Annika’s Odyssey

My daughter Annika was a healthy newborn; everything was just fine for a while. Then, when she was just 12 weeks old, she contracted adenovirus. Her older brother and two older sisters had it the week before Annika contracted it; their symptoms were very mild: pink eye, stuffy nose, cough. Annika’s case took a much different route, she went into multisystem organ failure and respiratory failure.

I remember sitting in my bedroom holding her and feeling like something wasn’t right, so I took her to our local emergency room. Her oxygen levels were only in the 80s. They stabilized her and transferred her to a hospital just outside of Cleveland. From there a day later, she was then transferred to a PICU in Cleveland. She required intubation and then ultimately ECMO, a treatment that brings oxygen into the body when the lungs can’t do it on their own. We weren’t given the impression she would recover and that was terrifying. She eventually came off of ECMO and was extubated but still required oxygen. We spent two months in the hospital with her initial illness.

For the first 2 years after her illness, her treatment was in Cleveland, at the closest pediatric hospital to our small, rural hometown. After her second birthday in Feb 2017, that team hit the wall as far as what they could do for her. We were transferred from Cleveland to Nationwide Children’s Hospital to see the Gastrointestinal (GI) Motility team for her stomach issues in early March 2017. Shortly after our transfer, due to the complexity of her medical history, numerous other teams became involved including Pulmonology; that’s when we first met Dr. Grace Paul. Thinking back to this first meeting, I vaguely remember Dr. Paul saying that the good news was Nationwide Children’s had a lung transplant team if we would ever need them.

In November 2018 Dr. Paul sent us in for our routine chest CT. We knew her lungs were bad; Annika over two years post infection was still requiring a large amount of oxygen for a child, but we didn’t think that was the most pressing issue. At the time, I was staying at the Ronald McDonald House. Dr. Paul called and asked me to come to the hospital so she could talk to me. My heart hit the floor and I felt sick: doctors never call like that to invite you in for coffee and good news!

I went to Dr. Paul’s office, and she told me that the radiologist said Annika had Bronchiolitis Obliterans (BO), and that it was progressing. We had gone as far as we could on medications and we were at a point where it was an option to meet the lung transplant team: I felt shock, disbelief—really all the emotions—in that three-minute period. Once BO progresses far enough, transplant is the final treatment option.

We met with the transplant team the following Monday and they were wonderful. They were very thorough in answering our questions and explaining the ins and outs of transplant. It’s such a great feeling when you just know someone or something clicks, and my husband and I felt that at that time.

In January 2019, Annika had her initial transplant testing. We remained inpatient for about a week while multiple tests and evaluations were performed. The team was great through all of the testing and kept us informed along the way.  In April 2019 all of the pieces finally fell into place. We weren’t quite ready to plunge into a transplant, so Annika was listed status 7 (inactive) for a double lung transplant.

For the remainder of 2019, Annika was followed very closely by pulmonary and lung transplant teams. Then 2020 happened and the world as we knew it changed, thanks to the COVID-19 global pandemic. There were some major changes with the transplant team, and we weren’t sure whether she’d be able to have her transplant at Nationwide Children’s. Nothing is scarier as a parent than being caught in the middle of a pandemic with a child who has severe respiratory illness, and not knowing what the future may hold.

In June 2020, we traveled to a hospital in Cincinnati with Annika for a transplant evaluation. It just wasn’t the right fit for us and our family. We left feeling scared and defeated. Finally in March 2021, all the pieces came together in Columbus. Annika was inpatient with an exacerbation in her lung condition. The transplant team came to see us on the floor, and we were thrilled to learn that we could go forward with listing at Nationwide Children’s. Some testing needed to be repeated, but on June 22, 2021, Annika was listed as “Active” for a Double Lung Transplant. It took less than three months to find a donor who was a perfect match. Annika received her double lung transplant on September 17, 2021.

Annika will be seven years old next month! We are anxiously awaiting getting home to her dad and siblings, and her animals. Right now, we’re waiting for the right time: we still have to get some stomach issues figured out, and she has to prove that she can gain weight without being on IV nutrition.  We look forward to her being able to become a “normal” kid more than anything! We can’t wait to see her having fun doing gymnastics, playing with her siblings, loving her dog, and riding her horse Lil’ Girl. Thanks to all of our amazing teams at Nationwide Children’s, Annika will so be experiencing life unattached to oxygen!

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My daughter Annika was a healthy newborn; everything was just fine for a while. Then, when she was just 12 weeks old, she contracted adenovirus. Her older brother and two older sisters had it the week before Annika contracted it; their symptoms were very mild: pink eye, stuffy nose, cough. Annika’s case took a much different route, she went into multisystem organ failure and respiratory failure.

I remember sitting in my bedroom holding her and feeling like something wasn’t right, so I took her to our local emergency room. Her oxygen levels were only in the 80s. They stabilized her and transferred her to a hospital just outside of Cleveland. From there a day later, she was then transferred to a PICU in Cleveland. She required intubation and then ultimately ECMO, a treatment that brings oxygen into the body when the lungs can’t do it on their own. We weren’t given the impression she would recover and that was terrifying. She eventually came off of ECMO and was extubated but still required oxygen. We spent two months in the hospital with her initial illness.

For the first 2 years after her illness, her treatment was in Cleveland, at the closest pediatric hospital to our small, rural hometown. After her second birthday in Feb 2017, that team hit the wall as far as what they could do for her. We were transferred from Cleveland to Nationwide Children’s Hospital to see the Gastrointestinal (GI) Motility team for her stomach issues in early March 2017. Shortly after our transfer, due to the complexity of her medical history, numerous other teams became involved including Pulmonology; that’s when we first met Dr. Grace Paul. Thinking back to this first meeting, I vaguely remember Dr. Paul saying that the good news was Nationwide Children’s had a lung transplant team if we would ever need them.

In November 2018 Dr. Paul sent us in for our routine chest CT. We knew her lungs were bad; Annika over two years post infection was still requiring a large amount of oxygen for a child, but we didn’t think that was the most pressing issue. At the time, I was staying at the Ronald McDonald House. Dr. Paul called and asked me to come to the hospital so she could talk to me. My heart hit the floor and I felt sick: doctors never call like that to invite you in for coffee and good news!

I went to Dr. Paul’s office, and she told me that the radiologist said Annika had Bronchiolitis Obliterans (BO), and that it was progressing. We had gone as far as we could on medications and we were at a point where it was an option to meet the lung transplant team: I felt shock, disbelief—really all the emotions—in that three-minute period. Once BO progresses far enough, transplant is the final treatment option.

We met with the transplant team the following Monday and they were wonderful. They were very thorough in answering our questions and explaining the ins and outs of transplant. It’s such a great feeling when you just know someone or something clicks, and my husband and I felt that at that time.

In January 2019, Annika had her initial transplant testing. We remained inpatient for about a week while multiple tests and evaluations were performed. The team was great through all of the testing and kept us informed along the way.  In April 2019 all of the pieces finally fell into place. We weren’t quite ready to plunge into a transplant, so Annika was listed status 7 (inactive) for a double lung transplant.

For the remainder of 2019, Annika was followed very closely by pulmonary and lung transplant teams. Then 2020 happened and the world as we knew it changed, thanks to the COVID-19 global pandemic. There were some major changes with the transplant team, and we weren’t sure whether she’d be able to have her transplant at Nationwide Children’s. Nothing is scarier as a parent than being caught in the middle of a pandemic with a child who has severe respiratory illness, and not knowing what the future may hold.

In June 2020, we traveled to a hospital in Cincinnati with Annika for a transplant evaluation. It just wasn’t the right fit for us and our family. We left feeling scared and defeated. Finally in March 2021, all the pieces came together in Columbus. Annika was inpatient with an exacerbation in her lung condition. The transplant team came to see us on the floor, and we were thrilled to learn that we could go forward with listing at Nationwide Children’s. Some testing needed to be repeated, but on June 22, 2021, Annika was listed as “Active” for a Double Lung Transplant. It took less than three months to find a donor who was a perfect match. Annika received her double lung transplant on September 17, 2021.

Annika will be seven years old next month! We are anxiously awaiting getting home to her dad and siblings, and her animals. Right now, we’re waiting for the right time: we still have to get some stomach issues figured out, and she has to prove that she can gain weight without being on IV nutrition.  We look forward to her being able to become a “normal” kid more than anything! We can’t wait to see her having fun doing gymnastics, playing with her siblings, loving her dog, and riding her horse Lil’ Girl. Thanks to all of our amazing teams at Nationwide Children’s, Annika will so be experiencing life unattached to oxygen!

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