Will He Walk? – Our Little “CHAMP”

While I’m not hugely superstitious, the fact that Cade’s follow-up appointment with orthopedics was scheduled on a “Friday the 13th” always felt a bit ominous. Since we were made privy to the fact that Cade is missing bones in his foot, Lyndon and I knew that the treatment plan and prognosis may be different than what we were originally told when he was born.

On what was starting to feel like an all too familiar drive to the hospital, I expressed to Lyndon my anxiety about the information to come. “It’s going to go one of two ways,” he replied. “Either the treatment plan stays the same, and with casting and surgery, he will have a typically functioning foot or not…”. It was the “or not” part that was fueling my anxiety.

We arrived at Admitting and a nice woman with a heavy accent checked us in. “Ooo just a baby!” she cooed when she noticed the admitting bracelet read ‘0 years 88 days’. “Is he getting better?” she asked me. I stared at her. Had I misheard her? “Pardon me?” I asked politely. “Is he getting better?” she repeated, like it was the most obvious question in the world. I was at a complete loss for words (and that doesn’t happen often!). I looked at Lyndon. He laughed awkwardly, “Well… he can’t exactly get better…” he started. “He was born without all his fingers and toes!” I blurted. The poor admitting woman looked shocked. “He can’t really get better unless he grows some bones…” I joked. “Oh!” she replied looking startled, clearly contemplating the problem with the original question. We smiled at her to assure her that it was fine, and she came over from the other side of the desk to see Cade. She recovered by telling us how cute he is and by wishing us “The most blessed of Christmases”. No harm no foul, but I do hope she re-evaluates her small talk in the future. I mean, sadly, not everyone you meet at ‘General Admitting’ in the hospital is going to “get better”.

Prior to going to the orthopedics department, we were sent back to Medical Imaging for updated x-rays of Cade’s little feet. Last time we were there, Lyndon went into the x-ray room with Cade (only one parent is allowed to accompany a child in order to reduce radiation exposure). Being the mom sitting on the other side of the door hearing my baby wail just about ripped my heart in two, so this time, I insisted on going in with him. It was Lyndon’s turn to be the helpless parent in the adjacent room. The process was actually pretty quick and painless. We all wore lead vests, Cade laid on a table, and some nice technicians held his feet against a flat surface in different positions so different views could be captured. Cade cried a little but I suspect it had something to do with his hunger level.

Next we headed to the orthopedics department where we sat in the waiting room amongst several other children and their parents. I couldn’t help but see the children of different ages and wonder why they were there and what state Cade would be in at each age, mobility wise. During the lengthy wait, I fed Cade and stared at a skeleton display wearing board shorts. Cute.

“Cade Ellis,” the receptionist called. My heart did a flip. This was it. We were going to get the information that we had been waiting for. Our young doctor re-introduced herself as we had originally met her in the hospital in a post-birth daze. She jumped right in, doing a quick physical assessment of Cade’s body and movements while he laid on the table. She then asked me to hold Cade so she could thoroughly examine each foot. I scooped up my baby as she grabbed a chair with wheels and attempted to sit down. I say attempted because the chair kept rolling and the young doctor nearly landed on the floor. “Woooo!” she exclaimed catching the edge of the seat. I started laughing as that is something that I could so easily picture myself doing when acting as a professional! I stood holding Cade and she peered at his foot. Cade, being a baby and all, was a tad squirmy. CLUNK. He kicked her square in the face with his free foot. “Ahh!” she exclaimed again. Sorry about that. Dr. Ortho survived the examination and then left the room to review the x-rays. Cade, now exhausted, fell asleep in my arms (despite the hammering of construction next-door) and I paced the room awaiting the verdict.

After about ten minutes, she returned and pulled up Cade’s x-rays.

“We’ll start with the easy stuff,” she began, “First, his left foot.” His left foot?! Why are we discussing his left foot?! Isn’t that foot just fine?! “His left foot can be described as a case of metatarsus adductus,” she told us. Meta who?! “The front half of his foot turns inward some,” she explained. I looked at his “good foot”. It did form a bit of a “C” shape on the inside. “You see this type of thing with a club foot, but Cade’s ankle is positioned correctly so it doesn’t fall into that category.” She went on to tell us that some professionals recommend casting to straighten the foot but she has found that while the foot will emerge from casting in perfect position, it makes its way back to the original position as soon as casting is completed. “So rather, I recommend you do stretches with him. Hold his ankle and stretch his foot. Perhaps when you lotion him after bath time,” she suggested. I felt confused. How was I not privy to the fact that both feet were atypical? Lyndon later reminded me that the geneticist had commented on the curve in his left foot but rendered it “within normal limits”, hence why I had completely erased this conversation from my mind. This was all very confusing. 

“Okay,” she said with a breath, “his right foot.” I felt a sense of impending doom. “The good news is, his talus is not vertical as I originally suspected.” What?! I felt like all we’d ever been told up to this point was moot. “He actually falls into the category of oblique talus.” Okay. “With oblique talus, the talus bone is positioned in the wrong direction while weight bearing, but aligns normally when the foot is pointed down. This is good news because it’s less severe than a foot with vertical talus,” she told us. She continued to tell us that the treatment is similar to what we expected but would not begin until six months of age. Cade would receive a series of casts – a new one every week for five weeks. At the end of the casting, a surgical procedure would be completed to pin the talus bone in the correct position. This all sounded reasonable. “Could this surgery be completed at the same time as his toe separation?” we asked the doctor. She said that likely, it could, and she would consult with our plastic surgeon on this matter. But to muddle things even more, she then added, “But I don’t even know if that needs to be done!” “Umm… Dr. Plastics said it was one hundred percent necessary,” I told her. “Oh… I’ll talk to him,” she replied. Alrighty then.

This appointment would have felt all right had it stopped there, but we had not yet discussed the elephant in the room. “So Cade is missing some bones in his foot,” I stated. We all looked at the x-ray. Dr. Ortho proceeded to outline what Dr. Plastics had said – that he is missing the third “long bone” and the bones for what should have been his first and second toe are fused together. “Does this change the prognosis for the success of the talus surgery?” I asked her. “Will he walk?” I breathed. She answered.

We can no longer guarantee that his foot will be functional.

I felt the weight of those words bear down on me. She told us that only time will tell. “We refer to the chain of bones in feet as ‘rays’,” she explained. Feet with three rays are not functional,” she told us definitively. “Cade has three and a half rays.” “Best and worst case scenario?” I asked her. “Best case scenario, Cade has enough bones to bear weight and a wide enough foot to act as a platform. He could use his foot and move about as other children do,” she told us. ‘I pick that one,’ I thought. “Worst case scenario, his foot is unable to bear weight. We would be looking at a planned amputation and he would be fitted with a prosthetic.” Oh my God.

A typical baby foot x-ray marked to demonstrate Cade’s bone differences.

Until that day, never in my wildest dreams, would I have imagined that we would be in a position to potentially be exploring the possibility of amputation of not one, but two of our child’s limbs. Honestly, it still feels unfathomable.

If I could go back, I would have asked a million more questions. Honestly, it was all just too much to process to form any sort of helpful follow-up inquiries in that moment. She made a referral to Rehabilitation so that we could meet with the prosthetic expert for information gathering purposes. The walk back to our car was silent. To be honest, I was simply holding in my tears. When we reached the vehicle I started sobbing. When we first left the hospital with our newborn baby boy, we were told that his foot would be mended before he was able to pull himself to stand. Now, we were facing the possibility that what he has may not lead to mobility, and the most drastic of actions may need to be taken so that Cade can walk.

It’s been a few weeks since this appointment and I would be lying if I said I’ve been able to operate like normal. A lot of tears have been shed and I find myself trying to find the very fine line between optimism and realism. I do not want to spend months fearing a worst-case scenario that may not come to fruition, but also want to be mentally prepared for the fact that it is a real possibility that it could. 

On our way home from the hospital that day, we stopped to get the mail. Several weeks ago, I had applied for Cade to become a member of the Child Amputee (CHAMP) program through the War Amps. Ironically, there lay his membership letter, welcoming our little champ into this amazing, supportive, program for little ones with limb differences. I thought back to the day this all began – our twenty week ultrasound – when we came home to an advertising pamphlet for the War Amps. At that time, it felt like a cruel, cruel, reality check from the universe. This time, it felt like we were less alone on this journey.

I don’t know what will happen next. Like, literally. In my state of shock, we legitimately failed to ask what happens next. I’m not certain that we’ll see Dr. Ortho again prior to the six month mark. I’m not sure if the surgery to fix his talus is a one hundred percent certainty regardless of the final outcome – do we go ahead with this procedure and see how his foot works? Or will they know as the months progress if his foot will be functional prior to him trying to use it? We clearly have some follow up to do now that we’ve had adequate time to process this new information.

But for now, we have been enjoying celebrating our first holiday season with our little CHAMP. Happy Holidays, all! Thank you for being a part of our journey. xo

One thought on “Will He Walk? – Our Little “CHAMP”

  1. Amanpal Bilkhu says:

    You guys are doing an amazing job navigating the challenges of the hand you’ve been dealt. Cade is lucky to have such thoughtful, pensive and empathetic parents helping him through this journey. Marya and I are available for support in any form you guys need at any time.

    Like

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