Syndactyly

Ellie was born with a webbed left hand, which is called syndactyly. Syndactyly is a condition where two or more digits are fused together. Around 16 weeks of gestation, an enzyme dissolves the tissue between the fingers and toes, making the webbing disappear. Rarely, the process does not completely dissolve the webbing. I've seen different statistics about how often this occurs, but it occurs about 1 in 2,500 according to Children's Hospital Boston.

The causes are unknown - it is often a fluke, but sometimes can be caused by uterine banding, or other disorders. Chromosome testing was done, and Ellie does not have a disorder which led to her syndactyly.

If syndactyly involves only skin, it is considered simple. If the webbing extends all the way to the finger tip, it is complete. If the webbing extends only partially up the finger, it is incomplete. If there is bone involvment it is complex syndactyly. That being said, Ellie's first web (thumb and index finger) has a complete complex syndactyly with a complete union at the distal phalanges bones, meaning they are fused. (see diagram above). Her 2nd web (between index and middle) has a simple complete syndactyly. The third web (between middle and ring) has a simple incomplete syndactyly, and the 4th web (between ring and pinky) has a simple incomplete syndactyly with 5th finger clinodactyly. Clinodactyly is a fancy way of saying the pinky curves toward the ring finger. Also, her 2nd and 3rd fingers are each missing a phalange bone, meaning they will be shorter than the others.

The correction will take place in 2 stages of surgery. The first stage is described below.

Procedure #1

On July 7th, Ellie will have surgery to separate the 1st and 3rd web on her left hand. The procedure lasts 4 hours, from the time they start anesthesia, to the time she is waking up. They put her to sleep with a mask, and then start the IV anesthesia. We meet with the O/R nurse prior to surgery, the surgeon, and the anesthesiologist. The anesthesiologist and a nurse anesthetist will be with Ellie through the entire procedure. That makes me feel SO much better, just to know they are monitoring her closely the whole time. And this is a pediatric hospital, so they specialize in pediatrics, and it is a designated pediatric anesthesiologist. That also helps us stay calm about it. Or calmER, anyway.

The surgeon will be separating the bone connecting the thumb and index finger. There will also be quite a bit of skin needed for that web to give her thumb the full range of motion necessary, and to allow growing room. If you look at your thumb, see just how far it actually can move, and how much your skin stretches to accommodate, and you can imagine how much she will need. They do a full thickness skin graft and take it from the groin area, right in the crease. That site will have stitches, and a sterile dressing put on, which makes the risk of infection only 1 in 10,000. If you’re wondering what a full thickness graft means, it means they include all layers of the skin, whereas with an adult they would only need the top layer.

Once the thumb and index finger are separated, there is possible pinning needed to straighten the index finger. It depends on what they find. Sometimes when they do the separation, the finger lays where it is supposed to right away, and sometimes it needs a little help with pinning. They are also separating the skin webbing between the 3rd and 4th fingers. There is not much webbing there, just a bit. After the surgery we’ll have a daughter with a lobster claw! A thumb, and 2 sets of 2 fingers. We might not even get to see the lobster claw, because there will be a cast put on during the surgery. We even get to pick the color ahead of time! (it’s the little things, people) The doctor says the cast will be a big old boxing glove, really thick and padded around the hand, and it will taper up the arm. And yes, it will be a full arm cast. They say she will probably not move her arm for about 2 weeks because she won’t know what to do with it. Poor thing. She’s going to be very upset not to be able to shove her whole fist in her mouth like she does now. It’s one of her favorite things! Because the 2nd stage surgery is 5 weeks later, and the cast is worn for 4 weeks, they are probably going to leave the cast on until the 2nd stage surgery, with no break in between.

After the procedure, Ellie is moved to the recovery room, where they let the babies sleep and wake up on their own. If she is still sleeping after an hour, they start talking to her to initiate the wake-up process. When she is awake, they reunite us, and we all travel to her room where she will be staying overnight, probably for just one night as long as she is safe from infection and is handling the pain ok. They first administer pain meds and antibiotics through an IV, and move to oral meds once her tummy is returning to normal. This whole while she will be hooked up to monitors to keep track of her vitals.

The day of the surgery, we can give Ellie clear liquids up until 4 hours before surgery, and nothing after that. I am not looking forward to having to starve a six-month old hungry baby, but she is usually fine if she’s got plenty to look at. Though, who knows. She may be EXTRA hungry with having had only clear liquids. I probably dread that more than anything, and what coming out of anesthesia will be like. She can really get crying if she’s unhappy about something. LOUDLY, might I add. After the procedure, they start by feeding her pedialyte (once they know her tummy is awake). Depending on how she takes that, next will be pedialyte and a little formula, and so on until she’s ready to handle the formula without problems.

We are getting nervous as the day approaches - just 5 days away. I know Ellie is in good hands. It is a very reputable doctor. I don't want to reveal the name or the hospital to protect our identity, but suffice it to say both the doctor and hospital are reputable. Besides the care, God is with us and will be watching over. I have confidence about that, since the surgery has already been rescheduled due to chicken pox exposure, and I have felt a peace about the surgery ever since. I just know God was watching out for Ellie and it was rescheduled for a reason. I know because she never even got chicken pox, and I was horribly nervous for the original date. I have no idea why, but I had MAJOR fear issues then, and they disappeared after rescheduling. Now I think it is a healthy amount of fear I have. I just know she is going to be okay. It is not going to be fun, but it will all be worth it, especially for her as she gets older. And thank goodness she's so young she won't remember any of this. What a gift. Don't say I'm a glass-half-empty girl, look at that! I plan to take and share plenty of pics, but honestly, I have no good ones yet. Have YOU ever tried to capture a wiggly 6-month old hand in a photo? Yeah, I don't think it can be done. I'll have to sneak in when she's sleeping.

Happy 4th of July to all! We'll be in complete lockdown to avoid any and all extra germ exposure. Some day Matthew will get a 4th of July - last year the flu made him miss it. This year, the lost year of 2008 is the culprit. I'll explain what I mean by THAT some other time.

Signing off....