A Little Something Extra

Friday, October 2, 2009

Micah's hand

Yay! My first Micah question. Today is Day 2 of the 31 for 21 challenge. Today's post is a response to Paige's question about Micah's hand: "i've wondered about Micah's hand. Does he have a unique hand? it's hard to see from the pics - & if so, is it a result of ds?"
Yes, Micah does have a unique left hand. It's a result of amniotic band syndrome (ABS) and has nothing to do with Down syndrome. Basically, the theory is that his fingers got "caught" in the amniotic sac while it was forming. There are a few different theories about how this happens, but no one knows for certain. Depending on which appendage gets caught, it can cause a miscarriage. Fortunately for Micah, it was just his fingers. All four of his fingers end before the first joint. His thumb is unaffected.

So... rewinding to the day Micah was born... We didn't know ahead of time about his hand. I had countless ultrasounds. Micah always appeared to have his hands in the boxing position. Now we know it wasn't due to his left hand being clenched. Anyway, Micah was born via c-section (thankfully... long story for another time perhaps). I only briefly saw him bundled in a blanket before he was taken to the NICU. Because I had an emergency c-section, I had a spinal (compared to a standard epidural) and it takes a bit longer to be able to move afterwards so I wasn't allowed to go see Micah in the NICU. The NICU transport nurse had him packed for transport to Milwaukee and they stopped by my room on the way out (they wouldn't let me take him out because he was bundled for transport. I still hadn't held him, and wouldn't have the opportunity to do so for a few days until I was released from the hospital and able to go to Milwaukee). This was the first time I saw his hand and I started to cry. I was so sad that there was yet another medical issue for this little baby to overcome. It just didn't seem fair.

Micah has been seeing a plastic surgeon who specializes in congenital hand deformities. His last x-ray (I think that was in June?) showed that there is not enough soft tissue above the bone in his pointer finger to do a bone graft (from his toe... crazy, huh?), but it could be done on his middle and ring fingers. But the best way to lengthen his fingers is going to be a surgical procedure when he is about 4 years old. They would insert pins that would have screws on the outside that you would turn every day. Yuck. We have plenty of time to make that decision so it's on the back back back burner. If we did proceed with something like this, it would definitely be for functional reasons, not for appearance. It would not give him joints in his fingers or make them "normal" length. But it might help him to do more things. Honestly, this weighs on me a bit because we do hope that Micah is able to work and live independently someday, and manual labor might end up being his ticket to that life.

Meanwhile, Micah uses his hand very well. His therapists often note that he does not favor his right hand over his left very often. And that makes sense because he doesn't know any different. It's not like he knew what it was like to have long fingers on his left hand and then lost the digits. It's amazing how his body compensates.

I've grown to love that sweet little left hand of Micah's. I think it's adorable. Thanks for asking, Paige.

Anyone else have a question about Down syndrome or Micah?


Jonathan said...

Thanks for your post on Micah's hand. I had somehow gotten in my mind that two of his fingers were affected, not four. Since you're asking for questions and haven't gotten any, I'll ask a couple.

I have a friend here whose daughter has DS, and she ended up with a couple of teeth (bottom middle two) that didn't develop and come in. Does Micah have any tooth issues related to DS?

Also, can you tell us about how he's really flexible-I mean limber?

Love to Micah and all of you. Thanks for praying for Gracie today! She is doing fine and going to be fine-hope you saw my post. :)


Monica Crumley said...

Micah is so adorable! Interesting post about his hand. I used to wonder if John Michael wouldn't be able to do certain fine motor things because he has short fingers, but like anything, he knows nothing else and does just fine. I, too, love his little chunky fingers :-)

Anonymous said...

Hey Jennie,
I love that you're doing this. What a fun idea. I have a question. It seems like most ds kids/people I meet have a sweet disposition and that they're very open and trusting. Have you noticed that and what do you think is behind that?
Love you, Girl!

Emily said...

You are getting some great questions! You go girl! Micah is so adorable!!

Heidi said...

I love that first picture of Micah - he is so cute!

I found it very interesting to read about Micah's hand. It is amazing how his body compensates and that he doesn't favour his right hand. What an amazing little boy!

Four Wonders Mommy said...

I did not know that about Mr Micah! I have a friend that lost all four fingers at age two and she, too, functions fully with them! That surgery sounds scary--whoa! Micah gets cuter every day!

Michelle said...

That picture of newborn Micah is so sweet!! I remember coming to meet him at the hospital, he was so small & darling.

cairo said...

i gotta agree with you - that his hand is pretty adorable. i'm glad it (treatment, surgery etc...) can go on the back burner - even though i know as a mama that it weighs on you a bit when it's just resting there.
Thanks for not making me feel like a dummy - i just love this blog & the beautiful impact that your whole family has.

fiddlincairo said...

(sorry the cairo comments are me, paige - my dd has me all logged in under her name :)