Thursday, December 1, 2011

Holding My Breath

Every three months I hold my breath.  Hoping for the best but frozen by the thought of the worst.  I squeeze Sam a little bit tighter, rock him a little bit longer, tell him I love him a little bit louder.  I fight my anxiety and tell the negative voice inside my head to shut up!

You see Sam has a genetic disorder called Beckwith Wiedemann Syndrome (BWS).  BWS is a congenital growth disorder.  We are thankful that on the spectrum of disorders, this one will likely have a minimal impact on Sam's life.  In fact, we wouldn't have even known he had it if his backup pediatrician didn't suggest we look further into his large tongue.

 What we and other doctors chalked up to a big tongue, she saw as a potential symptom, warning sign.  And thank God she did.

Sam's symptoms of BWS are mild.  He has almost completely grown into his tongue.  His extremeties are evening out -- it is common for children with BWS to have one side of their body grow larger in either width or length -- makes for fun and expensive shoe shopping.  His umbilical hernia is shrinking (and can be corrected with surgery for cosmetic reasons if we choose.) We are thankful that BWS is not associated with mental or physical delays and though Sam started talking on the later side, now that he is talking, it is clear that his tongue has not had an impact on his speech ability.

But, the most concerning issue associated with BWS is an increased chance of certain cancerous tumors that can show up in his kidneys and liver.  The types of cancers Sam is at risk for are extremely treatable and have high survival rates if caught early.  So until he is about eight years old Sam gets quarterly abdominal ultrasounds and blood work to rule out the possibility of these tumors.

So every three months I become a bundle of nerves and anxious energy.  Every three months I am reminded that despite my best efforts I cannot protect my child from everything.  Every three months I panic that this might be the time when the doctor walks in and says "we found something on the ultrasound."

But today I get to let out my breath.  To go home and celebrate that my baby is fine.  Sam's ultrasound was clear and I get to put this out of my mind . . .until March.

1 comment:

  1. My son was just diagnosed with BWS, this was very comforting to read since this is all new to me. It's very nerve racking to hear the word cancer in any situation. So far he is doing great but I think I'll be shaking and biting my nails for the next ultra sound. Do you have your son on any special diet or do anything to keep the risk of cancer down?