Jarvis | Special Thumbs

So it has been quite the journey to get all of our medical care set back up and functioning after this move, and I have learned quite a few lessons- for the next move. Sigh.

We were finally able to get a referral for a consult on Jarvis’ thumbs. I last gave an update over a year ago, stating that we were going back in the summer for another set of x-rays and a consult. We did do that in Minot, and although that doctor recommended we go ahead with surgery fairly soon, when he found out we were moving in October, he suggested we just wait and get a second opinion.

We were referred to see an orthopedic surgeon at the National Children’s Hospital in DC. We were very impressed with the facility and the doctor. The surgeon was straight-forward and not ‘surgery-happy.’  They did the quickest x-rays we have ever had in office and the doctor (who for the first time in our experience had actually SEEN another case of triphalangeal thumbs!) was very optomistic. He confirmed that Jarvis has a mild case and said that his bones look very good. He thinks the slight curvature (more in the right hand than left) is due to cartilage pulling the bones slightly. He thinks that rather than getting worse, this cartilage will harden with age (as to be expected) and stay the same. He was impressed with how Jarvis used his thumbs and did not see any issues. He also mentioned that if in a few years or  whenever, we decide to have the surgery done, that he will use a technique that simply shortens one of the bones and will not be too hard for him to adapt to.

We had all of our concerns addressed and feel good about our choice right now! Jarvis has a very good use of his thumbs and we actually feel they will be a benefit to him in the long run. We still feel that surgery simply for cosmetic reasons is not the right choice for Jarvis or our family for many reasons.

Any questions?

8 thoughts on “Jarvis | Special Thumbs

  1. What a delight to see your beautiful little family grow.
    I actually fell upon your blog quite by accident. I was on pinterest and saw your article on cloth diapers!
    As I browsed your blog I noticed we had a few things on common : first, and most importantly, we both love the Lord, second, I too, have lived through anxiety and depression I even had the same verse by my phone (1 Timothy) for a couple years. Lastly, I used to live in Minot North Dakota when I was little!
    My father was in the air force and we lived on the base (summit drive I believe!)
    Thanks for sharing. Your pictures and writings are wonderful.
    Congratulations on your new little one!
    Laurie

  2. I was born June of 1976 with triphalangeal thumbs. My case was so severe that my thumbs looked like upside down L’s! My left thumb is now fused, but the reconstruction of my right thumb was successful. My parents were told to wait so that the growth of my thumbs would not be stunted. I had the first surgery at 14 on the right thumb, and it was successful. I had 13 surgeries on the left thumb before the doctors had to fuse the thumb together (it no longer bends at all). By the time I had the first surgery, I developed horrible carpal tunnel. This happened because I created new ways to function without the use of my thumbs. To this day, I still use my pointer fingers and index fingers to perform the actions of the thumb, and can barely open my hands at the end of the day.

    I said all that to make this point….I wish that my parents had sought out at least a second opinion. Had they done so, I wouldn’t be on the internet googling information about my thumbs at 37!! I commend you for all that you’ve done to help your little cutie, and I hope he is doing well!

    1. Has anyone with a child with triphilangeal thumbs or Tara you yourself had any more children? My son has Triphilangeal thumbs and I just want to know if the chances are greater that if I have another child, they too will have this.s

      1. I did the genetic testing as well and that’s what they said, but I was still concerned. You made me feel much better. My son had surgery on both hands and really benefited from it. He is in first grade, and public school offers occupational therapy for free. Pls let me knew if you have any questions.

    2. I wonder if my thumbs are similar to yours? They have kind of an L shape, but they’re not extremely long. I’ve never had surgery and I have had no issues using them. They function normally, to me… It is a little uncomfortable to bowl though, because of the shape.

  3. Hi I was just looking around on Google when I came across your blog! I have triphilangeal thumbs. They’re different from your son’s but in my family this is genetic. There are no other know medical issues than the triphilangeal thumbs. But we’ve never had it looked into either. My mom’s the first in the family to have this condition. Only two of my moms children have it, my sister and I. And only 1 of her 4 children has triphilangeal thumbs, and they look very similar to your sons.

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