“Ugggghhhhhhh… my hips hurt… my legs hurt… gaaahhhh I slept soooo bad last night.” That’s what Lyndon woke up to last Thursday morning. Lucky man. I moved my pillow mountain, rolled over dramatically (to ensure that he understood the seriousness of my plight) and grabbed my phone. A missed call and voicemail from a Saskatoon phone number. Today was the day that we were scheduled to meet with the pediatric plastic surgeon who may eventually work on our little guy’s hand. I would deem this appointment the first that I was actually looking forward to, as I knew that it would be completely information-based and that nothing new and scary could happen! Then again, the day prior, I learned that even seemingly benign, routine prenatal checkups with our family physician can still result in unfortunate surprises. At our 32-week appointment, we were told that the kid is currently breech. To that I said, “Of course he is.” Why wouldn’t he be? Google tells me that 70% of babies are in the birthing position by 32 weeks, so it makes perfect sense that ours isn’t because, hey, he likes to beat to his own drum and be on the opposite side of statistics. We now have yet another extra ultrasound scheduled for 36 weeks to reassess that situation. Anyway, I digress.
I punched in my passcode and crossed my fingers that this message was not going to tell me that we had to reschedule our appointment. “Hi Amanda! This is Dr. So and So’s office…” a cheery voice starts. Uh oh. “I’m just calling to tell you that unfortunately, our elevator is broken! So when you come to your 10:45 appointment, you will have to walk up six flights of stairs to reach our office! If that doesn’t work for you, call me back; otherwise, we’ll see you then! Sorry for the inconvenience!” Well this has started off swimmingly. I rolled myself out of bed and proceeded to get ready for our next adventure.
First stop, Starbucks. If I was going to climb up six flights of stairs following very little sleep, a caffeine booster was necessary. After waiting in an abnormally long drive thru line, the barista at the window handed Lyndon the first coffee, which he promptly spilled on his lap. A few muttered swears and an apologetic barista later, we were on our way downtown.
Upon arriving at the surgeon’s office, I walked speedily down the street as we were now cutting it close for time. Lyndon, however, seemed to be moving at a turtle’s pace. Annoyed at his lack of rushing, I looked back to assess the situation. Lyndon appeared to be having a full-blown argument with his coffee cup and a new set of coffee stains had appeared on his white shirt. My, this doctor is certainly going to think we are capable future parents!
We walked past the elevators plastered with “Do Not Enter” and “Out of Order” signs and started the trek up the stairs. Luckily, we followed a family with a young girl up who dictated the pace (i.e. slow); thus, I could pretend that we were moving leisurely because of her, not because I was completely winded and considering pit stopping halfway up for a break.
Upon reaching our sixth floor destination, I breathlessly shared our information with the receptionist. We took a seat in the waiting area and as we waited, I observed Lyndon, all coffee-spotted, responding to work emails on his phone. I couldn’t help it, I started laughing. Not just a small giggle, but a legitimate, loud, tears forming in my eyes, laugh. He took my laughter as an assessment of his competence as a human being and reiterated that “a lid should be able to lid!” expressing his displeasure at Starbucks and their clearly less than optimally designed cups.
Dr. Plastic Surgeon didn’t keep us waiting long, as it was at that moment that he appeared in the waiting room and introduced himself. We promptly apologized for our embarrassing coffee situation and shook his hand. Unusually, he reached out for a handshake with his left hand rather than his right. I immediately assessed his right hand thinking, “Oh my gosh! Is it possible that he opted for this particular career because he too has a hand difference!?” (No.) It turns out, the poor guy was recovering from some sort of tendon issue. I sent a little prayer to the universe that he be fully healed before being responsible for any slicing and dicing of my baby offspring’s hand.
Like most of our meetings with new doctors, our appointment began by reviewing what he/we knew about our case. He then suggested that it might be easiest if we simply ask him any questions that we have… if you say so, Doc!
What kind of surgery could we be looking at? When would this take place? How quickly after birth would you get involved? Is an isolated hand difference something you encounter often? What happens if the fingers are fused? What happens if his wrist isn’t straight? In your expert opinion, what is the likeliness that this is an isolated incident as opposed to a syndrome? etc. (He asked for it!). In a casual conversation, Dr. Plastic Surgeon patiently answered all of our questions…
He would ideally like to meet and assess Baby E while we are still in the hospital following his birth, and then continue to see him every three months or so to monitor the growth and functionality of his hand and form an intervention plan. The intervention plan will be created with the goal of gaining optimum functionality out of what he naturally has. In terms of surgical options, he discussed the necessity of separating Baby E’s two fingers if they are fused together (which he believes is likely). This could be completed at as early as nine months or as late as a year and a half, depending how big the little dude is. Interestingly, he pointed out something I had not yet considered: the possibility that the two fingers that do exist may also be atypical in some way. He explained that it is not necessarily as simple as his thumb, pinky, and ring finger did not develop at all, and his index and pointer fingers developed perfectly (makes sense when you think about it… that would be far too straight forward!). The two fingers that are present may or may not have all of the expected bones, tendons, etc. As such, a surgery separating the fingers could be relatively simple (if he has all the bits and pieces necessary for two fully functioning fingers) or more complicated (if he does not). At this time, orthopedics will remain uninvolved, but if there are any issues identified at birth that are “wrist up”, ortho will join the team. Beyond future surgery talk, Dr. Plastic Surgeon weighed in on what continues to be my biggest anxiety: Is Baby E’s limb difference an isolated incident or will we learn that there is more going on once he is born?
I really appreciated how Dr. Plastic Surgeon approached this question since he addressed it in a way that I could whole-heartedly relate to… taking an exam! He said that if he were to encounter a question on a test about what to do when presented with a seemingly isolated hand abnormality, the answer would be to start by ruling out the most likely syndromes with this particular symptom (e.g. Holt Oram Syndrome, Adam’s Oliver Syndrome). I wish I would have had the wherewithal to write down all four potential syndromes with long, unfamiliar names that he quickly rattled off, but to be fair, maybe it’s best that I don’t remember because, Google. What he did say is that two of the most likely comorbid issues with hand differences are heart-related and blood-related, so he advised that a chest and abdominal ultrasound be immediately ordered upon birth. He reassured us that all of the syndromes he spoke to us about are very rare (e.g. he had only seen one patient with Holt Oram Syndrome in his entire practice), but that they had to be assessed for and, ideally, ruled out. In addition, contrary to what other professionals have previously speculated, Dr. Plastic Surgeon shared that he would be surprised if our son’s hand difference was an amniotic banding issue. Given the particulars of how his hand appears to have formed, he expressed his belief that it is more likely that something disrupted the growth in the first place rather than the hand formed and then was disturbed. This particular sentiment brought for a bit of anxiety, as amniotic banding was one of the more favourable causes in my head.
Upon hearing this, I brought up genetic testing, and shared my concern that there is likely to be a delay in receiving results from genetics. I quite appreciated his answer to this concern as well! While genetics results may indeed take awhile, this shouldn’t stress us out because the team of doctors will simply be able to examine Baby E at birth for possible other issues (i.e. the aforementioned heart or blood issues). If nothing is found, then even if there is a chromosomal issue or if he qualifies for a syndrome, it doesn’t really change anything beyond giving him a label. The team will be treating the symptoms as seen. Genetics results will be more important in regards to our future children (ha, as if I could possibly think about that right now!).
At the end of our meeting, the doctor shared a sweet observation with us. He said that of all the kids he sees, in his opinion, the kids that are born with differences like our son’s, are often the most well-adjusted. “It’s amazing how adaptable kids are, especially when they are born with a difference,” he said. “The kids that I see that have differences following an accident… not always the case. But these kids… they are usually the more amazing ones.” We couldn’t agree more, Doctor.
On that note, we shook the doctor’s (left) hand again and thanked him for his time. It was in that moment that Lyndon decided to share his own little anecdote in regards to the doctor’s current right hand injury: “If you were in Cubs and Scouts, having a hurt right hand wouldn’t be an issue! In Cubs and Scouts the proper way to shake hands is with your left!” I wouldn’t know exactly how Dr. Plastic Surgeon reacted to that delightfully unnecessary piece of information, as I was beelining it for the door, but I believe he went something like, “Oh?,” in a surprised/baffled/not exactly interested tone. I quickened my pace in attempt to lead us out of there before Lyndon could further educate the man on the infamous “Scout handshake” and we made it to the safety of the hallway. I looked at Lyndon in his coffee stained glory and just had to smile. Our little one may have to alter that sacred Scout’s handshake in his future, because if he’s anything like his dad (which despite my slight embarrassment in situations like the present one, I do genuinely hope he is), he’s sure to end up in a Boy Scout’s uniform in his future.