Beauty in the Unexpected

Beauty in the Unexpected: Our Life Abroad as Parents of a Child with Special Needs

KCNA2 Child with Special Needs
At the pyramids in Giza to start our eight day trip in Egypt, December 2017.

My girlfriend (now wife), Oriana, and I left to teach abroad in our mid 20s with an itch for adventure and Spanish language acquisition. We landed at Westhill Institute in Mexico City where I taught special education and history, and Oriana taught elementary. As I think many international educators might say, a few years abroad quickly turned into many more. For many reasons, international teaching was, and is, contagious. Mexico City was followed by Escola Americana do Rio de Janeiro, and as our 20s turned to 30s, we found ourselves married and expecting a child. For us, having the child in Brazil was a no-brainer; it served as the ultimate embrace of our lives abroad. Plus, after over five years overseas, run-ins with medical care and insurance had not escaped us (i.e., that time I had emergency facial surgery in Mexico or Oriana got dengue in Brazil), so we weren’t intimidated. We found a great midwife, doctor and hospital to see us through a natural birth.

After a relatively routine and uneventful pregnancy, our son, Avery Cole Horneck, was born on the evening of January 23, 2016. What an incredibly emotional and joyous 24+ hours it was to see him born. Those who have gone through childbirth can no doubt relate to our sentiments, and additionally, they can understand our terror when Avery was quickly taken away from us for exhibiting seizure-like behavior. Before we could blink, Avery was in the neonatal intensive care unit (NICU) heavily sedated and intubated to keep him breathing. Seeing our newborn so vulnerable right away was difficult to say the least. Hours of stress turned to days, and blood tests, ultrasounds and electroencephalograms (EEG’s) were performed to see what was going on. Much to our relief, all the tests came up negative; there were no conclusive signs of internal abnormalities, metabolic disorders or epilepsy. After eight days, we were given the green light to take Avery home with us!

Epilepsy Awareness
Avery in his epilepsy awareness shirt before departing for our new home in Bulgaria, August 2016.

As you might be guessing, however, Avery’s medical story does not stop there. Despite tests coming up clear, Avery continued displaying uncharacteristic behavior, and he was not sleeping well or able to breastfeed. He was prescribed different anti-epileptics, given more EEG’s and a brain MRI, and our pediatrician and pediatric neurologist stayed on speed dial. Eventually, with everything still inconclusive, our neurologist referred us to a geneticist. At three months old, Avery (and Oriana and I) had blood drawn to look for genetic abnormalities. At four months, the results came back: epileptic encephalopathy as a result of a de novo mutation of the KCNA2 potassium channel gene. In layman’s terms, Avery had severe epilepsy as a result of a random, uninherited genetic mutation, which would manifest itself as multiple severe disabilities over Avery’s lifetime. This diagnosis was, of course, a mixed blessing; we had an answer to what was going on, but it was severe and incurable.

Are not many blessings mixed, though? Sounds teacher-y, right? It is funny because as a teacher you try and provide the requisite optimism and wisdom for your students, and you preach things like “what doesn’t kill you makes you stronger,” “you are who your friends are,” and Nietzsche’s famous “he who has a why to live can bear almost any how.” However, to use another platitude, it is “easier said than done.” Well, now it was time for the preachers to become believers. And that’s really what I want this story to be about: how our time with Avery taught us to find meaning in life’s chaos, to have balanced optimism, and to lean on the people around us for support. Avery’s and our story is a positive one. Maybe it all sounds cliché, but it is true (of course, the teacher in me would also like to say that these revelations are more than just clichés, they are backed by research, but I’ll let you look it up). Experience is what gives these ideas true power anyways, so I’m hopeful that through a quick telling of Avery’s story up until now, there’s something that you connect to. Ultimately, despite the additional challenges of having a child with multiple severe disabilities and struggling with foreign languages, healthcare systems and so forth, the return of hope, joy and love from our time with Avery has been greater than any cost.

KCNA2 Therapy and Treatment
Avery and Oriana on Mother’s Day in Rio, May 2016.

One big family decision early in Avery’s life was where to go as the school year drew to a close in Brazil. To backtrack a bit, our contracts were expiring in Brazil, and while Avery was in the NICU, we were offered an opportunity at the American College of Sofia (ACS) in Bulgaria for the upcoming school year. Deciding to stay abroad despite the significant unknowns with Avery hanging over our head was difficult, but our comfort level was high after six years, and our experiences had been overwhelmingly positive. We committed to a contract where I would continue teaching high school history while also adding psychology to my repertoire of classes, and Oriana would take time away from teaching to care for Avery. Even after we received Avery’s diagnosis four months later, we stayed committed to the move to Europe. Hitting the emergency eject button was always a possibility, but we were comforted by ACS’s words of support and the actions they took to provide information on insurance and healthcare.

Another early obstacle was getting information on, and possible treatment for, Avery’s condition. We quickly found out that Avery’s mutation was extremely rare; articles mentioned less than 20 known cases, and only a few doctors around the world seemed to know about KCNA2 mutations. We threw a dart and reached out to an author of one of the KCNA2 research articles (Syrbe, et al., 2015), Dr. Holger Lerche, an experimental epileptologist from Germany. To our surprise, he responded immediately and was nice enough to Skype with us. He recommended trying a medication he was seeing have some success treating Avery’s disorder, but unfortunately, it was not approved in the U.S. for that purpose. Also importantly, our global insurance originated in the U.S., and with their notoriously inflexible health-care and insurance system, this meant two things: first, our insurance was unlikely to cover the treatment, and second, doctors would be unwilling to oversee it because of liability issues. Our new German acquaintance, however, was unbound by American restrictions, and he offered to treat Avery in Germany. With the likely prospect of paying for everything ourselves, we still decided to travel to Germany to trial the medication. If there was an opportunity to provide treatment for Avery, we were not going to miss it because of financial constraints. A proverb that my department head in Bulgaria later paraphrased for me applies here – “if a problem can be paid for, it’s not a problem, it’s only an expense.” Anyways, the decision to bear the financial burden of treatment and travel turned into a major blessing in the end. A friend of ours started a GoFundMe page for us, and needless to say, we were shocked by the outpouring of support. What shocked me in particular was that a huge majority of the money that poured in came from the students (and their families) that Oriana and I taught. To this day, Brazil and all the people that supported us both emotionally and financially hold a special place in my heart.

Overall, we spent three weeks that summer in and out of the hospital in Tubingen, Germany with Dr. Lerche and a pediatric neurologist, Dr. Markus Wolff. Avery began the trial medication and was closely monitored as the dosage was increased to a level where we all hoped to see positive results. Oriana and Avery would return to Germany over six months later for another two weeks with that medical team, but unfortunately, after a year, the treatment was discontinued due to a lack of results. Still, our time in Tubingen and our connection with the doctors was, and continues to be, productive. Avery had a tissue sample taken during our time there that went towards further research of the mutation. In addition, he was one of 24 participants in a published study with new findings regarding how variations in the mutation manifests itself in various physical conditions (Masnada et al., 2017). Our trips to Germany to trial the medication and Avery’s participation in the studies made the efforts worth it, and the support we received through all of it was life-affirming.

KCNA2 Awareness
A physical examination by Dr. Wolff during Avery’s first trip to Germany.

After Avery’s first summer and the time in Germany, we moved to Bulgaria, which provided new challenges. While we had a background in Latin languages and survived alright in Spanish and Portuguese, we had ZERO knowledge of Bulgarian and Cyrillic. Navigating services in a language we knew none of was intimidating. Additionally, we didn’t really know what to expect from healthcare in Bulgaria. As an ex-Soviet satellite state that was much smaller than Brazil (both population-wise and economically), we weren’t sure how developed the system would be to meet Avery’s needs. In the end, while Bulgaria’s medical technology never wowed us, we found the doctors and therapists to be knowledgeable and selfless. Numerous times we dialed a doctor’s personal cell phone number and were offered help regardless of the circumstance. Doctors even saw Avery free of charge on many occasions. While language was sometimes an issue, we found that there was always a will to make it work, and additionally, medical language was often universal.

Amidst everything, healthcare was, and continues to be, a big part of our life with Avery. The worldwide healthcare coverage provided by our schools was a blessing, but it required more hands-on work than we were accustomed to when we lived in the U.S. In the U.S., you give the provider your card, they figure out the charges and you wait for a bill. Using our insurance abroad, however, meant paying for all costs upfront and then submitting receipts to our insurer for reimbursement. Generally, things went smoothly, but when you have a child that needs so many services and equipment, we also ran into roadblocks. Oriana took this challenge on and became an expert in dealing with our insurance and becoming Avery’s biggest advocate. She spent hours on the phone with the insurance, collecting doctors’ letters, and challenging denials.

Despite the work with insurance, we were extremely thankful to have the worldwide coverage that we did. This allowed us to continue our passion of traveling the world with Avery without the fear of losing coverage. And travel we did! By the expiration of our two-year contract in Bulgaria, Avery had been to over thirty countries! Highlights included a World Cup game in St. Petersburg, a week in Egypt along the Nile, spring breaks in Portugal, Poland, and Ukraine, and an almost three-week road trip through the Balkans. Of course, traveling with a medically fragile infant didn’t come without hiccups. Illnesses brought us to hospitals in Egypt, Spain and Poland, Avery’s stroller broke beyond repair in Ukraine, and Avery’s difficulties with digestion meant he vomited incessantly in the least ideal situations (like on airplanes and Egyptian ruins etc.). It certainly wasn’t always easy, but it was worth it. We smiled, laughed and cried together through countless adventures.

Now, some probably think we were crazy to have embarked on so many trips with our 1-2 year old, but I think there are a number of reasons why we did it that also speak to our continued life and parenting philosophy. First, the prospect of the future’s unknown made us really approach the present as a gift. There was an idea of “if not now, then when?” It would also become increasingly difficult to travel with Avery as he got bigger, but at the moment, he was easy to carry or put in a portable car seat and stroller. Yes, Avery missed some therapies and was exposed to more germs, but we received some valuable advice from our German neurologist, Dr. Wolff, that encouraged us to not fret. He essentially said that too many parents try to force development on their child by overloading them with therapies and so on 24/7. While therapies are essential, balance is important, and Avery must be allowed to develop at his own pace. I do not say this to disparage any parents, but parenting is personal, and the balance that we struck allowed us to do what we did. Additionally, Avery seemed to enjoy traveling with us. Sure, he’s legally blind, cannot walk, and cannot talk, but he gave us plenty of feedback throughout our adventuring, and we took pleasure in talking and engaging with him regardless of how much he processed. We viewed our lives, passions, and happiness as interlinked, and by continuing to do what we enjoyed doing before Avery was born, and now involving him in it, I think it was a healthy thing for all of us. This isn’t to say that our travel habits didn’t change, but we continued adventuring to the extent that we could as a family. This idea of incorporating your children heavily into all facets of your lives is also something we gleaned from the cultures we lived amongst. Finally, as I’ve already mentioned, we were quite comfortable with healthcare and insurance, so we felt prepared for when an emergency or unexpected event might arise.

KCNA2 Beautiful Story
Watching the World Cup in St. Petersburg before moving back to the U.S., July 2018.

When the time came to decide what to do as our two-year contract expired in Bulgaria, we made the decision to move back to the U.S. You might be wondering why, after all our perseverance and positive experiences, we said goodbye to expat life, but there were a variety of reasons. Primarily, as Avery got bigger and closer to school age, our challenges became more difficult to address while abroad. We were eternal optimists, but we also had to be realistic about how Avery’s and our needs were changing. Avery would soon need specialized schooling, and we could not just pick him up and go like we had done for two years – specialized wheelchairs and other equipment would more and more become the norm. A more familiar environment of doctors, therapies and education seemed to increasingly make more sense. Additionally, after eight years away from family, now seemed like an ideal time to be closer to their love and support.

Now fast forward to today. We have been living in Oregon for over six months where Oriana teaches elementary at a local public school, and in a role reversal, I am now taking time from teaching to care for Avery. In the coming years, as we get settled, we’ll both look to return to work within the public or private school system and lay down some longer-term roots in the U.S. We have huge smiles looking back at our time abroad, and especially our time with Avery, but the same can be said about the present and the future. The adventures and optimism remain regardless of our location.

As for Avery, he turned three years old in January! He continues with numerous therapies, and we travel to Portland often to see specialists. He will soon begin early childhood special education. As far as his development, his prognosis remains the same – he is legally blind and will likely be unable to walk, talk or roll over for his lifetime. Don’t feel sorry for him, or us, though. His happiness is pure, and his feedback is a breath of fresh air.