Based on Dr Standard’s initial calculations, Emma’s limb length discrepancy (LLD) due to FH would be about 7-12 cm. He said these calculations tend to be an over-estimate. Emma’s LLD was 3.2 cm as of this appointment (at seven weeks old it was 1.7 cm). Theoretically, children have half of their total discrepancy by age 4, so Emma’s LLD should be about 5 cm at 4 years old. Keep in mind these are average numbers, not exact, and everyone’s growth is different.
Emma’s ankle did seem to be very favorable based on the X-rays taken in Jan 2012 and it appeared she had both the talus and calcaneus (ankle bones). With FH sometimes kids don’t have both (these bones may be fused) or they may be oriented in a less than ideal way that makes the ankle not as stable (one of the main problems with FH). Before the Jan 2012 X-rays, we were concerned Emma may not have both important ankle bones, but thankfully it looked like she did.
It was decided during this visit Emma would have her Super Ankle surgery (ankle reconstruction), and we were explained in detail what to expect and decided on a date (for surgery specifics, please see “Specifics about Surgery’ section).
My husband and I wanted Emma to have her surgery within the recommended 12-18 months of age and we felt the sooner the better so she would have no memory of the surgery.
Our plan became a little more complicated and stressful because my husband and I found out we were expecting another baby! We were now expecting our second baby who would be due on June 15, 2013, so it was essential we time Emma’s surgery just right. I would have to travel from FL to MD, stay for two weeks for Emma’s surgery, rehab and post-op appointment and be back home before 35 weeks of pregnancy when I was restricted from flying.
Choosing a surgery date eventually was decided and would be right after her 1st birthday in April 2011.
The purpose of the Super Ankle procedure is to have a more stable, anatomically correct ankle (meaning not rotated) and a straight tibia. The procedure would gain 1-2cm of length to her tibia.
The 4 basic steps of the Super Ankle procedure are as follows:
The extent of all of these steps could not be fully determined until she was in the OR as specialized X-rays were needed of the ankle to make sure the two bones were not fused. Also Emma needed to cooperate, (aka “sleep” under anesthesia). Remember, she would only be 12 months old!
Dr. Standard told us this would be a 3-6 hour surgery. Hospital stay would be 3-5 days, and we would remain in Baltimore for 10-14 days until her post-op appointment with Dr. Standard.
Although we were given a lot of information, things were now beginning to make sense as this was probably Dr. Standard’s 10th time explaining all the details to us!
One thing you can be assured of, if you need time at your appointments to understand and have pictures drawn of your child’s bones before and after the procedure, you will find Dr. Standard is patient and kind and not put off by many questions. Not only did my husband and I ask many, so did my parents. I strongly recommend you bring someone else with you for support and hearing something you may have missed.
