Guest Post — Bailey’s Polydactyly Story, Part Two

Today’s we’re at Seattle Children’s for Reid’s surgery. I’ll be sharing what and when I can over on Instagram. While I’m out, Kristyn has returned with the rest of Bailey’s thumb polydactyly story. If you missed the part one, here it is!

We celebrated Bailey’s first Easter just two days after she came home from the hospital and the following  four weeks she was in a cast were not easy. Apparently, it can be difficult to keep an almost-11-month-old in a cast. The first week after surgery, Bailey’s bright pink cast didn’t look right to me. Her fingers seemed further back. So, I called her surgeon’s office. Dr. Sauerhammer said to bring her in. When she examined it, she said it had definitely slipped and Bailey needed a new cast. We got cast number two a few days later. Bailey did surprisingly well having her old cast cut off. Another doctor put the new cast on. It was more form fitting. Bailey’s elbow was more at a 90-degree angle. It was perfect. We were sure this would be it. About eight hours after we got that cast, it got wet. Really wet. You see bath time is something Bailey really enjoys. It’s also a great way to kill time toward the end of the evening when she’s crabby. We couldn’t not have bath time. I thought I had her cast wrapped well enough. I was wrong. Bailey got cast number three the next day. Back in business. Two days later, I received a hysterical call from my husband while I was at work. Her cast fell off completely leaving her new thumb exposed with the k-wire sticking out of it. I called her surgeon’s office. By this time, they recognized my phone number on the caller ID because I called so much. Bailey’s surgeon’s nurse said to take Bailey to the ER. I raced home from work. My husband and I worked together carefully to get Bailey in her car seat and keep her hand and thumb still. We arrived at the ER. It turned out they don’t regularly apply casts. There was a lot of confusion over what to do. Her surgeon was performing surgery all day. Several other orthopedists were gone. I don’t know if you’ve ever sat in the ER trying to keep an 11 month old’s hand still for four hours, but I can assure you, it’s not a good time. Eventually, the doctors were able to talk to Bailey’s surgeon. They settled on a thumb spica splint since we were having such trouble with casts. Luckily, it stayed on the remaining two weeks. 

We got a preview of Bailey’s thumb when her cast fell off. I thought it looked really good. I was nervous for the day her cast and wire were removed though. Would she cry when her surgeon pulled a wire straight out of her bone? She didn’t. Bailey didn’t even flinch.  Her thumb was incredibly swollen though, even more so than when the cast had fallen off. It also was not completely straight, which is ultimately what the wire was trying to accomplish. However, this is a common complication of Wassel’s type IV thumb polydactyly. It wasn’t awful, but Bailey definitely had what’s called a Z deformity. I was upset again. 

Bailey’s surgeon sent us to an occupational therapist to get fitted for a splint that she would wear at night to help with the alignment of her thumb. The occupational therapist measured Bailey’s thumb and it has a 15-degree angle at the interphalangeal joint. While it’s crooked, it’s not in a fixed position, so there is some hope of trying to straighten it with a splint. Much like Bailey’s casts, it took a while before we got just the right splint. 

Bailey had her surgery March 25 and is still wearing a splint at night. We will see her surgeon shortly for another follow up to see its progress. I think we’ve seen marginal improvement from Bailey wearing a splint, but it looks likely that she will need another surgery down the road to completely correct her Z deformity, which is common for her type of thumb duplication. 

Bailey exclusively feeds herself with her left (non-surgery) hand. She has trouble pinching her right thumb to her index finger. This is complicated by the fact that she has curved index fingers and her right thumb and index finger curve in opposite directions. I believe she has clinodactyly in her index fingers as well and I’m trying to get to the bottom of that, but that’s another story. Bailey is starting to use her right hand more, but her grip is not great. Bailey also can’t bend her right thumb. Her surgeon said it might be up to a year before we know what kind of range of motion she has in that thumb. 

We have another occupational therapist come to our home through our county’s early intervention program. She helps give us ideas and ways to help strengthen Bailey’s thumb and hands. 

Our journey is not over yet. In fact, it may be just beginning. Regardless of what happens, I know that Bailey will thrive and her experience with thumb polydactyly will only make her stronger and braver. She is a true gift and has taught me more about faith, patience and love in her short life than any lessons I could ever teach her.