Thursday, June 23, 2011


As mentioned in my previous posts, syndactyly in the hands and feet are one of the characteristic traits of Apert Syndrome.  At two years old, a child begins to “learn” how to make use of her hands via grasping, grabbing, holding, etc.  This is a crucial time for the development of her motor skills – both gross and fine.  Such is the reason why the release of the fingers, most especially the thumbs, need to be done before the child turns two.

I hate to admit it but I have a weak stomach when it comes to blood, and surgical procedures.  When faced with bloody situations, I often feel my vision turning black and my knees feel weak.  Hence, I am almost always -- a useless body when it comes to this.  I once almost fainted once when my dog’s toe nail bled after having it cut at the groomers.  I excused myself and sat down pretending I was tired but the truth was that if I had not done so, I would have probably collapsed right there and then.

You can probably imagine how anxious I become whenever Janina has her surgeries.  When she had her craniotomy, I was a wreck before the procedure but by God’s grace, I was surprisingly calm and composed throughout the procedure as well as the recovery period.  Although I had a little difficulty with dressing the wounds and staring at the staples, her wounds did cause me as much anxiety as I had expected.

I was somehow hoping it would be the same for me when she had her syndactyly release but it was not so.   The procedure lasted for about 5 hours.  According to her doctor, it only took them 30 minutes to release the fingers.  The sewing process however took a while.  Because of the fusing, it was necessary for the doctors to get skin grafts from her groin.  So when Janina came out of the OR, her hands were bandaged up to her arms (to minimize movement) and she had stitches in the groin area as well.  Initially, I was okay with what I saw.  The wounds were covered (except for the tips of her fingers) so it wasn’t really that gory.  But when all our family had left and it was just the three of us left in the hospital room, I suddenly felt so sorry for everything our little girl had to go through.  There I was crying beside her, asking myself if we had done the right thing.  Deep in my heart I knew we did, but I couldn’t bear to see her go through it.

Two weeks after the surgery, the doctors removed the bandages and exposed her hand – fingers and stitches galore.  My eldest sister helped the yaya (nanny) remove the bandages so I was spared from the initial sight.  Janina herself seemed to be surprised at how her hands looked because they say she cried immediately after seeing her hands.  But after the initial shock, you could see that she would carefully look at them, inspecting them and trying to see how they work.

Kids are far more resilient than we think because while the stitches have yet to fall off, she is already starting to use them without any fear or trepidation.  Sometimes I get scared that she might feel pain but that doesn’t seem to bother her at all.  We really are blessed to have such a determined and brave young girl – I have a lot to learn from her still.

Her big brother did not like seeing Janina’s hands right after the bandages were removed.  He didn’t want to go near her at first but now, he states matter-of-factly that that Janina has wounds on her hands and that she’s “kawawa” (pitiful).  As for me, I try to be brave but sometimes I take a hard look at her hands and start feeling weak in the knees once again.  I can’t imagine how other mothers go through this but I realize that we really don’t have much of a choice.  I only rest in the fact that it doesn’t seem to bother my daughter so it shouldn’t bother me as well.  If she can handle it, why can’t i?  Like I said, I have a lot to learn from my daughter.  No wonder she has come to bless our lives.

So while we are still in the healing process, my daughter is teaching me each day to be brave.  I can’t wait for the time when her hands are completely healed and I can start teaching her to play the piano.  I am excited at the thought of working on craft projects together – I already have so much lined up for us to do!

According to the doctor, complete healing would take about 2 months (if I remember him correctly).  On the 4th month, we can schedule the second stage of the syndactyly release so that she can have all 5 digits.  For now, we need to take things one step at a time.  I know that with God’s grace, we’ll be able to handle it. 
A sample "Finished Product" of a completed syndactyly release


  1. you're one brave little girl, janina! :)

  2. Hang in there, honey. You will be AMAZED at all the things she'll be able to do!!! But, yes, it is hard on the parents sometimes too. She really does look like she's doing great though. ((hugs))

  3. I honor you, Pittipat, for being a strong and brave mother to Janina. It is really by God's grace that you continuously show poise and gentleness in the midst of these challenging times. But as I was looking at Janina's pictures, her aura is filled with so much love from you. Janina is very very blessed to have you as her mother. I feel that God gave you Janina because you will love her just the same for whoever she is. And I can see it so concretely in Janina's eyes. God bless you always, Pittipat and Janina. I know God will be blessing you even more.

  4. Your family is so blessed for having Janina. I commend you for being one strong & unified family in dealing with all the challenges you are facing. Keep it up. Me and my family will continue to pray for you. Take care always. :)

  5. I salute you sis! and how brave your daughter! you are an inspiration

  6. This is an inspiration to all sis. Thank you for sharing to us your fears and anxiety. It actually showed how brave you are to face this.

  7. Oh wow Janina is so brave! Good to know her operation went well =) God bless!