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“Ten fingers ten toes?” A seemingly innocent question. Until the answer is, “Actually, no…”

Our story begins following our 20-week anatomy scan. “There is an apparent abnormality on the left hand with only two digits convincingly identified.” These are the exact words written in the medical report that was shared with my husband and I about our unborn baby boy. To put it simply, our baby did not appear to have developed all his fingers. I was overcome with emotions.

We were referred to a maternal fetal medicine specialist who confirmed that our son would be born with a “limb difference”, a term that I had never heard of until it applied to my baby. We had so many questions.

We apprehensively decided to accept an appointment with a genetic counsellor to explore the “why” behind our son’s hand difference. We were confronted with the possibility that there could be an underlying genetic cause for his differences and that he may have additional medical complications. I was plagued with anxiety about the unknown and worried about the safety of my baby.

As we awaited our son’s due date, I had several ultrasounds to confirm that everything else appeared to be developing as expected (it did). We met with a plastic surgeon who informed us about potential future surgeries and added an orthopaedic surgeon to our growing team of medical professionals waiting to meet Cade after his birth.

Cade Brooks Ellis was born on September 19, 2019. As expected, his little hand consisted of two small digits (we later learned that his entire left hand consists of only four of the typical 27 hand and wrist bones). What we did not expect, as it was not seen in the ultrasounds, was that his right foot was also different. It was smaller than his left, positioned upwards, and had four tiny, webbed toes. But none of that mattered. We were in love. Cade was uniquely perfect.

In the days and months that followed Cade’s birth, we saw a plethora of specialists. He underwent a full skeletal x-ray, a cranial ultrasound, a chest/abdominal ultrasound, and an echocardiogram. All besides his left hand and right foot looked typical. But when Cade’s small foot was examined by an orthopaedic specialist, we were given what felt like potentially devastating news: It was possible that our child may never walk on his foot. A typical foot contains five rays of bones. Cade’s foot contains three and a half. We would have to wait and see whether his foot would allow for independent mobility. We were told that at six months old, he would begin a series of castings and that around age one, he would undergo surgery to correct his talus bone and increase the chance that his foot would be functional. We were given several potential diagnostic labels (vertical talus, oblique talus, fibular hemimelia) but none of these descriptions fully fit Cade’s case.

At six weeks old, the results of Cade’s chromosomal microarray arrived and after a full examination, the medical geneticist informed us that the best explanation for Cade’s limb differences is not genetic, but rather, a sporadic interruption to blood flow in the early weeks of gestation. This disruption happens completely randomly and occurs in approximately 1 in 40,000 births. The diagnostic name for Cade’s hand difference is “symbrachydactyly”, however, we began lovingly referring to his little hand and foot as his “lucky fins” after learning of The Lucky Fin Project, an incredible organization devoted to celebrating individuals with limb differences (aptly titled after Nemo from Finding Nemo!).

After the initial onslaught of appointments, things settled and we got into a groove. We realized very quickly that missing fingers and toes changed our day-to-day life essentially zero and instead, our energy went into navigating other post-partum challenges such as breastfeeding difficulties, short naps, constipation issues, and eczema. But when Cade was six months old, two things happened that changed everything: 1) The pandemic began and all interventions were brought to a halt. Cade’s castings were cancelled. We lost our ongoing OT and PT support. I constantly battled with the notion that we (and the healthcare system) were failing my son. And 2) We introduced Cade to solids… and then we watched our sweet boy experience allergic reaction after allergic reaction. It was terrifying. We were immediately sent to a pediatric allergist who confirmed Cade’s food allergies to dairy, eggs, peanuts, some tree nuts, and sesame.

Suddenly Cade’s limb differences felt “back burner”. We were terrified and faced with navigating an entirely new challenge: Keeping our child safe, fed, and healthy, with seemingly very few options. At this point, I had shifted to exclusive pumping and despite my mental health plummeting, the discovery of Cade’s food allergies forced me to keep pumping until he was fourteen months old. Cade rejected all milk-alternative formulas. When my milk supply couldn’t keep up, an incredible community of woman including friends, cousins, acquaintances, and complete strangers, wrapped around me and donated their breast milk to continue to keep Cade fed. I will never forget the kindness of these women. It truly takes a village.

As Cade grew, we adjusted to our new lifestyle, and what was once daunting and unimaginable simply became our everyday life. In regard to Cade’s hand differences, we very quickly realized that “ten fingers are overrated” (a popular hashtag in the “lucky fin” community). He reached milestone after milestone, and he taught us that there is more than one way to do things. Cade can always be seen carrying one Hotwheels Jeep (yes, Jeep specifically!) with his big hand and a second tucked against his tummy with his little hand …because he always needs two! Have we had to learn how to navigate questions from Cade’s peers? Yes. Is it difficult and emotional sometimes? Yes. But it’s okay to be different and I hope that by being able to confidently address other’s curiosity myself, Cade will learn to do the same and maintain confidence and a healthy self-image as he grows up.

In regard to Cade’s foot, at fourteen months old, on Christmas day, we were given the best gift of all: Cade took his first unassisted steps. With zero prior intervention. The delay of Cade’s castings/surgery felt like a miracle. He didn’t need them after all. Nowadays, he walks, runs, jumps, climbs, and “zooms”! He wears a small insert in his little shoe to make up for his leg length discrepancy and shoe shopping is a bit of an expensive ordeal given that he wears two different sizes, but for now, that is it. Will there be challenges in his future? Very possible. We continue to track the discrepancy between Cade’s leg measurements and given that his differences are congenital, his orthopaedic specialist believes that a right leg lengthening or left leg shortening procedure is likely to be something that will have to be considered in the future. But for now, I do my best not to “borrow worry” and take it one day at a time.

Cade is now three-and-a-half years old and thriving. He is incredibly smart, sensitive, and sweet. I often think to myself, ‘If I could have had a crystal ball, and gotten a glimpse into the future, I would have saved myself a world of anxiety’. There was a day when I would have done anything for my boy to have all of his fingers, toes, and bones but I see things very differently now. Cade’s body is absolutely perfect the way it is. I cannot imagine him any other way, nor would I want to.

His food allergies? If I could change those I would. Having multiple food allergies changes every aspect of life. The frustration about how unfair it feels is real. The anxiety of the possibility of a mistake and its potential dire consequences is ever looming. I am hopeful that maybe, in the future, he could grow out of some of his allergies. Only time will tell. Cade has had to learn responsibility faster than any three-year-old should. He asks, “Is this safe for me?” on a regular basis. I am truly in awe at his acceptance of his circumstance and ability to cope at such a young age.

Cade may be the one with the “lucky fins” but as his parents, his dad and I are the lucky ones. Cade truly is our a “little wonder” and I could not be more proud to be his mama.


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