When Lisa McNally developed a terrible itch at 28 weeks pregnant, her doctor assured her it was normal. Nothing could have been further from the truth.
Three weeks later the Melbourne mum was left devastated when a routine visit to her obstetrician revealed her unborn daughter Harlow Rose had died in utero.
"The obstetrician used the doppler to check the baby's heartbeat, but no heartbeat could be found. I then had an ultrasound which confirmed Harlow Rose had died," Ms McNally says.
"It was devastating. I just couldn't believe it as I had felt her being really active the night before."
Baby Harlow Rose was stillborn the following day, December 30 last year, after Ms McNally insisted on being induced and delivering her daughter.
Blood tests revealed the mother had been suffering from Intrahepatic Cholestassis - a serious pregnancy complication that affects a woman's liver and, if left untreated, can be fatal for unborn babies.
Harlow Rose could have survived if the condition had been diagnosed and treated with medication when Ms McNally first complained of the itch.
Ms McNally is still struggling to come to terms with the loss of Harlow Rose and is sharing her family's story in a bid to spread awareness of ICP and prevent the loss of more babies.
"The condition is not heard of very often in Australia and even many doctors don't know to look out for the symptoms," she said.
"That needs to change, because the consequences of ICP being untreated are just too serious.
"The pain of losing a baby and knowing she could have been saved by medication is just devastating."
ICP is a complication where pregnancy hormones (particularly oestrogen) affect the liver by preventing the flow of bile into the intestines. Bile usually aids with the breakdown and absorption of food after digestion, but when a women has ICP, bile and other toxins accumulate in the bloodstream.
The condition usually begins in the final trimester in the last 10 weeks of pregnancy, although it can begin earlier.
The main symptom of ICP include severe itching which is not accompanied by a rash. The itching usually occurs on the palms of the hands and the soles of the feet, but it can affect other areas of the body. It's usually worse at night. It won't cause a rash, as the itching is under the skin.
Ms McNally described her itch as "intense" and said it started on her lower legs, feet and hands and was worse during the evening.
"It was like no itch I had ever heard before," she said. "It was unbearable and was like an internal itch rather than an itch that is felt on the outside of the skin like."
Left untreated ICP leads to an increased risk of foetal distress and stillbirth.
It is thought this is because bile acids crossing the placenta could cause the it to malfunction and the baby could experience oxygen deprivation.
There is also a higher chance of the baby passing meconium (its first bowel movement) while still in the womb. This can lead to meconium aspiration, where the baby's airways are blocked when the meconium leaks into the amniotic fluid.
In Australia ICP affects less than 1 per cent of women. It is thought to be a genetic condition with women more likely to develop it if a family member, such as the mother or a sister, have also had it in their pregnancies.
Once diagnosed, doctors may prescribe ursodeoxycholic acid – this boosts liver function and diminishes the itching. However, the only way for the condition to end completely is for the woman to give birth.
For this reason pregnant women with ICP will usually deliver around 35-38 weeks of pregnancy.
Since losing Harlow Rose Ms McNally and partner Peta have become determined to raise awareness of the disease that left their family shattered.
The couple, who have eight other children between them ranging in age from 18 years to 17 months, has launched a GoFund Me account to raise money for ICP Support. They have also started a Facebook page In Memory of Harlow Rose.
"We just want all pregnant women to be aware of ICP and question whether an itch is really just a harmless pregnancy itch or something more serious," Ms McNally said.
"If you have an itch without a rash, insist on being tested for ICP with a bile acid test.
"Sometimes you will have to force the issue as some doctors don't know much about ICP themselves.
"But if it means saving the life of your baby then it is worth making the effort."
More information on ICP can be found on the ICP Support website.