Our Decision

8/2/2012.   At 3 mo old we went to her next appt at Shriner's Hospital for Children, Portland OR.   She had her first x-ray.   At this appt we found out that her limb length difference, at full growth (meaning if she had no surgeries or intervention) would be approx a 15% limb difference.  Estimated at 5-7".  Here is what her limb difference looked like at 1mo old.

 

Her first xray. 

At this appt Dr. R talked to us about our 2 options.  Limb lengthening surgeries and amputation.  Allison's limb difference was on the upper end of what could be lengthened, but it could be done.  Her first surgeries (yes plural- surgeries) would have started at about age 5.  This would be to reconstruct her ankle.  Then the surgeries for limb lengthening would have begun at about age 8, and that is, from what I have read, about a 6mo process for each lengthening.  She would have had multiple lengthening surgeries over the next many years. Yet we didn't even know if her ankle could be reconstructed so that it would be weight baring- and even if it was - it would have been fused and would be immobile and could possibly still be painful to walk.   Dr. R also talked to us about amputation surgery.  She could have surgery at an early age and get fitted for a prosthetic right way, to keep with her development milestones.  She may have to have more surgeries in the future - but she would have more mobility than lengthening.  This was a lot to absorb at our appt.  Dr. R told us to go home and process this.  We didn't need to make our decision that day- but with in the next few months.

First we thought we would try a brace on her left ankle/foot to see if there was a possibility that it would help correct the way her ankle turned her left foot outward. The Orthotists and Prosthotist maker, Dr. Todd as we now call him, made the one below.  He told us to leave it on as much as possible and if there was any red marks that didn't go away within a few min of taking it off - to leave it off and call them back.

We noticed that first night that she wore it that she woke more often than normal and was a little more irritable.  She wore the brace for about 28-32 hours.  We took the brace off to look at her ankle that Friday night, thinking we would would leave it off and see if she slept any better that night.  Just our luck, red marks that didn't go away.

We had spent the past 48hours processing the information that Dr. R had given us.  We decided that night that the brace just really wasn't worth it. Her limb length difference was just going to be too much to lengthen - we ultimately made our decision over that weekend that there was no point in trying to correct her ankle when we knew in our hearts that amputation surgery would be the route we were going to go. Once we had talked about it and made our decision - there was a little bit of weight lifted off our shoulders.  We knew this was the best decision.

We went for our next appt on 9/21/12.  Allison was 4.5 mo old.  They took xrays of her ankle and her foot. 

 

We learned that ankle bones should be on top of each other - hers were side by side. (see above middle xray.  The only way to correct her ankle would be to reconstruct it and fuse the bones into place.  No mobility.  You can also see in these xrays that her left fibula bone is very very small.

Seeing these pictures of her left ankle was just conformation that we felt that we were making the best decision for her future.

We talked it over with Dr R. and told her our decision.  She agreed with us that this is the best decision for Allison.  The next step is getting inline for surgery.  When we left that appt - We were on the list to schedule her amputation surgery for November.  Allison would be just over 6 mo old. Dr R. wanted to do it when she was that young so that when Allison started to pull up to a stand and walk, she would do it with her prosthetic leg.  Within just a few days we received a phone call from Scheduling - Her surgery was set for Fri Nov 9th. We had the date. It was just 7 weeks away.