Were we even saying “googling” back then, when I started researching fh? I can tell you that I looked at each and every result that google came up with back then. But in the fall of 2003 there were only several hundred. Today if you search fibular hemimelia there are 9,702. Clearly I wont be looking at all of those but I wonder if they are any more hopeful than the ones I found 5 years ago. And I didn’t just search fh back then. I searched any related term I could think of. Without much success. Today the first result that comes up is from emedicine and it would tell you straight off the bat that Nicholas’ leg should be amputated because they say the maximum amount a leg should be lengthened or “corrected” as they put it is 7.5-15 cm. Nicholas’ estimated discrepancy was 20 cm.
Those early searching days were frustrating and at times heartbreaking. There were the stats: one in 40,000 births, more common in boys. And the details, occurred during early limb bud formation, bowed tibia possible femur and hip issues and lots of medical terms I wont share. A new name was suggested, Postaxial Hypoplasia of the Lower Extremity, because fh involves so much more than the fibula and it’s absence or shortening. Amputation was the standard treatment. Even for cases much less sever than Nicholas’. Now don’t get me wrong the children who had undergone amputation were living well and had web sites and support groups to show it. Some were paraolympians and all were to be admired.
But I wanted to go online and find success stories involving limb lengthening as well. Instead I found warnings against it and lists of risks and complications. Some doctors refused to do it. There I as with my one month old baby boy, thinking he would either have to have his leg amputated or go through this crazy painful process that some people even likened to torture. Even without the negative stuff I found about lengthening on line, it is still pretty scary sounding when you first hear about it. External fixators are not pretty. Nicholas once called his a “hunk of metal”. Which it is. But it is a hunk of metal that enables him to grow new bone and it keeps his leg safe, so we do appreciate this hunk of metal very much. Just yesterday Nicholas fell down right on his fixator three times and was fine. Most people never really see it. They only see the fun home made covers that conceal it. The covers both keep it clean and keep from shocking people all over town. I think he has 16 pin sites, which means 16 places where there is something sticking out of his leg, sixteen potential sites of potential infection. I should know. I stare at his leg each night to clean it with antibacterial soap and make sure the pin sites are clean. It is a sight I am quite comfortable with now but seeing them online when Nicholas was still a newborn baby was overwhelming to say the least.
During the search and research days I was scared and exhausted. With in a year of Nicholas being born we had bought our first home, been married and I had gone back to school and was working on the weekends. Steven was working two jobs so he was no less tired than me but I was the researcher, appointment maker, question asker, you name it. Steven was just as interested in doing the best we could for Nicholas but he didn’t even have an email account back then and I did take charge from the start. Moms usually do and research was something I was quite familiar with.
All my investigating was done either between classes, during classes I skipped or at night while Nicholas and Steven slept. The library at Saint Francis College was an amazing resource because there I had access to actual medical journals for free! Even though they were hard to get through I had learned enough about research by then to know which parts of the articles I needed to focus on. There were actually studies out there that did not demonize limb lengthening and they were not all written by the supposed cowboy, Dr. Dror Paley. Making our trip to Baltimore would be the next step in our journey.