Friday, May 3, 2013

How it all began....Part 1 (with pics)

I have been asked a lot recently how this all began.  With the rising autism rate (1:50), more and more people are becoming scared.  People want to know if anything precipitated this; most likely in an attempt to avoid becoming one of the many statistics.  I can't blame them.  Shoot, I would want to know myself.  So here goes.....

My pregnancy was BAD!  I was never one of those moms who breezed through.  From the get go I had problems.  I began bleeding in my first trimester which was later determined to be a result of very low progesterone.  To be 100% transparent, my hormones had never been right after I came off birth control pills.  I was given a synthetic progesterone pill,  Prometrium, to take for my entire first trimester.  I later discovered during my second pregnancy this was not the best option and the natural form is a better choice.

Around the 15 week mark I went in for my AFP test.  My results were poor.  It showed that Aidan had an elevated risk for a neural tube defect and I was quickly discharged from my OB/GYN in town, to Temple high risk in Philadelphia, PA.  At 20 weeks I had a level II ultrasound (this was in 2002) which did not indicate any abnormalities.  Whew!  Relief.  Then we moved to Pittsburgh, PA.

I was transferred to Magee Women's Hospital for the duration of my pregnancy.  At 26 weeks, another level II ultrasound was done.  There was silence.  Anyone who has experienced the room going silent during an ultrasound knows how horribly frightening this is.  The tech was squinting at the screen and continued to focus on one area intently. She then said, "I'll be right back".  TERROR!  A Perinatologist was brought in to take a look.  After his inspection I was told Aidan had bilateral (both) clubbed feet.  WHAT?!

From Wikipedia:
Clubbed foot is a congenital deformity involving one foot or both. The affected foot looks like it has been rotated internally at the ankle. Without treatment, people with club feet often appear to walk on their ankles or on the sides of their feet.  This occurs in 1 in 1000 births and boys are affected twice as often as girls.

I was told to get an orthopedist immediately and found a wonderful man, Dr. Jan S. Grudziak out of Children's Hospital, Pittsburgh.  Seven days after I had given birth, Aidan was down at Children's getting his first round of casts.  We decided to use the Ponseti Method to treat his feet instead of the traditional method.  Here is a link:

Aidan went through weekly cast changes for 8 weeks straight.  His casts went from the tips of his toes to the top of his thighs.  Each week the doctor would rotate his feet out a little bit more until finally at 9 weeks they looked perfectly straight   After his last set of casts were removed he had surgery on both feet.  He was put under general anesthesia and given Fentanyl for the pain while he was in the hospital.  His achilles tendons on both feet were cut and lengthened to prevent his feet from turning back in.  After, he went into another set of casts for 2 more weeks then to a Dennis Brown Bar (brace) for the next 5 years.  Aidan was required to wear his Dennis Brown Bar full time until he started to walk which was surprisingly early at 11 months.  After that he was required to wear it only when sleeping.

The process was a success.  He was walking and running just like any other kid.  Then he relapsed.  At 8 years old his right foot began to turn back in and he had to go to Levine Children's Hospital in Charlotte, NC for re-correction surgery which was another success.  Below are some pictures Scott took of Aidan while he was an infant going through his castings.  These pics have found their way on multiple sites which is really cool; even as far as Saudi Arabia! Hopefully it will be helpful for anyone dealing with this defect.  Feel free to share.
And these are on his way to surgery (me & Aidan) and after his surgery in 2010 for re-correction

Now on to part 2.....

much love......