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Wisconsin family looks for answers to newborn's medical mystery

Baby throws up often, can't extend legs
Posted at 6:30 PM, May 08, 2017
and last updated 2017-05-09 10:18:07-04

A Wisconsin family says doctors can't figure out what's wrong with their 2-month-old son James and they're hoping someone out there has an answer.

Jacob and Suzanna Griese say James was born Feb. 18 and they knew right away something wasn't right, though everything seemed normal during the pregnancy.

James has never been able to keep formula down. At first, their pediatrician said it was something that would work itself out. But on April 4, James was admitted to Children's Hospital of Wisconsin, where he's been ever since.

Suzanna Griese says they're no closer to learning what's wrong. She has spent every day at the hospital with him, where he now is being fed through a tube.

"I couldn't imagine leaving him," she said. "We worked too hard to get him here."

She says James throws up more than 40 times a day. He also has muscle contractions, a curved spine and lymphatic malformations all over his body. He also can't extend his legs and has trouble with hand movement, but that's improved thanks to therapy in the hospital.

But Suzanna says nothing doctors have suggested fits all of his symptoms.

"We're hoping somebody will see and go, 'Hey we've heard of this before,' because right now genetics is working overtime. Everybody here has really worked hard to try and connect the dots and just nothing makes sense," she said.

She said until they can get James to gain weight and keep his formula down, they can't begin to conduct tests or look into his other symptoms. Last week, she said he was doing better and gaining weight, but he then started going downhill.

Suzanna and her husband have five other children to care for, including two children with severe autism. James's condition has taken an emotional toll on everyone.

"Whatever his normal is going to be, somebody help us figure out what that normal is," Suzanna said. "[So we can] take him to live outside of a hospital room."

Suzanna said they thought they'd be able to leave the hospital this week but James's condition has worsened. They have no timeline on when they might go home.

They're currently awaiting the results of genetic testing and hope those will provide some answers. She says the doctors and nurses at Children's Hospital have put in an incredible amount of work to try and figure out what's wrong and Suzanna says she feels they are close to learning the answer.

In the meantime, the created a Facebook page to keep people updated on James' progress.

They also have a Gofundme page to assist with medical expenses.