For much of Judah’s first year of life, all he’s known is the walls of a hospital far from home, but thanks to a unique outreach training program he is now one step, and 500 kilometres, closer to home.
Judah was born with Coffin Sirris Syndrome, an extremely rare genetic condition known to affect about 80 people in Australia. The condition causes developmental, global and intellectual delay among other complications.
For Judah, it has resulted in severe glaucoma, hearing loss in one ear and a cleft palate. He also relies on a tracheostomy and ventilator to help him breathe and requires around-the-clock care.
“At this stage we’re not sure about the degree of support Judah will need later in life because his condition is so rare, but we do know he’ll need a lifetime of developmental care”, said Judah’s mum Kirsten.
Judah spent two weeks in the intensive care unit at his local hospital in Wagga Wagga before being transferred by the Neonatal and paediatric Emergency Transport Service (NETS) to Sydney Children’s Hospital, Randwick (SCH) for specialist care. He then spent another 11 weeks in the Children’s Intensive Care Unit at SCH, followed by six months on C2 South as his multidisciplinary team worked with Judah and his family on managing his condition and his recovery.
“During our extended time at Randwick, the specialists became part of our family. They each manage their own piece of the puzzle and together make sure his care happens in a way that’s not going to impact Judah too much but is going to give him the best quality of life possible,” Kirsten said.
After 10 months in hospital, Judah's condition had stabilised but while the complexity of his condition was the reason for his lengthy recovery, it was his tracheostomy preventing him going home.
Tracheostomy care for children with complex airways, like Judah, is both multidisciplinary and highly specialised, and often provided in a paediatric healthcare setting due to the complexity of care involved. For Judah, this was six hours from where he lives.
But, thanks to a unique outreach training program established at SCH, called the Complex Discharge Collaboration Program for Long Term Tracheostomy Ventilation (LTV) Kids and Families, Judah’s care team were able to travel out to Wagga Wagga and Narrandera in the Murrumbidgee Local Health District (MLHD) to upskill teams in this specialty care closer to his home.
Over a week-long period, Beckie Petulla, Clinical Nurse Consultant in Paediatric Complex Artificial Airways and Base of Skull, and Bella De Fina, Clinical Nurse Educator, trained over 150 healthcare professionals and community members, helping to make Judah’s transfer to his local hospital possible.
“It was so heartwarming to see how many people came to support Judah and his family. It wasn’t just nurses - it was carers, paramedics, doctors, clinicians that don’t usually work with children, family members, friends and community members who came because they were willing to learn and wanting to help a family who required their assistance,” said Bella.
“Being able to upskill regional areas provides a quality of life for babies like Judah that has never previously been possible, so they can be closer to home and surrounded by their network. It also empowers the nurses, doctors, and paramedics in that area.”
For families like Judah’s living in regional NSW, having local care teams trained means they can be confident in living close to home, knowing help is available nearby in the case of an emergency. This is crucial for most children living with a tracheostomy, who are dependent on the tube as their primary airway.
There are now plans to transition Judah home with the support of overnight care workers and surrounded by family, friends, carers and the local community, Kirsten and Jaxon are embracing the move home with open arms.
“We have a huge sense of community at home and are very embedded in the community. Being able to stay in our hometown means we’re close to our support unit and able to continue running our business, and that our three other boys can be involved in everything we’re doing with Judah.”
Judah is the fourth patient who has been able to transition back home under the outreach training program.