Heart warrior and brain injury survivor celebrates 1 surrounded by ‘Harley’s Crew’

Heart warrior and brain injury survivor celebrates 1 surrounded by ‘Harley’s Crew’

Harley Swanek celebrated her first birthday by smashing a cake, surrounded by family and friends at her Wood River, Nebraska, home. The day marked a milestone for the heart warrior, who, at 6 months old, was found unresponsive at daycare. “She’s here today because of her daycare provider,” said Mercedes Swanek, Harley’s mother. 

Born with an undetected, rare heart defect, Harley’s heart was twice its normal size. Emergency crews performed CPR for 35 minutes to revive her before being flown to Children’s Hospital & Medical Center for surgery. As a result, Harley suffered an anoxic brain injury, causing her to lose milestones she had previously mastered. “It’s like having a newborn again,” said Mercedes.

As an occupational therapy assistant, Mercedes and husband, Jeremy, chose Madonna for Harley’s rehabilitation. “They’re known for being the best in brain injury, spinal cord injury and strokes. So when I found out she had a brain injury, I told the doctors that she’s going to Madonna because this is the best place to be.”     

Harley arrived at Madonna’s Omaha Campus in mid-October unable to do much of anything and clearly agitated by her condition.  “She cried 24/7 and she arched her back,” recalls Mercedes. “Nothing could calm her.”

“Harley’s brain was what we call storming, where it’s unable to tell what part of her body was causing her pain,” said Dr. Sheilah Snyder, a pediatric hospitalist at Madonna’s Omaha Campus. “As a result, she cried a lot, had an increased heart rate, higher temperature and blood pressure. She had no concept of day or night and was unable to open her eyes.”

Dr. Snyder said doctors, therapists and nurses worked as a team on Harley’s medication management and keeping her comfortable, which included stretching and positioning. Mom played a huge role in soothing Harley while keeping her close to her heart and motivating her through sometimes challenging therapy. “It’s hard as a parent because you know that they have to do it, but then there’s times where you don’t want them to do it because she’s crying or it’s painful but that’s the only way she’s going to get better,” said Mercedes.

With mom, five days a week Harley’s therapy included sessions of occupational, physical, vision and speech therapies. Twice a week she also had aquatic therapy in the warm-water pool. Gradually, Harley became calm and her personality returned. She started regaining the strength and coordination to once again reach those important milestones including rolling from side-to-side, tummy time, holding her head up and reaching for objects. “It’s truly a blessing when you can watch for the second time the little things they do that you take for granted. Goals like smiling, giggling and sitting up independently. Holding her head up for sure,” said Mercedes.

Eating was another hurdle for Harley as a feeding tube had been placed in her nose, taking away her ability to suck and swallow. “We used a hand-held device called an NTrainer that has a pacifier on the end and initiates a sucking pattern when placed in her mouth,” said Rachel Stonacek, Harley’s speech-language pathologist. “While initially able to tolerate 5 millimeters of liquids, through mom’s help and daily exposure to the device, by the end she was tolerating 1 ounce of liquids and trying a variety of baby foods, trying a variety of sippy cups.” 

Harley made huge strides in her recovery in the three months at Madonna and will continue to make gains in outpatient therapy back home.  “She’s sassy and a momma’s girl, we’re working on that. Harley’s very bright and loves to laugh,” said Mercedes. We’re excited because she’s coming back to us and excited to see her blossom from there.”

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