THE STORY OF LILY BELLE

Lily Belle was born with congenital heart disease.  She was diagnosed with a balanced AV septal defect.  The open heart surgery to repair her ‘hole in the heart’ was expected to be required between four to eight months of age.

At twenty one days old Lily became lethargic and unresponsive.  Lily was diagnosed with a critical coarctation of the aorta and was admitted to the Pediatric Cardiac Intensive Care Unit for closed heart surgery.  The surgery was performed the next day and was a resounding success.

At three months old it became apparent that Lily could not wait any longer for her AV septal defect to be repaired.  Lily’s open heart surgery was successful and she progressed well for 36 hours before suffering a pulmonary hypertensive crisis resulting in a cardiac arrest.

Lily had CPR and was put onto a heart lung machine, she remained ventilated.  This was a terrifying experience for both the family and the staff.  Lily bravely fought back.  Her recovery was sensational, a credit to her spirit, and the skill of the awesome staff at the unit.  Seven weeks after her cardiac arrest Lily went home.  By this time she had a burgeoning fan club of the doctors, nurses and staff.

Lily suffered many complications and setbacks during her first sixteen months; she had multiple surgeries, interventions and investigations. 

At five months it was clear Lily could no longer feed by mouth and would have to be tube fed, ultimately with a GJ tube.  This was connected to a port on her stomach through which she was continuously fed with the aid of a portable pump.

At nine months old Lily required a tracheostomy as breathing had become a major chore.  The tracheostomy allowed her to breathe through a tube placed in her windpipe (trachea).  When Lily slept she had to receive pressure support and oxygen so she was hooked via the tracheostomy to a bi-pap machine.  As time progressed Lily became dependent on oxygen support during the day too.

Throughout this Lily remained irrepressible.  Her smile, her bright blue eyes, her adorable round face captured and captivated everyone who met her.

None of the hoses and pipes connected to Lily stopped her from getting around just as fast as she could. And although the tracheostomy meant Lily could not speak, or make the noises other babies do, she sure could communicate! With her hands, her face and her body she could win over even the most taciturn of folks. 

Lily was in the hospital or at a clinic during almost every week of her life.  She became well known at the hospital, everyone was continuously impressed by her strength, vitality and happy demeanor.

Lily loved playing with her big sister and her friends.  She could always be counted on to give a big smile and a flash of her brilliant blue eyes.  When asked how much she loved her Mummy, Daddy or Big Sister, she would boldly raise her hands to the sky and reach as high as she could, indicating “This much!”

Lily’s last surgeries were to replace her mitral valve, and to fit a pacemaker.  She did so well after these that her cardiac function was the best it had ever been.

In August 2006, Lily’s indomitable spirit was set free of her compromised body.  Lily’s body could not cope with what is thought to be a viral infection and after fighting extremely high temperatures she suffered her second and final cardiac arrest.

Words can not adequately express the loss we all feel.  Suffice to say she is missed immensely by her family, her friends and the medical teams at the hospital and clinics.

Please join us in honoring her memory by becoming a contributing member of Lilybugs.