Children’s charity supporting neonatal care in NSW
Lily Bug Foundation supports neonatal intensive care for premature and new born babies in NSW. We established this children’s charity in memory of our daughter, Lily Grace Wykes, as we want all parents, grandparents and loved ones to have the care and support they need when a baby is ill, and for medical units to have the facilities, equipment and expertise required to offer babies the best chance of recovery. Read Lily’s story below.
Lily's Story
Children’s charity supporting neonatal care in NSW
Like most first time parents my husband Ben and I were so excited when we found out we were expecting our first child and all things seemed to be progressing as what we thought normal throughout my pregnancy, however I was suffering from polyhydramnios, a condition meaning I had too much amniotic fluid and during my 26th week of pregnancy I went into premature labour and was flown by the Royal Flying Doctors from Dubbo NSW to Sydney. Medical intervention at Royal North Shore then Westmead Hospital were able to stabilise things and hold off the labour for a further few weeks during which time I undertook various screening, scans and tests to further investigate what may have been happening with our baby. Unfortunately our doctors were not able to definitively diagnose anything until the baby arrived.
On 8th June 2009, which subsequently was my 27th birthday, during an examination it was discovered that our baby was in distress and within the hour Lily Grace Wykes was delivered by caesarean section ten weeks premature. Lily required resuscitation and was transferred to the Neonatal Intensive Care Unit at Westmead.
Lily, who we nicknamed Lily Bug, was dependant on a ventilator from birth meaning she was not able to breathe on her own. For the next 10 days Lily was treated at the Neonatal Intensive Care Unit (NICU) at Westmead Hospital where the doctors and nurses attempted to wean her from the ventilator whilst we waiting for a bed to become available at the Grace Centre for Newborn Care at the Children’s Hospital at Westmead where Lily would undergo further tests and investigations.
Being in the NICU environment is life changing. We met parents of newborn babies being transferred in from throughout the country to undergo enormous, staggering lifesaving surgery sometimes multiple surgeries when their baby was merely days old. We saw tiny premature babies born over 3 months early fighting with all their might to survive, their families, like us were hanging on begging and praying for their child to improve even the slightest amount.
Once Lily was at the Grace Centre a team of doctors, specialists and geneticists treated Lily whilst trying to identify what may be happening with her. Our lives were devastated and forever changed once we discovered that Lily was born with a rare and severe form of Costello Syndrome which was fatal. As parents we were helpless and to say this was soul destroying would be an understatement. On 13th July 2009 shortly after sunrise our precious Lily Bug passed away, she was five weeks old.
To honour our brave baby girl we wanted to give something back to the hospital, the doctors and nurses that treated her with such fierce compassion, dedication and professionalism. This was the formation of the Lily Bug Foundation. We and the rest of the Lily Bug Team are committed to continuing the work started and do all that we can to save as many babies as we can and support as many families as we can throughout their time in Neonatal Intensive Care and support those parents and families whose babies never go home.
