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April 08, 2013 06:09 PM

Jeren's Journey

Sioux Falls, SD

The excitement of going to the hospital to deliver your new baby is one many parents anticipate. The hope for all parents is for a happy, healthy baby. But every once in a while, healthy isn't what you get and from there, life changes for everyone involved.

For Jennifer Scheff, the first month of her son Jeren's life was like a rollercoaster.

"The emotional stress, the ups and downs of the NICU, you know. He's great. He's breathing great. The nurses talk you into going to eat, you come back in an hour and he's on oxygen, has a trumpet in his nose, has a feeding tube and an IV in his head," Scheff said.

Now, three months later, Scheff has had to take unpaid leave from her job as a teacher to put all her focus on little Jeren. He has a rare congenital disorder that causes his nasal airway to become blocked easily.

"It's a result of his bones of his nasal cavities, as well as his cheeks being too close together and not allowing easy exchange of air in the nostrils," Pediatric Ear Nose and Throat Specialist Patrick Munson said.

Because babies don't breathe through their mouths until they are more developed, a nurse made Scheff realize just how bad the disorder could be.

"One night she said, 'If something isn't done with him, he will not make it through the night,' " Scheff said.

Cleaning out Jeren's nose with an at-home suction has become a part of Scheff's daily life. She even has to clean him out sometimes as often as every 20 minutes.

"Until he learns how to breathe through his mouth, this is the same process we are going to have to go through," Scheff said.

Jeren has already had three operations to put in stents to help keep his nasal airway open.

On Monday, it is being taken out for the third time, with hopes that his airway will finally be able to stay open on its own. 

"We are scared, very, very scared. We have been down this road because if we end up with another surgery, this will be four and it's usually the same process," Scheff said.

But Dr. Munson is confident this could be the turning point and long term, he says, Jeren has a bright and clear future.

"I think in the short term, it is something we will have to watch, but in the long term as his body gets bigger his nasal passages will get bigger and as he gets bigger, he won't be as reliant on nasal breathing, but will be able to breathe orally," Munson said.

This weekend, a silent auction will be held to help the Scheff family with medical costs. Click here for more information on the fundraiser.

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