A heartbroken couple was forced to travel out of state for an abortion and say they then weren't even able to hold their dead baby daughter to say goodbye to her.
Heather and Nick Maberry's daughter, Willow Rose, was diagnosed with anencephaly when Heather was 20 weeks pregnant.
The birth defect occurs when the upper parts of the neural tubes that form during pregnancy to help a baby's brain and skull develop don't close all the way, according to the Centers for Disease Control and Prevention.
When that happens, the foetal forebrain and cerebrum often don't form, and neither do parts of the skull or scalp.
There is no cure or even treatment for anencephaly, according to the CDC, and babies born with it often die shortly after birth, if the pregnancy didn't already turn into a miscarriage.
The Maberrys decided on abortion - both to end their daughter's suffering and to alleviate some of the negative symptoms Heather was experiencing during her pregnancy, such as hyperemesis, or extreme vomiting, and dangerously high blood pressure.
She told CNN that she was willing to take the risks to her own health for a live baby, but since Willow was ultimately going to die, it wasn't worth it.
There was just one problem - the state of Kentucky, where the couple resides, has an abortion ban that essentially outlaws any form of pregnancy termination. And the law doesn't allow exceptions for severe birth defects.
They opted to travel out of state, but their insurance, Kentucky Medicaid, wouldn't cover the procedure.
Induction was the other option - going into labour early to have the baby - but that would have forced them to pay tens of thousands of dollars, they said.
The couple was "furious" that their state's laws were making it so difficult to get the help they felt both Heather and Willow needed.
The Family Planning Associates Medical Group of Chicago offered to perform a dilation and evacuation for free - a procedure that doesn't leave the foetus intact.
After enduring what Heather called a "nightmare" and "the worst pain ever," it was over. The pregnancy had been terminated.
But the clinic refused to give Heather her daughter's remains, which she wanted to cremate.
All the family was left with was a blanket, some baby clothes and a stuffed elephant. They also had footprints taken of Willow at the clinic.
"We'll never know what her face looked like," Heather said. "We're grieving someone that we've never seen."
The clinic declined CNN's requests for comment.
Heather told the outlet that the couple decided to go public with their story in an attempt to persuade Kentucky legislators to revise the state's strict abortion laws.
But until they do, Heather and many other women like her might be forced to venture out of state for abortions and may suffer the same fate as Heather.
