Tuesday, May 31, 2011


Syndactyly is one of the characteristics of a patient with Apert Syndrome.  Simply put, it is when the fingers and toes are fused together.  While the bone structure underneath the skin may (or may not) be in tact - meaning there are bones for the fingers or toes, they are fused together by the skin.  There are actually several types of syndactyly with some hands being referred to as rosebuds.

Nina's hands were one of the first things that caught the eye of the doctors when she was born.  I vaguely remember my OB telling me that her hands looked like they had mittens on.  It is ideal for Aperts patients to have the digits or fingers separated before they reach 2years old because it is at that time when the child really starts holding/grabbing things.

We meet with Nina's hand surgeon today so that we can finally schedule the separation of her fingers which at this point she is eager to start using.

Our doctor, a plastic surgeon and hand specialist is suggesting that he only separate the thumb for practical reasons. But to this day, we are adamant that we want Janina to have the semblance of a normal life as much as possible.  She's a girl and I'd like her to have the chance of wearing rings later on, of playing the piano and of typing albeit in whatever manner/speed that may be.  I refuse to consider my daughter as a disabled child because she is not.  She is special - that is for sure, but she is definitely not disabled.  The doctor says that he prefers to consider function rather than aesthetics.  According to him, having the additional fingers would not improve the function of her hands that the most important thing is just for her thumb to be separated.  While I respect his opinion, I do not want to put a limit to my daughter's capabilities, more so to what God is capable of doing in my child.  I believe that if the Lord wants Janina to have full use of her fingers after surgery, He will allow it.  If my daughter wants to be a concert pianist - she can be one, regardless of how her fingers would look like.  The most important thing is for her to have all five fingers (of course if that is possible).

So armed with prayers to Mama Mary, Blessed John Paul, and of course to the Lord Almighty, we will face the doctor today to inform him of our decision -- that we want our daughter to have all five fingers if her bone and nerve structures will allow it.

Wish us luck!  We will definitely keep you posted.


PS... It's amazing what prayers to Mama Mary can do!  We met with the doctor this afternoon and he greeted us by simply asking us what we had decided upon.  He further added that he will do whatever we want and that he just wanted us to be fully aware of everything so that we would not expect the impossible.  For some reason, both hubs and I left his clinic feeling pleased with the doctor.  Yup, another answered prayer courtesy of Mama Mary!

We've scheduled Janina's surgery for June 7th at 7am (Manila time).  Please do not forget to keep Janina and her doctors in your prayers. 

1 comment:

  1. good luck and give em hell mama. You know whats best for your daughter and don't let any doctor bully you into a decision you aren't comfortable with.