Short version: Sadie's having hand / arm surgery August 2nd in Atlanta.
Long version:
Sadie is 7 and has had 4 surgeries on her arms and hands. Unlike Hannah though, hers haven't been spread out. They were all within 10 months and occurred when she was 3-4 years old. Most know, but she was born missing her radius bone in her left arm. That caused her wrist to turn inwards and she also had no thumb on that hand. In her right arm, she has a radius bone that is "almost normal". It is just slightly shorter than normal. The result is her wrist is fine, but she had a "floppy thumb" that was kind of just hanging on by skin and totally non-functional. She also has a "radio-ulnar synostosis" which just means that at one point her radius and ulna bones are fused where they shouldn't be. Not a big deal and some people have it and never know it. The only effect is she can't fully rotate her arm from palm down to palm up. But she (like most who have this) compensates by being more flexible in rotating the wrist on that hand. Here are Sadie's hands before her very first surgery that was in December 2012.
She had four surgeries to straighten her wrist, and create thumbs on each hand. As part of the process there was a metal external fixator and multiple casts and splints. There were also multiple trips to Atlanta (Weekly for probably 2 months, than bi-weekly, than weekly again, then bi-weekly, then monthly, and finally after about 18 months we moved to every 4-6 months, which she's still at. The reason we've still been going is she outgrows her nighttime splint every few months and needs a new one. Here's some old photos from that time.
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Here's a pic of her sweet little hands after her wrist was straightened but before she had thumbs.
Finally, she got thumbs. That was the most exciting part for her. And honestly, the thumb surgeries were the most amazing to me. She could grasp things with her thumb and fingers for the first time and she learned to use it so quickly! It looks and functions like a natural thumb
All this took place between Dec. 2008 and Oct 2009. Since then, her thumbs have been perfect. She uses them well and there are no issues at all. Her wrist however has slowly turned back in. There are many reasons for this. Some are just left to "chance". Nationally, there's a 30% chance of this happening. But I think there were also some issues Sadie had that impacted hers. For one, because of her age, a lot was happening in a short time because her surgeon felt if the thumb surgeries weren't completed by about age 4, it would be very difficult for Sadie's brain to make the switch to use them as thumbs as effectively. We also tried to combine surgeries when possible to avoid too many at one time. For example, at one point she had a pin in her wrist holding it straight while things stabilized. That pin was taken out at the same time she had her thumb surgery on that hand. The timing was right for either. But I'm not sure the timing was right for both together. She had significant swelling after that surgery and when she was placed in a cast, it had the difficult job of needing to stabilize the thumb AND needing to stabilize the wrist. When the swelling went down, her wrist "slipped" slightly inside. As soon as I noticed, I called her surgeon and was able to head down to Atlanta that day to get a new cast, but I've always wondered if that effected things in a negative way. Add to that, when her first cast came off, she got a splint that again needed to stabilize the thumb AND needed to hold her wrist in place and that proved very difficult. Once she moved to a wrist-only splint again, things stabilized. But ever since then her wrist has been slightly more turned in at each visit (they do x-rays and measurements). Overall, that's not a big deal. It's never bothered Sadie how her hands look. And, well, I just love her sweet little hands. She is very functional and can pretty much do what she wants. But there are little things that I see her have a hard time with, mostly because that arm is so much shorter than her other one. At some of our visits, our surgeon mentioned possible further surgery. But I wasn't ready to go there and he is not pushy about things like that.
About the time school was out, I noticed Sadie has outgrown her splint again. So I made an appoitnment to take her to Atlanta. We went this week. But first, Sadie and I had a chat. She had mentioned her hands several times. So I asked her that if she was given the option of leaving her hand just like it is, or having surgery again to straighten it, what would she want? She immediately replied that she wanted surgery to straighten it. I asked why and she said "so I can reach things with both hands". That is one of the things that's difficult, though we've always found ways around it. She also later said she wants to be able to do the monkey bars (can't reach it now with her left hand) and turn a cartwheel. But I feel like at almost 8 years old, Sadie is old enough to have a strong voice in this decision. I get the final decision, but ultimately it's her body and she deserves to be listened to. When we were at the doctor, I shared with him my conversation with Sadie. He agrees and thinks we should plan on going ahead soon. He took lots of time to answer all my questions, which mainly were about "what will be different this time? How can we prevent her wrist from turning back in again if we do it?". The honest truth is we can't totally prevent it. There will always be a risk of that. But there are some things that might help. I personally feel like the fact that her thumb is no longer a consideration will be a big help. All casting and splinting that will come as part of the process will only need to be concerned with stabilizing her wrist. Her thumb is perfect and there is essentially no risk to it. He also talked to Sadie very frankly and told her what all was involved. She's been through it before, but at 3 years old she doesn't remember it all very well. She still wants to do it. I don't know if she'll be able to turn a cartwheel or do the monkey bars when its all over - she might and she might not. But she should be able to reach things with both hands better. And she'll have the opportunity to try.
So, she will be having surgery August 2nd! I asked to do it either before school starts, or wait until October, just for scheduling purposes. On that day, Sadie and I will head to Atlanta for her to get a fixator placed on her arm. It will be outpatient surgery. Last time, he wanted us to stay local just in case so we stayed in a hotel in Atlanta. But after 4 previous surgeries with her, this time I'm pushing to just come home that evening. She's always done so well afterwards. She'll have a couple weeks to rest and let it heal before we go back to remove the bandages. Then I'll begin turning the screws on it daily and cleaning the pin sites daily. There's always a risk of infection with the pin sites, and she did get one small infection last time. But a round of antibiotics cleared it right. up. Plus she will come home on antibiotics to try to prevent infection from the beginning. She'll have a plastic cover to wear over it and she'll be able to go to school and do everyday activities with it. I don't know how long she'll have it. Last time she had it almost 3 months. I turned the screws 6 weeks and then had to leave it on another 6 weeks to stabilize. But her wrist doesn't need to move as far this time. (Even though it's turned in, it hasn't turned all the way back in to where it was). We'll be trekking to Atlanta weekly during this time for x-rays. When her dr. feels she's ready, she'll have a 2nd surgery to remove the fixator and "centralize" her wrist. After that will come a cast full time for about 3 weeks, then a splint full time for possibly a few months (can take off for baths, etc.). Then she'll move to a night-time splint like she's had and she will continue with that until she's done growing. Eventually we'll move to bi-weekly visits, then monthly visits, and then finally we'll be back to where we are now - going in whenever she outgrows a splint. It'll be a long process, but I feel like I need to give Sadie this chance while she's young enough that it's still an option. So, say a prayer for my sweet girl - that pain / discomfort is minimal and that it "works" and gives her the results she's hoping for.
