Mom of baby with anencephaly: ‘He was ours and we were his.’

In the midst of the tremendous pain of learning her 13-week-old preborn baby had a condition called anencephaly – which the doctors described as “incompatible with life” – Macy was struggling to process her grief and anger when she was handed a pamphlet for an abortion clinic.

“I did not know anencephaly was something that could happen to your child,” she told Kidspot. Anencephaly is a neural tube defect where a baby develops without a portion of the brain, skull, and scalp. Babies with the condition live from a few hours to a few weeks after their birth. The CDC estimates that 3 in every 10,000 pregnancies are affected by anencephaly. There is is no cure or treatment, although women of childbearing age are encouraged to take folic acid in order to prevent neural tube defects.

Macy was reeling from the diagnosis and the shock of knowing she would lose her child for whom she already felt filled with love. “I wanted it all to be over. I wanted to try again,” she said.

READ: Michael’s brother, born with anencephaly, was a blessing – just not in the way he expected

She scheduled an abortion, but after learning she was having a boy, she couldn’t go through with it. “I realised he was my baby, we decided to honour that. Japheth may not live – but he was ours and we were his,” she said.

Macy and her partner Alex wanted more for their preborn child than what life and genetics had dealt him. “My child is so much more than a diagnosis,” she said. “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.”

As a way to try to bring good out of a sorrowful situation, and to give their child the gift of a beautiful legacy, Macy and Alex decided that after Japheth’s brief life, surrounded by the love of his parents, he could donate his organs to other sick children.

As difficult as her courageous decision is, Macy knows that choosing life is the best thing she could do for her son. “If I was given the diagnosis again I would not do it any other way,” she explained. “Japheth will be a hero, his life – no matter how short – will bring life and love to others.”

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