It has been a long journey so far for Asher Patz— and he’s barely 2 months old.

He was born three months early with a congenital diaphragmatic hernia, a hole in his diaphragm where his lower organs began falling through and settling in his chest. About one in 2,500 babies are born with CDH.

Asher has a patch over his hernia and mostly uses a feeding tube. He is doing well now, and his parents, Kari and Allen, drive from Marion to Columbus several times a week to see their little guy at Nationwide Children’s Hospital. They said they hope to have him home sometime in May or June.

“We’re trying to get the word out,” Allen said. “If you talk to any parents who have lost babies due to CDH and everything, that’s their whole goal now is to raise awareness.”

The Patzes say they didn’t know much about CDH before an ultrasound revealed their son had the hernia.

“You’re in shock,” Kari said. “You’re like, ‘wait a minute, how does that happen?’”

Without the support of a CDH group called Cherubs, they say they still would be lacking a lot of information. Last week, Kari and Allen got to meet other parents and survivors of CDH in Columbus. Though they only know one other person in Marion who has a child with CDH, there are other parents in central Ohio they can talk to.

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