Coast couple struggling with unborn child's rare syndrome
HETEROTAXY syndrome are the two words an expecting couple never want to hear from their doctor.
So when Caloundra couple Jayden Farina and Laura Millett, 24 were told last week their baby girl would suffer from the rare birth defect, it broke their hearts.
Laura is due to give birth in about five weeks, but with the arrival of their bundle of joy a landslide of problems would follow.
While there are several forms of heterotaxy syndrome, most cases involve the abnormal arrangement of organs; for example, the heart, stomach, liver or intestines are not where they are supposed to be in the body.
Jayden and Laura still don't have clear answers as to what their daughter's condition will be because there's no way of knowing for sure until she is born.
This means as soon as she is out of the womb, doctors will have to operate on her.
However, several scans revealed the unborn child would potentially suffer from left atrial isomerism; a dis-configuration of the heart where instead of having a left and a right chamber to receive, oxygenate and distribute blood throughout the body, the child would have two left chambers.
Scans also showed the child also had 'obstructions' between her oesophagus and her stomach, meaning she cannot process any fluid in her body.
This has caused health issues for Laura who now has a build-up of amniotic fluid that her child cannot drink.
The fluid has built up in Laura's womb - twice she had had to have the fluid drained.
The condition has caused Laura to go into labour several times, but doctors have to keep putting it off until the correct due date, worried if the baby girl is born too early she would not be strong enough for the immediate surgery.
"They need her to be a big as possible so she has a stronger chance of recovery from the surgery," Jayden said.
The couple told The Daily their lives had become 'overwhelming'.
"This is not what you expect having a child is like," Jayden said.
"The only thing you want is to have a healthy little family; but this, you can't prepare for."
The couple still struggle to come to terms with their situation, both now unemployed and living in Brisbane at the Ronald McDonald house.
Jayden is a carpenter by trade but had to give up all of his contract work and Laura was working in childcare for seven years.
The pair now have no source of income and are living off the small amount of savings in their bank accounts.
"There's not much," Jayden said.
"I am now Laura's full-time carer and I need to be here if she starts having contractions so we can go straight to the hospital.
"We are on alert all the time, it's exhausting."
Jayden's brother Justin created a Go Fund Me Page to help their pair financially.
"To be honest we are in a constant mental battle," Jayden said.
"We don't know what is going to happen to us, our child, it's a constant thing we think about."
The page had raised $1700 on March 2.