Syndactyly: Sydney's unique hands

~For you formed my inward parts; you knitted me together in my mother's womb. I praise you, for I am fearfully and wonderfully made. Wonderful are your works; my soul knows it very well. My frame was not hidden from you, when I was being made in secret, intricately woven in the depths of the earth. Your eyes saw my unformed substance; in your book were written, every one of them, the days that were formed for me, when as yet there was none of them. ~ Psalm 139:13-16

And now we embark on our next journey with Sydney...her hands.  When Blake and I decided to start a family, we knew there was a risk for our child to have syndactyly since Blake was born with the same condition.  Syndactyly is a condition where two or more fingers or toes are joined and occurs only 1 in 2,000.  Blake was born with syndactyly on both hands.  He had surgeries to separate the fingers as a baby and now has 5 working fingers on both hands.  When we first found out we were going to have a baby, we discussed the possibility of this condition being passed on with our OB.  We opted to have a Level II ultrasound early on in the pregnancy to attempt to see.  The ultrasound technician worked hard and was able to get some pretty good shots of the hands...which showed syndactyly on both.  From what the ultrasound showed, it looked as though her middle and ring fingers were fused on both hands.  I remember the tech saying, "I have never wanted a baby to flip me the bird as bad as this one".  During this ultrasound, we were also able to find out that our baby-to-be was a girl! :)

Once the ultrasound showed the probability that Sydney had syndactyly (the doctors would not guarantee 100% that she did), so began a range of emotions and appointments.  We immediately met with a genetic counselor who drew out our family histories.  The very interesting thing (and bear with me on the logistics of this one) is that both Blake's paternal grandparents' bloodlines carry syndactyly.  How's that for genetic make-up and luck?  The genetic counselor told us that there are some rare syndromes that can be associated with syndactyly, but that since Blake was born with syndactyly and no associated conditions, the probability was low. 

The counselor set up an appointment with an orthopedic surgeon at UNC for us to meet with as a prenatal consultation.  We met with the surgeon when I was about six months pregnant.  She gave us a rundown of how she would go about the surgery.  I felt at ease with her when she said "I love working with babies".  She asked us to bring Sydney in when she turned about two months of age.  She also recommended having a late term ultrasound to check kidney and heart function as syndactyly can be associated with some abnormalities with it.  (The late term ultrasound came back fine!)

Well, now that Sydney is here, the doctor's visits can begin!  She does have exactly what we thought.  Middle and ring fingers are fused on both hands.  Her left hand does not appear to be as severe as the right.  In fact, when she holds her left hand certain ways, you can barely even tell.  By the way, her hands look almost identical to the way Blake's looked. 

Sydney's left hand

Sydney's right hand

We met with the UNC doctor recently and have a consultation set with a doctor at Duke before we decide our plan of action.  The meeting with the doctor at UNC was rather informative.  As we were huddled in the small exam room, along with two medical students, the doctor felt Sydney's fingers.  Then she said something we weren't expecting/prepared for.  A little background information first: each finger is made of three bones.  She said on the right hand she could feel all the bones for the middle finger but wasn't convinced she could feel the third bone for the ring finger (picture where your fingernail is).  We opted to have an X-ray done to try and see what bones are there. 

The X-ray technician came to take us for the X-rays and showed us his hands...he was born with syndactyly as well!  What a small world!  I have to say, for whatever reason, this helped me relax some.  The tech could not have been a nicer guy and was so patient with Sydney, but it was still really hard seeing my tiny baby laying on the X-ray table.

The orthopedic surgeon had us take a look at the X-rays.  Thank God, the X-ray showed that Sydney has all bones necessary to make two fingers on that right hand!  However, the doctor has decided that she would start with the left hand for the first surgery.  The reason for this is that the X-ray shows Sydney has an extra bone growing in between basically where your fingernails are on the left hand.  This could cause bowing of her fingers that we want to avoid. 

At this point, we are in a holding pattern.  If we decide to go with the doctor at UNC, we are looking at surgery around June.  We have another appointment set with the same surgeon in January where more X-rays will be done to see how her fingers are growing.  We are meeting with the doctor at Duke in December and are interested to hear what his plan of attack would be.  Ultimately, we want to make the best possible choice for Sydney.

Sometimes it is hard to look at her hands and think of what lies ahead.  I hate to think about Sydney being brought back to the operating room.  I hate to think about Blake and me waiting to hear the outcome.  I hate to think about the recovery following the surgeries.  However, I try to remember that we are so blessed.  Sydney is happy and healthy.  In the grand scheme of things, it could be way worse.  Ultimately, I want to document our journey for Sydney since she won't remember what her hands looked like in the beginning or what it was like to have the fingers separated. 

Here is a link to learn more about syndactyly if you're interested.

Sydney and Mom getting ready to go to UNC

Sydney and Mom in the exam room waiting for the doctor

Sydney and Dad after the X-ray- see her sticker for being a good patient? :)