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HARRISONVILLE, Mo — From birth, Randi Winchel has been on a ventilator.

“She did two cries when she was born and that was all,” said her mother, Heather Winchel.

Even before birth, doctors knew Randi had a condition called congenital hypophosphatasia.  She lacks the enzyme to absorb calcium in her bones so they are paper thin.  The ribs cannot support her chest for breathing on her own.   Randi spent the first 17 months of her life in hospitals.  That included her first Christmas and first birthday.

“I stayed with her.  It was very difficult at first,” said Heather.

This fall, doctors at Children’s Mercy Hospital decided Randi could come home even though she still requires breathing support.

“We have this very intensive education process for the parents,” said Dr. Winston Manimtim, a neonatologist.

Parents learn all the aspects of ventilator care including how to change the breathing tube.   Heather says it was daunting at first, but now?

“Very, very strong confidence,” she said.

She has confidence that when a home nurse isn’t there, and that’s 15 hours of the day now, she or her husband can provide care.

The doctor says there’s strong evidence of the benefits.

“These babies actually develop in terms of their milestones, they develop much better if they are at home,” said Dr. Manimtim.

At 19 months old, Randi recently rolled over for the first time.

“Oh, it was great.  She was so proud of herself,” said her mother.

Randi’s stocking hangs next to her siblings’ as the family looks forward to her first Christmas at home.

“Watching her try to open her presents.  See if she’ll even try,” said Heather.

With a newly-approved medicine, the family hopes that Randi’s bones will strengthen, and eventually she’ll no longer need a ventilator.

Randi is one of 70 patients in Children’s Mercy’s home ventilator program. It’s one of the largest programs of its type in the country.

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