'He won't live': Mum carries doomed baby to full term

"I am so glad I decided to carry my son. If I had to do it all over again, I would not do it any other way."

Macy will never forget the look of confusion that flashed across the ultrasound technician's face.  

It was the US mum's first indication that something was seriously wrong with her baby.  

As the doctor rushed into the room, the 23-year-old desperately tried not to panic, hoping she had simply misread the situation.   

But instead, the doctor explained the baby had Anencephaly which had caused a "defect in his skull and brain".  

"I replied 'well ok, so he is special needs or disabled, that is fine'," the new mum tells Kidspot.  

"He took me by the shoulder and matter-of-factly said 'the baby won't survive'.  

"I went into complete shock. I couldn't feel anything except for disbelief, confusion and anger."  

Macy and Alex couldn't wait to meet their baby. Source: Madeline Cox
Macy and Alex couldn't wait to meet their baby. Source: Madeline Cox

Macy and her partner Alex had only just started talking about starting a family when she fell pregnant.  

Despite the initial shock, the couple was overwhelmed with excitement at the thought of having their first child together.  

"I was extremely happy, nervous and filled with love," Macy says.  

"I had so many feelings of happiness and shock.  

"I kept thinking 'what will the baby be like?' 'Will I be a good mum?'  

"So from the moment I found out I was pregnant, I followed all the rules.  

"I did not know Anencephaly was something that could happen to your child."  

At first glance, their baby looked perfect. Source: Madeline Cox
At first glance, their baby looked perfect. Source: Madeline Cox

Back in the doctor's room at the 13-week ultrasound, Macy struggled to process what she was being told about her baby.   

It seemed impossible that no one could explain why her baby had developed Anencephaly.   

However, sadly this is often the case, as the extremely rare defect can be caused by a multitude of factors, including a lack of folic acid and genetic predisposition.   

The doctor explained that the shell-shocked parents now had to make the heartbreaking choice of whether they wanted to continue with the pregnancy, knowing their baby was unlikely to survive.  

"It is something so rare, I'm not sure our doctor even knew how to deal with it," Macy says.  

"I was given minimal information, a pamphlet for an abortion clinic, a hospice organisation and sent out the door to make a life-altering decision.  

"When all the while I couldn't even think of how to get up in the morning."  

Their baby has a rare brain defect. Source: Madeline Cox
Their baby has a rare brain defect. Source: Madeline Cox

At first, Macy was certain that she wanted to follow the doctor's recommendation and terminate her baby.  

Although she says it was the "hardest decision" she had ever made, it came down to the fact that she felt she simply couldn't endure nine months of physical and emotional pain.  

"I didn't want to have to answer questions about my pregnancy and have people touch my belly, all the while knowing my baby wouldn't live," she says.  

"I wanted it all to be over. I wanted to try again."  

"I made the abortion appointment, but when I found out my baby's sex I just couldn't show up for the procedure.  

"I realised he was my baby, we decided to honour that.  

"Japheth may not live - but he was ours and we were his."  

They decided their baby would be an organ donor. Source: Madeline Cox
They decided their baby would be an organ donor. Source: Madeline Cox

But Macy and Alex didn't want their son's short life to be defined by his condition.  

Instead, they were determined that their baby would make a difference in the world.  

It was then that they realised Japheth was in a unique position to help other babies.  

They decided that after his birth, Japheth's organs would be donated - helping to save the lives of countless babies currently waiting for transplants.  

"My child is so much more than a diagnosis," Macy says.  

"We wanted Japheth to be a miracle to others.  

"It was important to us that he did not pass away in vain.  

"Japheth means God multiplies - so my son will live up to his name."

Although Macy feels confident in her decision to carry her son to term - going through with the pregnancy has still been excruciating.  

With her belly now showing, she feels her heart shatter all over again each time a stranger approaches her to chat about the baby.  

"Nothing makes it hurt less," Macy says.  

"You go from thinking about what sports your baby will play, what you'll teach them, gender reveals and baby showers; to lots of doctors appointments, a lot of rage and heartbreak filled days and nights, to planning a funeral and delivery that will give you the most time with your child.  

But as hard as it has been, as Macy approaches her due date of June 26,  she knows in her heart that she made the right decision.  

"If I was given the diagnosis again I would not do it any other way," she says.  

"I am so glad I decided to carry my son.  

"It has made me and his father so much stronger as people.  

"We have got time to travel, bond and love our son from inside the womb.  

"We have taken photos and made memories with Japheth.  

"Our story has touched and inspired people.  

"Japheth will be a hero, his life - no matter how short - will bring life and love to others."

"Nothing about it is easy. No one knows what to say to you."  

This story originally appeared on Kidspot and has been republished here with permission.

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