Minnesota Teen's Recovery Leaves Family and UMN Medical Team Thankful
Matt Beal couldn’t wrap his head around it. Just days ago, he and his family were on a weekend getaway in Duluth- his 16-year-old daughter Dara was smiling, laughing, as they took a family boat ride. But now, here he was at University of Minnesota Masonic Children’s Hospital, flying in family from all over the country to say their final goodbyes. His vibrant, athletic, energetic daughter Dara on life support, and wasn’t expected to survive.
“They told us Dara had something called Wilson’s Disease. I had never even heard of that before. Apparently, there was only one cure for it: A liver transplant. And Dara couldn’t have a transplant. She wasn’t stable enough,” remembered Matt.
Wilson’s Disease is a rare genetic disorder that prevents the body from removing extra copper, causing copper to build up in the liver, brain, eyes, and other organs. Without treatment, high copper levels can cause life-threatening organ damage. At that point in August, Dara was in liver, kidney and pulmonary failure, and heart failure wasn’t far off.
“Acute liver failure is very uncommon in children, and Wilson’s Disease is even more so,” explained Srinath Chinnakotla, MD, Surgical Director of Liver Transplantation in the Department of Surgery, University of Minnesota Medical School, and transplant surgeon with University of Minnesota Health. “About 1 in 600,000 children in the US are diagnosed with Wilson’s. In Dara, it must have been present for a long time before we diagnosed her.”
Not your average flu bug
It was a Thursday in August when Dara started complaining about feeling ill. She had a temperature, but since there was a flu bug going around her parents assumed that’s all it was. Dara even had herself convinced it was just the flu, for a while. But then as the days progressed, so did the pain she was feeling and her symptoms. Walking became painful, she was constantly vomiting and she couldn’t eat.
“I felt like I was shutting down,” remembered Dara.
By Sunday night, Dara could barely function. Living in a small town in Sturgeon Lake MN, there weren’t a lot of options. They all agreed they would wait until morning.
“Monday morning, I couldn’t get Dara out of bed. She was disorientated and she couldn’t walk on her own,” remembered her mom, Tonia. “I scooped her up into my arms and carried her to our van. That’s when I saw how yellow her legs and eyes were- neon yellow. She looked at me and said ‘mom, I think I’m dying.’”
Tonia drove her to the hospital, where they took one look at her and determined she needed to be sent to University of Minnesota Masonic Children’s Hospital.
From bad to worse
“I never actually thought that was what was happening- that she was really dying,” Matt said, still in disbelief.
Tuesday, Dara’s condition continued to decline.
As the same time the team at Masonic Children’s was giving Tonia and Matt the news that Dara had Wilson’s Disease, Dara was in the operating room. She had to be placed in a medically induced coma.
“I remember one of the doctors saying buckle up—Dara is going to much worse before she gets better,” said Matt.
On Wednesday that proved to be true. The Beal’s were told Dara may not survive.
“We prayed and prayed and prayed,” said Tonia and Matt.
Then, suddenly, Dara’s vitals stabilized more than they ever had. That same night, a donor liver was found. But the odds were still not great, as Dara was still on life support. She was on 4 medications (pressors) to maintain her blood pressure, kidney failure, pulmonary failure and her heart was developing arrhythmias and beginning to fail.
Dr. Chinnakotla looked to his colleagues for help and assembled a multi-disciplinary team of experts at Masonic Children’s hospital.
“The doctors and researchers here at the University of Minnesota are extremely knowledgeable. I turned to them for help and guidance,” said Dr. Chinnakotla. “We decided on a unique route. We could take Dara into the OR and put her on complete venovenous bypass, then take the old liver out, which was causing her to be so sick, and stabilize her vitals before putting the new liver in. There was no room for error.”
Her chances of survival were ten percent. But without the transplant- zero.
Four hours earlier than expected, the surgery was complete. All steps of the surgical operation were performed at lightning speed and with great precision.
“He said it’s done, she’s alive, the liver is working!” remembered Matt.
But for Dara, it was only beginning. She had procedures in the OR every other day for the next 3 weeks. She was in the hospital for 9 weeks total.
So much to be thankful for
“It’s surreal and crazy to think about, everything she went through,” said Tonia. “She is the strongest person- such a positive force.”
“I’ve never seen such a fighter,” said Matt.
And Dara will tell you herself, she will never stop fighting.
“People would tell me, you won’t be able to do that anymore, or you can’t do that for a long time and I tell them. You’re wrong. I will be able to,” said Dara.
And she has. She learned to walk again quicker than anyone expected. As of Thanksgiving, weeks out of the hospital, and just over 2 months after transplant, she has been cleared to drive and even go back to work and cheerleading. She is determined.
“I am so grateful to the doctors, and to my parents. They knew I would want to fight. And I am never going to stop,” said Dara.
“This Thanksgiving I am thankful for my colleagues at the University of Minnesota, and I am thankful for the knowledge which allowed us to save Dara’s life,” said Dr. Chinnakotla.
Dara comes back to Masonic Children’s every few weeks for check-ups, and each time, she and her progress continues to amaze her doctors, like Dr. Chinnakotla.
“Even though my kidney function is not the best right now, I’m not worried. I’ve gotten this far. If I put my mind to it I can do anything,” said Dara,
And she has the full support of her entire medical team to support her.
“It’s amazing to see how far Dara has come in such a short time. I predict a long and happy future for her!” he said, smiling.