Joey's Journey

Joey was born with a condition called tracheal oesophageal fistula, or TOF for short. It’s a condition which is fixable by surgery and it occurs in about 1 in 4500 babies born in Australia. The condition means that his oesophagus does not connect with his stomach so he cannot be fed by mouth. He was transferred urgently by ambulance to the Mater Hospital for Women in Brisbane, which is the very best place for him.

Joey had his first surgery the day after he was born to repair the TOF. There were two goals of the surgery, the first was to repair the hole made by the fistula in his trachea or windpipe, and this was successfully done. The second goal was to investigate the possibility of connecting his oesophagus to the stomach. Unfortunately however, the surgeon found the gap too long (4cm) to connect. What this means for Joey is that he needs to grow so that his oesophagus will be longer and strong enough to be surgically connected to his stomach.

The surgeon has estimated that this growth will take about 5 months. Joey will have to remain in the Neonatal Intensive Care Unit in a crib for this entire time with 24 hour nursing care to prevent fluid being aspirated to his lungs and to feed him direct to his stomach.

In the meantime, on his third day, Joey had a second operation to create a gastrostomy, a tube surgically implanted directly into his stomach so he can be fed.

On the fourth day, Joey had a long line inserted into a major vein in his right leg, which travels all the way up into his abdomen to feed nutrition directly into his bloodstream. After a review of his gastrostomy, the surgeon also allowed his first feed of 3 mls of my expressed breast milk which we gave to him via a syringe to his tummy! Finally, after days of nothing to eat, he would have felt full for the first time.

On day five, after three consecutive days of operations, Joey had his breathing tube removed. In a moment he was breathing for himself again unassisted. He was measured and weighed and despite his ordeal he had still managed to put on 90g since birth.

On day six Joey had his first poo, a monumental milestone, as this meant his bowels were working and his feeds can now be incrementally increased and he can start to grow.

For Joey to thrive and grow, the best care he can receive is skin to skin contact with mum and dad and be fed breast milk. Christine and I will be spending as much time as is feasibly possible with Joey in the NICU and we have an amazing medical team supporting us.

We have relocated to Brisbane from Murwillumbah amidst the COVID story and as such we are currently in isolation in the hospital being escorted to and from Joey in the NICU by nursing staff.
After our quarantine stint, we will find suitable accomodation for however long it takes until Joey is ready to come home with us.

Christine and Mars will need ongoing support on Joey's Journey to Recovery. This will include medical support for Joey and much needed funds for accommodation and many other ongoing expenses to keep Christine and Mars close to Joey throughout his treatment in NICU.