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Family praying for infant with extremely rare disorder

By Jennifer Stagg  |  Posted Oct 18th, 2010 @ 10:10pm


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SALT LAKE CITY -- For most parents, pregnancy is a time of joy and excitement. But for the mothers and fathers who learn before their is child born that it will have several health challenges, those can be a long and frightening nine months.

This is the story of a little boy with a condition so rare he may be the only person ever to have it. No one yet knows how many struggles baby Paxton will have to overcome, but his parents say they have faith it will all work out.

Many parents believe their babies are unique, different, special. Three-month-old Paxton Norton is not only one in a million, he's one of a kind.

At just 13 weeks old, Paxton Norton has already undergone 18 medical procedures.

"He is our miracle baby and we love him so much," his father, Dave Norton, says.

When Paxton's parents, Dave and Shannon, found out they were expecting their third child, they were surprised and excited. They already have two little boys and anticipated they were having another. But at the 19-week check up, the ultrasound showed much more.

"When the doctors came in and said, ‘We need to have you speak with the geneticist,' we knew that there was going to be some challenges," Dave said.

An amniocentesis revealed their unborn child had an extremely rare chromosomal defect -- what's called a 7q deletion. It's so rare, there are fewer than 15 medically-recorded cases and none of them are quite like Paxton.

Dave and Shannon knew they were in uncharted territory, and the prognosis was grim.

"You go through a period of just mourning the loss of a healthy child and coming to accept that, ‘OK, life is going to change and it's going to be different than what we always thought our family life would be like,'" Shannon says.

Doctors could tell Paxton had some severe problems with many of his organs. No one knew if he would have physical deformities as well.


You go through a period of just mourning the loss of a healthy child and coming to accept that, ‘OK, life is going to change and it's going to be different than what we always thought our family life would be like.'

–Shannon Norton, Paxton's mother


When he was born, Paxton looked just like his two big brothers.

"He looked beautiful and perfect," Dave says.

While Paxton may look like a typical preemie, he is anything but. He has two holes in his heart, glaucoma in his eyes, a cleft palette, pulmonary hypertension, enlarged kidneys and ventricles, and a narrow airway -- which resulted in a tracheotomy.

Paxton has had 18 medical procedures in his 13 weeks of life, and there are many more to come. Every day his condition changes. Inside his tiny body is a fighter who continues to surprise his doctors.

"Most of us thought he would be on the ventilator much longer than he was, and it was just like every day we kept reducing it. And all of a sudden we took it off, and he was like, ‘Thanks, I don't need it,'" says Donald Null, NICU director at Primary Children's Medical Center and a faculty member with University Hospital.

Doctors say Paxton's progression is due in part to the great love and nurturing he receives daily from his family.

No one knows what Paxton's future will look like, as he faces challenges both physically and mentally, but his parents believe their son was born with a purpose.

"He brings out love and joy in everybody who meets him. People are drawn to him," Dave says. "Paxton is blessed with the gift of love."

When choosing his name, Shannon says she had always like the name Paxton, but it took on more significance when she learned the meaning -- Pax means peace.

Since KSL News met little Paxton in the hospital one week ago, he has had four more surgeries and has contracted pneumonia and a staph infection. His mom says it's been up and down.

E-mail: jstagg@ksl.com

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