Eli Peter Northey was full term and a healthy 4kg when he was born on the 19th of August 2019. However, within minutes of his birth, we realised something was catastrophically wrong: Eli was not breathing.
He had to be resuscitated and was transferred to the neonatal intensive care unit (NICU) at the Royal Hospital for Women at Randwick; an intensive care unit specialising in the care of critically ill newborn infants.
Over the following hours, Baby Eli’s health deteriorated. He was ventilated and put in a coma.
‘We were told that he may not make it. Heartbroken, we rushed to get Eli baptised as a Catholic and braced ourselves for the worst.’ Eli’s mum Jenny
Eli was diagnosed as having vocal cord palsy and laringomalacia and underwent a surgical procedure called a Supraglottoplasty at eight days old.
In the weeks that followed, Eli simply could not gain weight, nor could he be weaned off high flow oxygen.
‘We were absolutely devastated at Eli’s diagnosis, but we are so proud of him fighting so hard.’ Eli's dad, Peter
When he was only five weeks old, the decision was made to perform a tracheostomy; a surgical procedure to cut an opening into his trachea (windpipe) so a tube could be inserted into the opening to assist breathing. During the surgery, doctors found a lump to the left side of Eli’s neck.
‘During the surgery, we were asked for our consent to aspirate the lump to remove a sample of cells for testing. Just over a week later, we were told our beautiful newborn had cancer. Eli was diagnosed with neuroblastoma.’ Eli’s mum Jenny
‘We were in total disbelief and were so devastated. Our three other children didn’t understand.’ Eli’s mum Jenny
Eli’s tumour grew rapidly. His first round of chemotherapy was at six weeks old. Unfortunately, it didn’t do much to shrink the tumour.
His second round of chemotherapy was in November. He was incredibly unwell.
After a few weeks Eli underwent an ultrasound and an MIBG; a nuclear medicine scan involving an injection of a radioactive medication. We were relieved that the tumour was non active and had shrunk considerably.
‘In a way the tracheostomy was a blessing in disguise. Eli’s now almost 10 months old and so far, the tumour has not changed since November.’ Eli’s mum Jenny
‘Eli has come so far, but still has a long scary road ahead of him.’ Eli's dad, Pete
