Waiting Children, they’re called: the thousands of orphans around the world who have a precondition that complicates their ability to be matched to an adoptive family. Perhaps they have Down syndrome, HIV, or a cleft lip and palate. Maybe it’s cerebral palsy or fetal alcohol syndrome. Often, they are completely healthy but have grown into their teen years or are part of a sibling group, further narrowing the pool of potential adoptive parents.
My husband and I knew that we’d adopt a Waiting Child—we’re doctors, after all. We could handle it, right? Under the guidance of our adoption agency, we honed our list of what needs and disabilities we could accommodate and which would be prohibitive, especially given our limitations back then as busy, heavily indebted family medicine residents. I don’t remember the exact day that I came across Corinne’s file, and I only vaguely recall sharing her information with my husband: female, Chinese, 2½ years old, congenital heart disease, otherwise developing as expected for an institutionalized child. This was it, we decided. She’s our daughter.
The ensuing months were a blur of paperwork as the agency formally matched us to her. It felt as though we were closing on a house every single week, all while continuing our rigorous residency training and parenting our two-year-old son. “What are we thinking?” we’d ask ourselves quietly, as we lay in the dark running through our to-do lists. We couldn’t yet see the scaffolding being built around us by our Peoria community, nor could we imagine all of the amazing people that we had yet to meet who would be instrumental in our child’s wellbeing. We had just taken an incredible leap of faith, not yet understanding how perfectly we were equipped to serve this exact child, and that it could only have happened in Peoria.
Our first inkling that Peoria had our back was when we shared our plans to adopt with our residency program. As we braced to hear all of the ways that we were crazy for doing this during residency, our mentors simply said: “How can we help?” Our next supportive nudge came during a meeting with Dr. David Chen, then a pediatric cardiologist at OSF’S Congenital Heart Center. As we continued to work on adoption paperwork, he kindly agreed to meet with me to discuss our daughter’s specific heart condition and help us prepare. I remember sitting at a small table next to his office window, the sunshine warming our faces and illuminating the napkin on which he was studiously drawing a diagram of my daughter’s circulatory system. He spent at least a half hour with me between patients that day, concluding our visit with a handshake and a pause before adding, “Her life will be better because of you.” I cried the whole way home.
As we prepared to travel to China, our residency family calmly mobilized. Shifts were covered, and a maternity leave was planned — all without complaint despite the obvious challenge of two senior residents in the same class leaving for weeks at a time. We felt nothing but loved and supported by our program, which was an incredible gift during a time that was otherwise rife with anxiety and anticipation. On December 3, 2017, we met our daughter. She was 3½ by then – nearly 4 – and wildly happy. We brought her home and prepared to watch her grow. Which she did, by leaps and bounds: overcoming her fear of dogs (we have two), embracing new cuisine, and learning her first English words. From a medical standpoint, her first echocardiogram revealed that her heart was functioning well given its limitations, and she would need open heart surgery as expected within the next few years.
After graduating residency in 2018, I took a faculty position with our family medicine program and began the CAT Scholars Faculty Development program. To my great fortune, my daughter’s pediatric cardiologist Dr. Cecilia Albaro was in my cohort, as were a slew of bright and kind physicians including pediatric hospitalists and a pediatric cardiac intensivist. On one particular day, Dr. Albaro presented to the group on neurodevelopmental sequelae amongst congenital heart patients. At the same time, my husband and I were noticing some behaviors and delays at home that gave us concern about Corinne. “Was it the language barrier or something more?” we’d ask ourselves, bringing a new set of concerns to our nighttime conversations. Dr. Albaro soon referred us to the Congenital Heart Center’s new Neurodevelopment Clinic, and Corinne was one of the first patients to benefit from an entire afternoon of specialists ranging from cardiology to developmental pediatrics to neuropsychiatry to PT/OT and speech therapy. We received incredibly helpful insight, recommendations and support in preparation for her entry into the public school system. Her cheek was swabbed and genetic testing was sent off, more as a matter of course.
Weeks later, our lives changed as we learned what that simple cheek swab had revealed: an exceedingly rare mutation on chromosome 8q24.3 leading to a barely-published, poorly understood condition called Verheij syndrome. What literature existed on the topic described children with intellectual disabilities, spinal cord and renal anomalies, and even seemingly inconsequential details such as a shortened pinky finger. I reached for her hands and wept as I noticed her tiny fifth fingers for the first time, which somehow made this syndrome more real than any genetic report ever could.
That initial scaffolding around our family has since become unshakeable support. Corinne now sees no less than six specialists in the UICOMP system, many of whom I have worked with professionally as well. When it came time for Corinne to undergo her open heart surgery, Dr. Albaro rounded on her in the hospital, and many of my CAT Scholar colleagues helped me prepare for our hospital stay and visited us for the 16 days that we lived in the PICU. I remain amazed at our great fortune of living and working in a medical community where we can access every single resource we need for Corinne, all delivered by bright and empathic experts, almost none of which we expected to meet when we drove home from the airport in December 2017.
I also reflect often on my gratitude for our specialty of family medicine—the critical importance of which has never been more clear than when parenting our own child with complex medical needs. Having our “home base” clinic where Corinne’s family physician can calmly and smoothly coordinate care across specialties and health systems has been essential as we all continue to learn more about a poorly understood syndrome with an uncertain prognosis. What a gift it has been to appreciate our work as family physicians through the lens of parenthood!
All this to say: Thank you, Peoria. I am so proud to have trained here, even prouder to continue to work here, and unspeakably grateful to experience the kindness, wisdom and expertise of our colleagues across multiple specialties as they serve Corinne and thousands of other patients in our region.