Our daughter had been asking for a little sister for awhile….
I had been looking at the waiting child website off and on for a few days when I just happened on his face. It was love at first sight.
His diagnosis was malformed right foot. The picture in his file showed that his foot only had two toes, otherwise he was healthy. We knew he was ours right away. Our LOI was sent the next day, before our doctor even looked at the file. Once we did show our doctor the file, he had no concerns and told us to go get our son.
The day we got Warren was so different than the day we go his sister, Jaden. She cried and grieved for days. He ran into our arms and never looked back.
It was obvious to us that day that we were dealing with more than a malformed foot. His leg was thinner and shorter than his left leg and his foot was bent so that he was walking on the top of his big toe. But he never slowed down and needed no help walking or even running. We pretty much chased him all over Guangzhou!
Once we were home, we went to the usual medical appointments including our adoption clinic. It was here that we found out his malformed foot was really fibular hemimelia. What this means for Warren is that he is missing the entire fibula bone and all ligaments in his knee. He is also missing multiple bones in both his foot and ankle.
Fibular hemimelia causes the affected leg to grow at a much slower rate than the unaffected leg. In Warren’s case his length difference will be about six inches when he is fully grown.
At our first orthopedic appointment, they told us our only option was amputation. They asked us to wait a few months because a new doctor was joining the practice and he just happened to specialize in limb issues. So we went home and prepared our lives for Warren’s amputation.
Little did we know, amputation was not what God had in mind.
Three months later Dr. Ruggles walked into our lives. If anyone was ever called by God to be in the right place at the right time, it was Dr. Dan. He spent 2 ½ hours with us that day explaining everything we needed to know about FH. He also told us his plan for Warren was limb lengthening and all that it entailed. We left that day knowing that we had a choice and that our son would not lose his leg.
So began our journey with limb lengthening.
Warren’s first surgery was one year to the day after we adopted him. His ankle was corrected and he had a tibial osteotomy. I got the wonderful job of turning the struts on his external fixator everyday. This was done to slowly lengthen the tibia bone. Warren handled this all like a champ. He spent two nights in the hospital with his first surgery.
It took him about two weeks before he decided he could walk in the external fixator. The hardest part about life with the fixator was trying to find pants to go over them. Luckily we have a seamstress in the family and Warren was sporting custom made pants!
He was in the fixator about two months and then it was taken off and he was put in a cast for four weeks. Once the cast was off, Warren was finally walking on the sole of his foot for the first time in his life!
One year later Warren had his second tibial osteotomy. He also had one of his two toes amputated because it was just in the way. We went home 24 hours after surgery and he was able to walk the next day. He did great, but we did run into a complication when his tibia bone pulled in front of his knee… Warren likes to keep his doctor on his toes because this has never happened to anyone else! We slowed the lengthening down and stopped early. Warren went through a lot of physical therapy to push the bone back behind his knee.
We had planned to give him a year off before we did his super knee surgery, but once again God had a different plan. Our beloved doctor was called to return to his former position at Cure International. This is a wonderful, Christian based organization that helps children with orthopedic issues in the Dominican Republic, and he wanted to see Warren through his surgery before he returned to work there. So this past November Warren had his “super knee” surgery. He now has an ACL in his knee to keep that tibia in place.
Warren has at least one more surgery in his future. He will have another limb lengthening around the age of 11.
Even during all of Warren’s surgeries and physical therapy sessions, he kept a smile on his face. He never let the surgeries and recoveries slow him down. He was riding his bike and scooter with an external fixator. He even went snowboarding four weeks after his super knee surgery!
Today Warren is your typical five year old boy. He never stops and – much to his mommy’s dismay – he loves sports. This summer we are finally going to let him play soccer since he has the knee to support it. He loves swimming which of course brings us a few stares because he doesn’t have five toes and his leg is marked up from the fixator. If he sees a kid staring at him he tells them he was attacked by a shark but fought it off. He is the most popular boy at the pool!
I remember being so stressed about his surgeries, but I look back and really it was easy. We made it. He made it. And he still has his leg. I do not judge anyone who decides to amputate. Each parent has to make the right choice for their unique child. For our family and Warren, the right choice was limb lengthening.
I will forever be thankful that Warren’s file never mentioned fibular hemimelia. We no doubt would have walked away from such a scary diagnosis. It pains me to think of what our family would have missed without Warren in it! There has never been a happier boy, he loves life more than anyone I know!
His special need does not define him, it just makes our life a little more exciting!