In January, Jason and I were interviewed and got to share our story about our son Tovin's beautifully created, imperfect heart with Children's. Rather than re-write it, I thought I'd share it, in full, below. I hope after reading it that you will be so moved to help support my efforts running on behalf of Children's Team Superstars this fall. As you know, running isn't exactly my thing. But I want to help the organization that has done so much for our son. Please, please consider doing the same. Whether it's $5 or $50, it all helps. Please consider donating today.
Tovin Kainz’s Chinese Zodiac sign is a tiger, a sign of strength.
Born in China with a complicated congenital heart defect, strength is a trait he has demonstrated time and again. He was 3 before he was adopted and a medical team could start repairing his heart.
“Tovin has been extremely brave and courageous throughout his life’s journey; he hasn’t let his medical condition slow him down one bit. He continues to fight and never gives up!” said his mom, Jennifer Kainz, of Tracy, Minn. “He has taught our family about being strong, both mentally and physically.”
When Jason and Jennifer Kainz were pre-approved to adopt Tovin, they were aware of his heart defect, tetralogy of fallot. Unfazed by the diagnosis, they were determined to bring Tovin home to Minnesota and get him the care he needed.
“We went into the special needs adoption program knowing that the children on this list needed not only a family but also medical help. Jason and I strongly believe that every child deserves a chance at having a healthy life. Everyone has something medically wrong with them, but our medical conditions don’t define us,” Jennifer said.
Whatever Tovin’s heart condition turned out to be, Jason and Jennifer knew that an amazing medical team was just over two hours away from their home waiting to figure out Tovin’s “beautifully created, imperfect heart,” she said. They trusted God, they said, and knew that the medical team would have the knowledge they needed to help Tovin survive this bump in his journey of life.
What Jason and Jennifer didn’t know was that Tovin’s heart condition was worse than originally expected. This sometimes happens when children with a medical condition are adopted outside the United States, said Tovin’s cardiologist, Dr. Rodrigo Rios. The diagnosis ends up being better or worse than initially thought.
After arriving in the United States, one of Tovin’s first stops was meeting Dr. Rios at Children’s Heart Clinic. There, tests revealed that Tovin’s heart was on the right (incorrect) side of his body, had L-transposition of the great vessels, had pulmonary atresia, a ventricular septal defect, non-confluent pulmonary arteries and a right aortic arch.
In other words, “he was quite sick,” Rios said. Tovin was also very blue, a symptom of his heart disease.
A child with Tovin’s condition is frequently diagnosed prior to birth, and surgery to start repairing the heart is usually performed soon after birth, Rios said. Every surgery carries risk, and the optimal time to perform it is when the patient is healthiest and strongest.
Because Tovin was older and had already been living with his condition for three years, he wasn’t as healthy as he would have been at just a few months of age.
But, Tovin is strong. He underwent his first surgery soon after arriving in the United States and quickly showed signs of major improvement, Rios said.
This fall, Tovin, 4 at the time, underwent his second surgery and was back home recovering just a few days later. It’s anticipated Tovin will have another surgery when he’s older to fully repair his heart. For now, he sees Dr. Rios every six months for check-ups.
Dr. Rios said it’s been exciting to play a role in Tovin’s care because of the drastic improvement he’s made.
“He’s a kid with such a tremendous personality that you just fall in love with him immediately,” Rios said.
Since Tovin arrived in Minnesota, which will be two years ago this month, he’s come a long way. When he was adopted at 3, his development was delayed. Tovin wasn’t able to crawl, walk or verbally communicate with his family, Jennifer said.
He took his first assisted steps at Children’s after his first heart surgery, and he has made huge strides since with the help of physical and occupational therapy. Thanks to speech therapy, he also has a full vocabulary today.
Tovin loves to be adventurous, farm with his uncle and grandpa, and play with his tractors, Legos, and trains, Jennifer said. He takes full advantage of living in rural Minnesota. He’s always on the go, and defiantly doesn’t sit idly.
“Tovin will limit himself before his heart limits him,” Dr. Rios told Tovin’s parents.
The Kainz family has found ways to stay connected to Children’s – outside of the hospital. In 2013, Tovin, his older sister Addison, 6, and his parents donned superhero capes and participated in the HeartBeat 5000. Jennifer hopes to run one of the Medtronic Twin Cities Marathon weekend events on behalf of Children’s in October, too.
Getting involved is their way of thanking Children’s for the care Tovin has gotten.
“We have so much respect for every staff member we’ve worked with at Children’s and are very thankful for the love that each team member has given to Tovin. They’re some of his biggest ‘cheerleaders’ on his road to becoming the active 4-year-old boy that he is meant to be,” Jennifer said.
