8-month-old New Zealand baby Josiah Jones was born with a heart disease that affects one in every 100 babies born in New Zealand.
He has already undergone three surgeries, the first just six days after his birth. Josiah will need more surgery once he turns three or four, including another open-heart surgery.
Josiah’s mother Connie recalled how she felt “confused” when she heard about the potential health issues of her unborn baby after her 14-week scan, in which Josiah was diagnosed with tricuspid atresia, dextro-transposition of the great arteries (d-TGA), and hypoplastic aortic arch with coarctation.
“I went to my room and just cried”.
She said, “I remember the doctors said that it is going to be a hard and bumpy ride for us… And they were not wrong”.
Despite his challenging start, his parents said baby Josiah was “still smiling all the time”.
Since his discharge from hospital three months ago, he has been feeding milk and six different medications daily through a small tube.
Connie and husband Michael Jones were waiting for Josiah’s birth at Auckland Hospital when their 3-year-old daughter, Adaline, was also admitted to paediatric intensive care unit (PICU) at Starship Hospital for type 1 diabetes.
“So, she got to go to PICU before he did, but they ended up in the same bed space coincidentally”.
Josiah was later born on 19 October at Auckland Hospital and went straight into PICU where he has since ended up eight times.
While Connie recovered from the birth, Michael “raced” around the hospital to check on his family members.
“It was busy. I tried to see everyone and give them a kiss and a cuddle. Then move to the next one and do the same thing”.
The Jones family remains optimistic about the future for their children.
“They’ve been doing well and looked after. We’re trying to be positive and keep things as normal as they can be”, Connie Jones said.
The Jones family has been helped by Heart Kids New Zealand, a charity that provides support services to young people living with a childhood heart condition and their families. Its annual Shake a Bucket fundraiser runs throughout June each year.
A spokesperson for Right To Life UK, Catherine Robinson, said: “It is wonderful to see charities such as Heart Kids New Zealand helping families to access the very best treatments for children with conditions such as Josiah’s. We wish him and his family the very best”.