In honor of National Birth Defects Prevention Month, BYP is featuring some very special survivors!  This beautiful young woman is full of strength and cheer and what a joy it was to meet her and to share her story with you as written by her beautiful mother (also a survivor after the trials that were faced).  If you are interested in donating to Birth Defect Research, please let me know.  We are accepting donations and giving a portion of proceeds for every session booked in January to this cause.

On December 4, 2005 our daughter Ryleigh was born. She was beautiful and perfect! To our surprise her right foot was twisted almost upside down! At the time I was in shock and concerned. Ryleigh’s condition is known as “club foot”, a congenital anomaly that happens to about one in one thousand babies, mostly girls, and has no known cause. Immediately we got in touch with an orthopedic and Ryleigh was put into a cast from her foot up to her hip.

The goal was to manipulate her foot while her bones were soft, eventually over correcting it. This entailed a trip to orthopedic doctors in Richmond, Virginia once a week to have a new cast put on, each time twisting her foot in the opposite direction it was originally in.  After 5 casts they decided she would need surgery. The surgery was nerve racking, of course, but minor considering what was to come.

At about 3 months old she had her Achilles tendon cut and that allowed doctors to further twist her foot backwards. Three weeks in another cast and we were done!  Then, she had to spend 2 years in braces, which were like a snow board with shoes that pointed outward.  We managed with lots of dresses, etc.

Eventually Ryleigh was crawling with the braces, and sometimes even standing up.  Two years went by and it was our last visit to see doctors.  We we’re so thrilled this ordeal was over!  I mentioned to the doctor that Ryleigh had a little bit of a limp.  The doctor took her back for X-rays.

Right away he came back and said “I’m sorry, Ryleigh needs hip surgery as soon as possible.”

What!! I was heart broken.

Really? How? What? Why? How does one even walk without a hip socket?  She had somehow been walking on her muscle.  My heart sank. A pparently babies born with club foot are sometimes also born with hip dysplasia, a condition where the ball and socket fail to form properly.

All she would have needed at the time of birth was a brace, and that normally takes care of the problem.  Now that she was about 3 years old surgery was the only option.  We were told the outcome was uncertain, and she may have to live in the hospital for a few weeks to stretch the ligaments before her surgery.  I was a wreck.  All that she had gone through and now this.

So we planned for the surgery. The surgeons did not know exactly what they would need to do until they opened her up.  Ryleigh’s dad and I took her in to say goodbye to her, kissed her, and tried to pretend everything was fine.  We went straight to the hospital Chapel and prayed our hearts out for her.

A few hours later the doctors called. They said for some reason Ryleigh was extremely flexible and they were able to easily pull her femur up, drill out a hip socket, and build a capsule out of cadaver bones to hold it in place.  The bones would grow with her, no metal screws, plates, etc. were needed, which was great!  Ryleigh would be able to come home in a few days and she would be in a cast for 12 weeks.

Looking at my baby in this body cast up to her chest with both legs pulled wide apart with a bar in between her legs was when I had to dig deep and hold it together and not let her see me cry.  The cast is called a spica cast.  This horrible contraption has a hole cut out for her to use the bathroom and looks quite disturbing!

We were able to get a special car seat that laid down, and a wheelchair that laid down as well.  The next couple weeks we learned through trial and error how to diaper her and feed her. We got quite creative, and once Ryleigh was recovering we were able to build a skateboard for her to lay on to get around the house.

I took her outside and tried my best to entertain her with trips to museums, the circus, and the mall. We got a lot of stares and looks, and Ryleigh would put a blanket over her face when people would do that.  All the while she developed a love for learning and for books, and she learned to read and spell several words before 3 yrs old.

Obviously life was all about adapting to the circumstances and keeping my sweet girl happy.  Through it all she never stopped smiling, never complained, and never stopped being a trooper.

This was horrible at the time, but looking back we were lucky it was caught when it was and that she had great surgeons.  We took every day as it came and adapted and overcame each hurdle.  This is why Ryleigh is my hero.  She is now 12 years old and has played soccer for years and done karate. She is a very gifted piano player, as well as a stellar scholar, reading on a college level and in advanced classes.

She is fearless. She is one of the kindest, gentlest spirits I’ve ever known.  I’ve never taken any of her accomplishments for granted, and she has shown me that I had an inner well of strength that I did not know I had.  I’d go to the ends of the earth for my kids like most parents.  Seeing your babies suffering is a pain like no other and hurt me more then it did her.

She recovered, learned to walk again, and went into another hip brace for a short time after.  She will be monitored yearly until she is 18.  She may develop early onset arthritis and have problems down the road.  One of her legs is a bit different in size as well as her right foot.  She has a bit of a different stride, but thats what makes her unique. Today she is perfect!