Routine’s the key for many a newborn but it is vital – if exhausting – for Joshua Taylor and his parents Taylah Buddle and William Taylor, of Nelson Bay.
Subscribe now for unlimited access.
$0/
(min cost $0)
or signup to continue reading
Four-month-old Joshua has cystic fibrosis causing a buildup of mucus in his stomach and lungs. He’s the carrier of two mutations and requires a rigorous regime to keep on top of. This includes six doses of creon enzymes each day to help him absorb crucial nutrients and frequent stoma bag changes. But it’s the physiotherapy that’s the most difficult to administer and endure for Joshua. It involves a series of open-palmed slaps to the ribs to shake lose the mucus, so he can either cough it up or pass it in his stools. If the family can raise $15,000 they will buy a vest that will do the same work without the distress.
“Hectic is one word to describe it,” Ms Buddle said.
“The physio is like doctor-approved child abuse. Then there’s the worry ‘are we doing it right’?”
Joshua is the couple’s second son – a little brother to two-year-old, Connor.
Her pregnancy was normal and while it was necessary to undergo a Cesarean section, as with he first born, there appeared nothing wrong at first.
“He let out a little cry to let us know he was here and breathing,” Mr Taylor said.
“Ten minutes after he was here, a lovely lady from NICU [neonatal intensive care unit] spoke to me, telling me Joshua needed to go for observations as the attempted VBAC [vaginal birth after Cesarean] had left a right bleed on his head.”
Mr Taylor remained with Miss Buddle who was in and out of consciousness. Hours later, Josh was brought back to the maternity ward where he only remained for a short while.
“After having him back we noticed something wasn’t right he was yellow, vomiting, not eating, no first poo yet, and he was one very sleepy baby,” Ms Buddle said.
“Call it parents’ intuition but something wasn’t right, we had a midwife come down to keep an eye on him.
He was taken back to the NICU, which began a long journey.
After three days Josh was yet to pass a stool so they tried bowel washouts and sought answers from an ultrasound.
On the fourth day he had surgery to assess the blockage and after five hours of waiting the doctor explained that Josh had meconium ileus with the usual cause being cystic fibrosis.
“Of course the first thing you do is Google ‘CF’ and it talks about life expectancy,” Miss Buddle said.
Josh was fitted with a temporary stoma bag and underwent a series of tests that would confirm the CF diagnosis. While he caries the DNA mutation Delta-F508 he also has the rare 3528 delC.
He spent a month in hospital – even Christmas – fighting off infections with the family focused on getting home.
“But it didn’t stop, when we came home, everyday is filled with daily enzymes, four hourly, with a high-fat bottle, and stoma bag changes,” Ms Buddle said.
“Unfortunately as Joshua’s condition worsened, we decided to raise funds for a much needed special airway clearance vest that helps kids with CF for daily physio.
“This vest will help us as he grows and starts to become uncooperative, it will help us spend more time with his older brother as well, but better it will do its job and help him breathe a bit easier.”
The couple said the vests are valued at $15,000 and aren’t covered by Medicare or health insurance.
“Sadly it leaves us with no choice but to ask for help and save every penny to raise funds,” Ms Buddle said.
Despite the challenges his parents remain optimistic with every positive milestone. Joshua has even reached 6.8 kilograms.
“This diagnosis comes as a real shock when no one in your family has had it and the doctors have taken extra interest in him because it is even rarer,” Ms Buddle said.
To contribute visit their gofundme.com page, ‘Help Our Little CF Baby Josh’.
