Father of son with anencephaly talks about gratitude for life

Dominic and Emily Balli were excited to find out they were expecting baby number four in January 2015. But at a routine ultrasound, they found out that their son had anencephaly, a condition in which the skull and brain do not develop properly. Most children born with anencephaly live outside of the womb for only a few moments to hours. The couple was devastated, but they chose life for little Nehemiah.

“Our hearts were broken,” explains Dominic in a video on YouTube. “We were pretty destroyed. You know, we sat there and wept.”

Before finding out his son’s diagnosis, Balli, a musician, was working on a new song with several other musicians. The song, “Come That Day,” speaks about global suffering and how one day, there will be no more pain. After the diagnosis of his unborn son, Balli realized the lyrics he penned about the suffering of the world suddenly became very personal. Dominic explains:

In January, we’ll have this little boy and he’ll be beautiful, and he’ll be born and then we’ll say goodbye to him. We won’t bring a car seat to the hospital. We won’t decorate a room…And that’s not the way it’s supposed to be.

But there’s coming a day when the enemy of death will be defeated, and the enemy of sickness and disease that was not intended to be will someday be done, and there shall be no more death. There will be no more suffering and all things will be made right. I‘m longing for that day more than ever now.


According to the Balli family GoFundMe page, Emily was induced a few weeks early because of a low platelet count. Nehemiah Leone was born on December 18, 2014 at 8 a.m. The next morning at 6:02, he took his last breath. Dominic writes:

We had 22 hours with that little lion, which was so much longer than we expected, but so much shorter than we wish we had. But we enjoyed every single second of him. He fought so hard til the end. He was so strong and was such a champ. I’m so proud of him. He struggled a lot through the night and there were some very scary, dark moments for us, but there were way more beautiful moments.

In the end, we sang to him, held him, talked with him, listened to him, smelled him, kissed him, snuggled with him, and then he peacefully took a big breath and went to Jesus. It was the worst moment of our lives and yet somehow beautiful to take our son to the feet of his maker. We love our little dude and are so thankful for his life.

Even at a time of deep despair, the choice of life gave the Balli family hope and peace. It allowed them to know their son and for their son to know them, and to be held, kissed, and loved before he departed from this world. The couple says they enjoyed every second with Nehemiah and are grateful for time with him that they never expected to have.

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