Story by Patricia Benitez Arriaga
Beth Klipstine in a Food Lion parking lot. She’s talking to a social worker on the phone. “We have a 7-month-old boy named Dakota who is recovering from open heart surgery,” said the social worker. “Could you take him?”
The social worker knew Beth and her husband, Aaron, were looking to adopt for the first time.
Beth called Aaron who was on duty as a detention sergeant. She told him about Dakota. “I don’t want to make a decision without you,” Beth said.
“Well, let’s go see him,” Aaron replied.
As they headed to the hospital, they both expected to meet a lively, smiling baby. But now, as they hovered over Dakota’s crib, they realized he was suffering from more than open heart surgery.
Dakota’s arms were different. His tiny wrists turned in toward him almost at a 90 degree angle. He was missing both of his thumbs and eating through a feeding tube. A nasal cannula, a tube with prongs that sit inside of the nose, provided him oxygen. Dakota looked straight ahead at the hospital wall. Motionless.
His only expression was an arched eyebrow.
One of Dakota’s many physicians began explaining some of Dakota’s medical care. Aaron and Beth would have to learn how to monitor his vitals at home. Take him to follow-up appointments almost daily with multiple specialists. Feed him through his feeding port and change the feed bags every 24 hours. Vent the port when he retches. Apply dressing to his wounds. Mix formula with protein during the day feeds. Don’t mix for night feeds.
Beth and Aaron glanced at each other, eyebrows furrowed. They were overwhelmed.
“Can we please have a minute to breathe and process all of this?” Beth asked the doctors, after listening for what felt like hours.
Many NICU, Newborn Intensive Care Unit, parents have months of pregnancy and weeks of hospital stays to prepare themselves. Beth and Aaron were expected to process everything in a few hours.
They sat down at the hospital’s Chick-fil-A and ordered sandwiches. Minutes passed before they spoke.
“I don’t know if we can do this, Beth,” Aaron said.
“Yeah, I’m really worried,” she replied. “But how can we just leave him here?”
They both felt a tug in their gut, the kind of feeling that seems impossible to ignore. What if this is God’s purpose for us, they thought. To give Dakota more than anyone else would.
Dakota was born with sickle cell anemia and VACTERL, an association of vertebral, anal, cardiac, tracheo, esophageal, renal and limb differences. Social services removed Dakota from his birth mother who lacked the resources to care for his medical needs.
He was left in the NICU without anyone to advocate for him. To fight for him. To just hold him.
The doctors said Dakota would never crawl, walk or talk.
***
After spending the day at the hospital with Dakota, Beth and Aaron sat down with their daughters, Madison, 11, and Caitlyn, 9. They wanted to prepare them for their first time meeting Dakota.
“Don’t be afraid to ask us questions,” Aaron said.
“It’s a lot,” Beth said, thinking back to the image of Dakota’s limp body in the hospital crib. “We want to know what you both think.”
The next day, the girls met Dakota for the first time. When they saw him, the same thought crossed the girls’ minds: That’s my baby brother.
Beth and Aaron wondered if they were strong enough to handle the trials they’d face. They wanted more kids, but this was a lifetime commitment. And how would they manage all of the doctor’s appointments? Beth would have to quit her job at the church and become a full-time caregiver. It didn’t seem possible.
“This is something even my wife and I wouldn’t be able to take on,” Dakota’s cardiologist warned.
But then they stared at Dakota in his crib. A small fan hummed above him. Sweat dripped down his forehead. He arched an eyebrow, a glimpse of his personality buried underneath gauze and tubes.
If they didn’t take him, then who would? They had heard about all of the kids that fell through the cracks in the foster care system. Dakota could be one of them.
They couldn’t, no, wouldn’t leave Dakota. Not here. He deserved more.
“Baby, please think about this,” Cathleen Pugh Hord, Beth’s mom, said. She sat next to Beth at a table in their church.
Cathleen was afraid of what Dakota’s medical needs would do to her daughter.
“I will support you no matter what,” she added, wiping tears from her cheek. “But you’re taking on a lot here.”
Still, Beth felt that same tug in her gut. She knew God was presenting her a blessing, a deep love she could feel growing the more time she spent with Dakota.
.
Beth and Aaron brought Dakota home from the NICU on April 3, 2018.
Aaron bought Dakota a blue, button-up shirt to wear for his trip home. When they tried to pull his arms through the shirt, he squirmed and fussed. He had never worn clothes before.
The Klipstines realized that Dakota’s life so far had been defined by “nevers.” But they were determined to fight for Dakota, for the boy they knew was in there.
***
No amount of adoption or hospital training could have prepared the Klipstines for Dakota’s first month at home.
They felt like they were slowly healing his body, fragile and raw from procedures at the NICU. Beth applied a cream for burn victims to heal Dakota’s bloody bottom. She cleaned his incisions. Bathed him for the first time.
Medicaid only provided two feeding tubes per month, so Beth cleaned the feeding tubes every day, a tedious process when the tubes aren’t much wider than spaghetti.
And then there was the constant vomiting. Dakota was so dehydrated that layers of dead skin on his lips peeled off like dried Elmers glue. Beth ran the feeding tube all day long like the doctors recommended, but Dakota wouldn’t stop vomiting. Most 7-month-old babies weigh more than 17 pounds. Dakota weighed 11.
Beth gathered that Dakota had some sort of milk intolerance. She researched every possible alternative. Lactose-free formula. Hypoallergenic formula. She donated the cases and cases of formulas that Dakota couldn’t tolerate. Nothing worked.
Beth was exhausted. The girls noticed it, too.
Beth never wanted her daughters to feel like Dakota was their responsibility. During the day, she let them help if they wanted to. Madison would offer to watch Dakota while Beth took a nap. Caitlyn would hold the feeding tube while Beth inserted the formula. And at night, Beth tried her best to keep Dakota quiet, sacrificing her own sleep to make sure her girls never had to.
Fifteen minutes. That’s the most amount of time Beth got to herself every day. When Aaron returned from his night shift at 7 a.m., Beth would drive around the block. Sometimes she’d turn on K-LOVE, a Christian radio station, and zone out to the music. Other times, she wouldn’t listen to anything at all. She just sat in the silence that was now a luxury.
But Beth never doubted her decision. Dakota was her son, and she was doing what she had to do to care for him.
Cathleen would come to the house to help Beth throughout the week. The first time she cradled Dakota at Beth’s house, all of the doubts and worries she once had disappeared. Dakota was now etched in heart as her grandson. Beth had proved her wrong.
One afternoon, Beth was scrolling on Facebook when she found a group for moms of children with VACTERL. Finally, a community I can turn to, she thought.
The moms in the group recommended pureed carrots and green beans for Dakota’s vomiting. Beth bought a Vitamix blender and fed Dakota the puree through his feeding tube. And instead of feeding him constantly throughout the day, she started breaking his feeding times into breakfast, lunch and dinner.
Finally, Dakota started gaining weight.
But even with the recent change in food, he barely moved. He just stared at the ceiling. Arms laying at his sides. Limp.
Beth looked through his medicines. Ativan. Klonopin. Xanax. Methadone.
After 14 years of working as a surgical dental assistant, she understood the effects of taking these medicines, especially all at once. No wonder he’s in such a vegetative state, she thought.
“Let’s try to wean him off Ativan and Klonopin,” Beth suggested to Aaron.
The NICU doctors said Dakota would be too agitated and fussy without those medicines, but after a few days of lower doses, his eyes wandered for the first time. His toes wiggled. His arms stretched. Little signs of life.
“What have you been doing?“ one doctor asked Beth, impressed by Dakota’s improvement. To her it was obvious. She spent every minute of the day with him — attention Dakota had never had.
One night, the Klipstines sat on Beth and Aaron’s bed, gathered around Dakota. He was more alert than ever.
For the first time, Dakota turned his head and made eye contact with Aaron. Dakota studied his face with his big, brown eyes. That was enough for Aaron, a sign that their efforts were paying off.
“Good job, Dakota!” Caitlyn and Madison cheered.
Beth and Aaron smiled at each other. “We can’t wait to see the big things you do, little man,” Beth cooed.
They knew Dakota was a fighter. He only needed the right people to give him a chance to show it.
***
Beth sits on the couch, holding 8-month-old Dakota in her lap. The dogs doze off nearby, sprawled on the hardwood floor.
The leaves start shuffling outside. The dogs dart toward the back door. Bark. Bark. Bark. Beth jolts.
She looks down at Dakota, realizing he didn’t flinch at the sound of the barking. Not even a blink.
“He failed his newborn hearing test,” the doctor said when Beth brought Dakota in for a hearing test.
Dakota is deaf.
How did everyone miss this but me, she thought. The NICU doctors had forgotten, maybe even ignored, the signs.
A month later, Dakota sits in Beth’s lap at the doctor’s office. He sucks on his pinky and wears a green headband decorated with cartoon animals. Sticking out of the headband is a processor, a part of Dakota’s conductive hearing aid shaped like a torpedo magnet.
Dakota is about to hear for the first time.
All four Klipstines are crammed into the room to witness it. Beth and Aaron sit next to each other, smiling at Dakota. Madison films on her phone. Caitlyn sits next to her, leaning forward in anticipation.
The doctor turns on the hearing aid.
“Dakota,” says Beth. He looks up at her. “Do you hear me?”
His eyes widen. Pinky falls out of his mouth. Beth’s voice was the first sound he ever heard.
***
“But he needs this surgery,” Beth pleads. She’s on the phone with a Medicaid representative.
Medicaid is refusing to cover out-of-state care for Dakota’s arm-straightening surgery.
Dakota’s doctors recommended centralization, an old procedure that straightens the arm. But Beth had researched it. She knew it would stunt his growth and limit wrist movement.
There had to be another option.
Beth felt frustrated. The doctors said they had Dakota’s best interest in mind, but they didn’t fight for him the same way she did. Some of them didn’t even bother to read his medical chart before appointments. She was used to people settling for less for him.
But she wanted more for Dakota. For her son. She would have to find a better procedure on her own.
She was searching through the Facebook group of VACTERL moms when she discovered ulnarization, a new arm-straightening procedure that would offer Dakota more functionality. When she saw the before and after pictures, she couldn’t believe the results.
The issue? Only two doctors in the United States performed the surgery. They would have to travel to Baltimore, Maryland for the procedure.
But now, even after explaining the surgery to Medicaid, they refused to cover it. Refused to see what Beth saw. An opportunity for her son to have a better future.
Beth and Aaron switched him to their private insurance and paid out of pocket for his surgery.
On the day of the surgery, Aaron held Beth as she cried in the waiting room. She hated waiting during surgeries. In most situations regarding Dakota, Beth was in control. But now, she felt helpless. All she could do was pray.
Dakota came out of the surgery with both arms repaired and wrapped in pink foam.
But the success of the surgery was short-lived. Four days later, Beth’s fears came to life.
Dakota went into pulmonary hypertension, straining his heart. They would have to transfer Dakota to the hospital at UNC-Chapel Hill.
The Klipstines rushed to the car. During the five and a half hour drive to Chapel Hill, Beth’s mind raced. Is his heart going to be OK? What if all of this still isn’t enough to give him the future he deserves?
And then she turned to God. Always praying in her head so that the others wouldn’t hear her worry.
Lord, please take care of my baby boy, she prayed. Please.
***
That day of uncertainty was three years ago.
Now, 4-year-old Dakota stands in the center of the living room. Cans of Play-Doh are scattered around him like pinecones near a tree. Beth has been using them to teach Dakota the colors.
Dakota is trying to open the purple can. He holds it close to his chest, using his pinky like a thumb to pop off the lid. He takes out the Play-Doh and drops it on the ground.
He runs to the other side of the room, dragging a toy truck out from the corner. A week prior, he decorated the seat with slathers of Caitlyn’s 24-hour wear foundation. He jumps onto the truck and drives it into a cabinet full of Aaron and Beth’s China plates. The cabinet rattles. A mischievous grin flashes across his face. Beth always jokes that the cabinet won’t survive Dakota’s toddler stage.
For now, she just takes him in. Her walking, talking, rambunctious son who does all the things the doctors said he’d never do.
In between hopping off of his truck and running to pick up the Play-Doh again, Dakota knocks the side of his head on the couch. The hearing aid processor falls on the ground, letting out squeals like a swing set at a park.
Dakota crouches down and picks it up with his pinky and pointer finger.
“Need any help?” Beth says, holding out her hands. She sits on the floor, never far from Dakota’s reach.
“No,” Dakota replies, trying to twist the processor back into place. The squeals persist. He tries again.
“Mom,” Dakota says.
“Yes?” Beth says. “Can I help?”
Dakota leans his head toward her and points to the hearing aid. He still has a bald spot on his head. It’s a constant reminder of his time in the NICU. Of the months spent alone, lying still. But peach fuzz is starting to grow there.
Beth holds his cheek with one hand as she fixes the hearing aid with the other.
Dakota looks up at her, arching his eyebrow. The same expression that convinced Beth her son was really in there all along.
