Ava Alexander-Thomas is the little girl who almost wasn't. Scans throughout pregnancy showed no amniotic fluid and a fetus with missing organs, no facial bones and undeveloped lungs.
Three medical experts urged her mum, Toni Alexander, to terminate the pregnancy. Instead, the family researched and drew hope from similar cases. At 32 weeks, baby Ava was born with a relatively common horseshoe kidney.
Now the family want answers.
Tauranga mum Toni was told at her 16-week scan that one side of her baby's brain was growing faster than the other. A further scan showed there was no amniotic fluid around the baby.
Toni, 19, was diagnosed with PPROM - preterm premature rupture of membranes.
PPROM affects two in every 100 pregnancies. It causes the loss of amniotic fluid rich in the protein, carbohydrates, lipids and urea a growing fetus needs to survive.
"We were told if the baby did survive it would live for a short time after birth before passing away," Toni, now 21, said.
"They said there was no hope - they said 'this baby is going to die'."
The family were told scans showed no Nasal or facial bones, missing organs and undeveloped lungs. The scans missed the horse-shoe kidney.
Specialists at Waikato Hospital sent Toni away with information on the recommended termination.
But Toni ignored the advice.
Toni's mum, Janine, discovered overseas cases of healthy babies born after a PPROM diagnosis.
"I found a family in Washington who had been through the same thing and they had been given all sorts of advice on what to do to continue with the pregnancy and increase the chances of a healthy baby," Janine said.
Doctors dismissed her discoveries as unfounded, Janine said. The family asked for a second opinion and were referred to Auckland Hospital, where Toni was put on a round of steroids to develop the baby's lungs. But at 30 weeks she was again advised to have a termination.
"My daughter was bawling and the woman said: 'This is not a Woman's Weekly article, this is not going to be a miracle pregnancy, this baby is not going to survive'."
But just two weeks after being told to terminate, Toni delivered a healthy baby girl.
Apart from a horseshoe kidney, which affects one in every 400 live births, baby Ava was like any other baby. No missing Nasal bone, no missing organs and a good set of lungs.
At eight weeks' premature, Ava spent time on a ventilator, two weeks at the newborn intensive care unit and then went home.
Yesterday, as the family celebrated Ava's first birthday they resolved to do all the could to give hope to other PPROM families. The family plan to lay a formal complaint.
Waikato Hospital spokesperson Kathryn Jenkin said there could be no comment on Toni's case as an investigation was underway.
"Our first priority is to understand the patient's view of what happened so that we can fully investigate the events and respond to the patient," Jenkin said.
Janine has a set up an account to raise money for families of PPROM babies. To donate please visit website Givealittle.co.nz.