A very strong little girl

Braylee is an energetic 18-month old girl who loves to play with her toys and family members. As a result of Down syndrome, Braylee has problems with her heart and hearing. Photo by Derrick Knutson

By Derrick Knutson—

Braylee Ness is only 18 months old, but she has already been through more dire situations than most people face in a lifetime.

Glance at her and she responds with a smile and a high-pitched squeak of enjoyment.

She crawls around her family’s home in Harris, playing with an assortment of brightly colored toys, and occasionally reaches her hands out to family members as if to say, “I’m ready to be picked up now.”

Upon meeting her, most people wouldn’t know she’s almost died on multiple occasions and is constantly facing an uphill battle when it comes to her health.

Braylee was born Sept. 2, and it didn’t take doctors long to notice something was amiss with her.

“She was born at about 2 p.m. and at about 7 or 8 p.m., a nurse came into my hospital room and told me she thought Braylee might have Down syndrome,” Braylee’s mother, Tina, said.

The nurse told her that with Down syndrome, there’s about a 45-percent chance her daughter could have heart problems.

In Braylee’s case, those heart problems turned out to be extensive.

Just days after she was born, Braylee went into cardiac arrest and had to be resuscitated and then pumped full of medication to keep her alive.

That treatment righted the ship for a short time, but when Tina brought Braylee in for a routine doctor’s appointment about two weeks after she was born, her heart began to fail for a second time.

She was airlifted to the University of Minnesota Neonatal Intensive Care Unit, and for nearly the next two months, Braylee lived in a hospital room with her family by her side.

Doctors knew she needed heart surgery in order to survive, but wanted to wait until she was four to six months old to perform the operation because her chances of survival would increase with age.

However, doctors made the decision she’d need surgery before that time because her heart was having too much trouble distributing oxygen throughout her tiny, less-than-nine-pound body.

“Nov. 15 of 2010 was heart day,” Tina said.

Tina’s 16-year-old daughter, Allysha, added, “They had it written on the board in the hospital, ‘Time to fix a little girl’s broken heart.’”

The surgery to fix one of Braylee’s heart valves was a success, but there have been numerous complications since the operation. One night, her parents went to check on her and she had turned blue. She was rushed to the hospital with a 104-degree fever that was the result of an infection.

This past November, Braylee contracted pneumonia, which led to another hospital stay.

Braylee had another high fever the second week of February and had to be hospitalized for a third time since her heart surgery. “She ended up in the hospital again for five days,” Tina said. “They gave her a spinal tap, and she was so sick she slept through it.”

Braylee and family. Photo submitted

Making strides

Despite the hardships she has faced, Braylee is making progress at an incredible level, her early childhood special education teacher, Sara Griesmann, said.

Some Down syndrome children don’t speak for years and end up walking anywhere from age 2 to 7, but Braylee intones short words and seems to be not far away from taking her first steps.

Griesmann credits her progress to the support Braylee gets from family, friends and doctors.

“Braylee is a very strong little girl,” she said. “With everything Braylee has been through, it’s pretty incredible how far she has come.”

A financial drain 

Braylee’s battle to stay healthy has had an emotional and financial impact on her family.

The family has a $10,000 health insurance deductible, which it reached last year and already hit this year as well.

Subsequently, Tina and her husband Tony are struggling to pay medical bills.

In order to help the Nesses, family and friends are organizing a benefit at Lent Town Hall, March 24, 4 to 8 p.m.

The cost is $10 per person. Children age 10 and under can attend for free.

A band will perform 6 to 10 p.m., and there will be a silent auction and games for kids and adults.

A fund for Braylee has also been set up at First State Bank of Wyoming. Those who would like to donate to the fund can make checks out to “Benefit Account for Braylee Ness.”

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