourne from Brisbane after us say, “hey, we heard about you from so and so in Brisbane before we came”.
Lucy’s story is remarkable and is one filled with hope. She has been through it all – heart failure, open heart surgery, long term ventilation, necrosis of the gut, kidney and liver failure, prolonged peritoneal dialysis, severe edemitis, vocal cord paralysis, morphine and midazolam withdrawal, prolonged nasogastric tube feeds.
But within just 6 months, she made a full recovery. She has fantastic cardiac function and is on NO MEDICATION. She smiles, cuddles and loves life, and she is achieving her developmental milestones.
There are so many people we would like to thank.
We are forever indebted to;
The exceptional midwifes of the Wesley Hospital who knew something was not right and started the journey of saving Lucy’s life.
The Mater Children’s Hospital cardiac team for retrieving Lucy, sending us to the right place and for managing Lucy’s life saving surgery and the completion of the post-operative recovery when we came home.
The incredible cardiology team, PICU intensivists and nurses at RCH Melbourne for saving her life. They are the most amazing human beings we have ever had the privilege of spending time with.
We were especially supported by the wonderful work of Heart Kids in Brisbane and in Melbourne, an organisation which helps families of Heart Kids to cope during such traumatic times.