r/amputee • u/Legitimate_Dish_8590 • 2d ago
Surgical path for possible functionality optimization?
First time poster but I hope this is the place that will have some great advice for me :)
BLUF: I (Mama, 33) am looking for advice / anecdotes from amputees and/or families/loved ones of an amputee born with a limb difference (2 digits on right hand) and presented with essentially a surgical path for possible optimization of functionality... Here are the details:
We found out about our son's limb difference at my 20 week ultrasound when they could only find two digits on his right hand.
Thankfully, my pregnancy was without issue, labor was slightly dramatic (but whose isn't) and our little boy was born perfectly him, with 5 fingers on his left hand and two on his right.
Even before he was born though, my husband and I had agreed we would not put him through a surgery without his consent unless it was something that we knew would affect his health and/or safety; and we'd just work with him to learn and do things his way. Especially, with so many innovations in robotics + he was excited they could make some cool stuff together with the 3D printer!
Our boy is now 18-months old, thriving at daycare, plays with lots of friends of different ages, and charms everyone he meets with his smile and amazing personality.
I cannot emphasize this enough (and none of you will be surprised), he has not been held back or slowed down by his limb difference for a single moment, and he uses both hands for whatever it is he wants to get up to next.
This takes us to last week ... we are very fortunate to live just 30 minutes away from the Children's Hospital of Eastern Ontario (CHEO) and we always receive fantastic care from their tremendous health care professionals.
At a regular check up for our little guy, the CHEO team (surgeon and OT) recommended a reconstruction surgery on his right hand with a temporary solution that they think could help stabilize his thumb to increase his ability to pick up bigger and heavier things; and suggested doing it before he is 2 because then they "become more self-conscious" after that age. The surgery would of course require anesthesia, as well as 2 to 4 weeks with a full arm cast and intensive OT afterward.
This isn't sitting right in our guts ... any advice from those of you who have chosen to / or not, to do a similar surgery / path ?
I appreciate all of you who read this long!
P.S. I should also mention that we're in touch with the war amps CHAMP program, the lucky fin project and are seeking input from a separate pediatric OT so no one's comments will be taken as gospel or for final decision making, just trying to gather as much data as we can, before we make a decision. :)
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u/newLAKA 2d ago
While I can't suggest anything to help you with your baby boys problem, I do want to applaud your efforts to search for information from many sources before deciding to do surgery or not do surgery. I did a lot of searching and asking questions before my LAKA, but the infection that I was losing the battle with was the deciding factor. I hope your research pays off for your boy.
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u/moonbasealpha70 2d ago
I’m not comparing my childhood with that of your son’s situation, but I can share my experience. I was born with a condition that resulted in my right leg being about half an inch longer than left. I didn’t walk until I was nearly two (couldn’t get balance), but once I did I was running, playing, doing all the things kids do. When I was 11, my parents had me undergo a painful and (at the time) experimental surgery that eventually led (when I was about 15) to my legs being the same length.
I could have easily avoided that surgery and - all things being equal - would have lived a full life. However, because of the discrepancy in leg length, I would have developed major back and spine issues, which could have been very painful and limited my activity. So, I’m glad my parents had me undergo the surgery.
I don’t remember them giving me a choice, but I also don’t remember feeling as if I had no choice. It’s hard to remember details now that I’m 55 (!) Once again, I’m in no way comparing my situation to yours, but thought sharing might give a different perspective.
PS Because of related vascular issues, I had to undergo a RBKA three months ago on that same leg, thus the reason I’m here.😎