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Baby Hunter’s odyssey

Infant son of Canyon High School sweethearts struggles with mysterious medical issues

Posted: November 12, 2009 8:57 p.m.
Updated: November 13, 2009 4:55 a.m.

Hunter Knott was originally diagnosed with cytomegalovirus, pneumocystis pneumonia and a staph infection in his lungs and now awaits further testing for a suspected immune deficiency.

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Sept. 23 was a typical day at home for Jason and Deanna Knott and their 2-month-old son, Hunter.

Hunter hung out with his mom as she worked from their home, while his father worked his usual shift as an information technology manager for a landscape construction firm.

The Canyon High School sweethearts married in 2003 but waited to start a family. Jason Knott had obligations with the U.S. Marines, including a tour in Iraq in 2006. Exactly six years after their wedding, the Knotts were thrilled to welcome their first son into the world and settled in Mission Viejo.

That September evening, Deanna Knott laid her son down so that she could change him for bed.

As she put on his pajamas, she noticed Hunter’s chest was caving in slightly.

It didn’t seem to bother little Hunter, though. As usual, he was calm and mellow.

Deanna Knott finished changing him and put him to sleep.

At four-thirty a.m., Deanna Knott woke up to feed her hungry son. Halfway through nursing, Hunter threw up all over his mom.

This wasn’t his normal spit up.

“I freaked out,” Deanna Knott said. She set up an appointment with her pediatrician the next day.

In the morning, Deanna noticed soft grunting noises coming from Hunter as he breathed.

“I could tell that something was off,” she said.

Hunter’s pediatrician tested his oxygen levels and they were lower than where they should have been.

Afraid that Hunter would grow exhausted from breathing and just give up, the pediatrician called ahead and sent Hunter and his mom to the emergency room.

“Hearing that your baby is having a hard time breathing is the scariest thing,” Deanna Knott said. “I was terrified.”

At the same time, Deanna Knott threw herself into supermom mode. She got in her car with one thing on her mind: get to the E.R. and do anything necessary to take care of her baby boy.

Hunter ended up staying at the Pediatric Intensive Care Unit at Mission Hospital in Mission Viejo for a week and a half, Deanna Knott said.

Doctors diagnosed Hunter with cytomegalovirus (CMV), pneumocystis pneumonia and a staph infection in his lungs.

So began the Knotts’ medical journey, which Deanna Knott chronicled in her online blog, originally launched to document the couple’s transition into parenthood.

Concerned grandmother Kim Walls of Canyon Country, who owns and operates an eBay business from her home, moved in with her son and daughter-in-law for five weeks to help with Hunter’s care and offer moral support.

“It’s family. I didn’t want them to be alone. They’re young with their first baby,” Walls said. “He’s my first grandson. It was horrific when he became sick. You want the best for them.”

‘One Day at a Time’

Deanna Knott soon became adept at medical terminology, explaining on her blog the various procedures endured by young Hunter, such as receiving a broviac catheter in his chest as an alternative to being poked by needles for blood tests and IVs.

The broviac catheter was also helpful because Hunter needed monthly treatments to boost his immune system, Knott wrote.

Hooked up to a ventilator, the medical staff decided it would be best to transfer Hunter to the pediatric intensive care unit at Children’s Hospital in Orange County because Hunter needed a better ventilator, in addition to access to specialists regarding his conditions.

After three days, Hunter’s lungs improved enough to be taken off the ventilator.

Babies who get pneumocystis pneumonia usually have an immune deficiency, so the doctors decided to test Hunter to see if he was one of them.

The test came back positive.

This “basically makes him more susceptible to infections of all types,” Deanna Knott said. It would make “him sicker than a normal kid and would cause him to stay sick longer.”

But the doctors are still testing to find an exact diagnosis.

“We are officially in wait mode,” Deanna Knott said. “We are waiting for the type of immune deficiency Hunter has.”

The Knotts and their family and friends are trying to take things as they come.

“Literally — one day at the time,” Deanna Knott said. It’s “the mantra that we live by.”

A long road ahead
Hunter has returned home from the hospital and is undergoing more testing.

It has been determined that little Hunter is in need of a stem cell or bone marrow transplant, as Deanna Knott explained.

“We all have an immune system and we have T cells and B cells,” she said. “When you get sick, these are the guys that go out and fight out the infection. Hunter’s T cells are few and far between and the ones he does have don’t work very well — as well as everyone’s do.”

He also has less than most, she said.

It’s possible that Hunter’s condition was inherited, as Kevin Gadd, Deanna Knott’s father, illustrated.

“Deanna suffered from immune deficiency when she was young, too,” Gadd said in a telephone interview from Idaho, where he relocated to from Canyon Country last summer.

“They (doctors) never diagnosed her as a little girl, though. A lot of her problems she eventually grew out of,” Gadd continued.

The saying “patience is a virtue” is something the whole family is endeavoring to practice, according to Gadd, as they have anticipated a conclusive diagnosis for more than two weeks.

“The frustrating part of all this is the waiting,” Gadd said.

If the doctors come back with negative results to what they were testing for, “then they need to do more specific tests,” Gadd said.

Gadd also acknowledged the heavy boulder of financial stress weighing in on the shoulders of his daughter and son-in-law — as if the young couple need anything more to worry about.

“Basically, Hunter’s insurance has a million dollar cap on it,” Gadd said. “He’s probably spent half of that already.”

Hunter still has to go through the transplant procedure, which according to doctors will take at least 100 days, he said.

However, some good news has shed its light into the lives of the Knott family: Hunter was recently matched with two potential bone marrow or stem cell donors.

(The doctors tested Deanna and Jason Knott to see if they would match for their son, but the results returned negative).

“Once we get a diagnosis, we’ll rock-n-roll into the transplant world,” Deanna Knott said. “We know that’s the direction we are headed. It all depends on the diagnosis.”

In the meantime, the Knotts have their hands full with weekly hospital visits and monthly treatments.

“Trying to keep Hunter healthy until then is our main goal right now,” Deanna Knott said.

To follow Hunter’s progress or to donate for his medical expenses, visit Checks can be made payable to Hunter Knott c/o Deanna Knott and sent to P.O. Box 183, Orange, CA 92856-0183.


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