April 12, 2023 at 5:43 p.m.
Kirckofs reflect on son’s 10-year health journey
Ten years ago, Donovan Kirckof was a Sauk Centre newborn with a heart defect and chromosome duplication whose healthcare journey had only just begun. Now, the son of Jay and Mara Kirckof still has challenges to overcome, but he is healthy enough for normal childhood activities, and his family and everyone love his positivity and friendliness.
“As hard as so many of the times were, I know we wouldn’t change any of it,” Mara said. “We wouldn’t be the family we are if we didn’t have him.”
Jay and Mara married in 2008, and their family started with two daughters – Amari, now 14, and Kaimiah, now 12. Mara became pregnant with Donovan in 2012, and he was a textbook pregnancy until New Year’s Eve. Then, at 36 weeks, Mara began bleeding unexpectedly and was taken to CentraCare-Sauk Centre Hospital. An hour and a half into an induced labor, Mara began losing a lot of blood, and so the doctors ordered a cesarean section.
Having had two normal births, a C-section was the last thing Mara was expecting. She remembers being scared of it happening, especially when a large needle needed to be inserted into her spine for a numbing spinal block.
“When I was getting that done, they kept brushing my nerves with the needle in my back, and so I felt like I was being electrocuted,” she said. “Then, it took me a long time to go numb. You can feel movement and pressure but not pain, so I was scared I wasn’t going to be numb and they would just start.”
Donovan aspirated blood and fluid during delivery and needed help breathing, and it was then the doctors discovered a problem with his heart. Mara got to hold her child for 45 minutes before a Neonatal Intensive Care Unit team from CentraCare-St. Cloud Hospital took Donovan to St. Cloud.
He was there for a couple of hours and was diagnosed with pulmonary stenosis, a congenital heart defect that occurs due to abnormal fetal heart development and makes it harder for the pulmonary ventricle to open and permit blood flow.
Donovan was taken to the University of Minnesota which, at the time, was called Amplatz Children’s Hospital. Mara could not be with him right away because she had a spinal headache for a few days, a rare side effect from the C-section spinal block.
“I went down there on Thursday, the third or fourth day after he was born,” Mara said. “I couldn’t hold him fully because he was hooked up to all of these things and wasn’t really able to be moved right away. The day after, I got to hold him in a rocking chair, still connected to a bunch of things, so it was a big ordeal.”
At nine days old, Donovan also suffered a lung hemorrhage, which required more treatment. He came home Feb. 9, 2013, but was there for less than three weeks before he needed to be hospitalized for croup and bronchitis. He returned home March 14, the day before Amari’s birthday.
“She was going to be turning four, and I remember her wishing he would be home for her birthday,” Mara said. “That was special, that he could be home, and we could have a birthday party and not be separated like we were so many times.”
Donovan had an uncertain prognosis at the time, with the family and medical professionals keeping an eye on his development. During his NICU stay, Donovan was discovered to have a rare type of chromosome duplication; there were only about 30 known cases in the world in 2013, none of which had the same duplicated chromosome section as Donovan’s.
“We were told throughout his life, ‘He’s a mystery man,’” Mara said. “He’d have all these random things, and nobody knew why or if it was connected to the genetic disorder.”
Early on, Donovan had problems breathing and eating, and a bronchoscopy uncovered an 80% compression of his trachea by his aorta, which needed to be corrected by surgery at five months old. He continued to have medical issues, including side effects from procedures and medications. It was not until he was about 6 years old that he made it a whole year without being hospitalized.
One of Donovan’s healthiest years was 2020. He never caught COVID-19 and was never hospitalized until December for a seizure. In May of that year, the Kirckofs moved to St. Michael, and at that point, they had started researching more natural methods for treating Donovan.
“We had so many side effects and problems with the pharmaceutical stuff over the years,” Mara said. “We either didn’t see results or ended up with a side effect that wasn’t wanted. When he was diagnosed with his seizures, we were advised to go on stuff, but we wanted to try to see if we could handle it naturally. We did a lot of diet changes and found a holistic healing place here in St. Michael in 2021, and as soon as we started seeing them, he hasn’t had another seizure.”
Donovan faced developmental challenges growing up, some of which had suspected connections to the chromosome duplication. He did not walk until he was 2.5 years old, and he did not talk until he was about 4. He continues speech and occupational therapy and still has speech difficulties today, but he also communicates with a sentence-constructing program on a tablet.
“He’s smart, and I’m sure he’s so much smarter than we know,” Mara said. “He just can’t get it all out.”
Donovan’s personality, though, is more than healthy.
“He is the friendliest kid ever,” Mara said. “His favorite thing to do is open the door for everybody when we’re at church or places like that. … He becomes famous wherever he goes because he’s the doorman, smiling and saying hi to everyone who comes in.”
Donovan loves scheduled activities like school and therapy, and he also enjoys computer-related pastimes and going for rides in the car, whether or not there is a destination.
“In the summer, he likes to play outside,” Mara said. “Last summer, he surprised us by learning how to ride a bike on two wheels, which we didn’t know if he’d ever be able to do. He just taught himself one day.”
After Donovan, the Kirckofs had three more children – Kephas, 7, Via, 5, and Ravenna, 2. All of them had uncomplicated births and no unusual health problems.
Mara gets choked up when she thinks about how well Donovan is treated by his siblings, whether they are the older ones who remember his early difficulties or are the younger ones who need explanations.
“People can tell Donovan’s different,” Mara said. “His siblings never see him that way. … They don’t critique him for having to do things differently. He’s just their brother.”
As Donovan celebrates his 10th Easter, the Kirckofs are grateful to him for showing them how to love somebody and their differences and how to have greater compassion for others and their stories. They also acknowledge the role their faith had in carrying them through the hard times.
“Sticking together as a couple and family, the odds are really against you when you look at the statistics,” Mara said. “God was at the center of all it, and he gets the glory.”