Friday, April 16, 2010

Bravery Part 2

Seven years, ten months, and nine days ago, our first child was born.  He was perfect in every way, ten fingers, ten toes, bright blue eyes.  The day after he was born, my wife asked the nurse why he had a bright pink spot on his face.  It didn’t seem like a bruise or an injury from his birth.  The nurse said “Oh that’s his beauty mark.”

One of our pediatrician’s colleagues came to do the wellness check up.  He explained to us that our beautiful son had a port wine stain birthmark.  The mark covered his right cheek, temple and part of his upper lip. 

Our pediatrician, at our son’s two week check up, told us that the birthmark could be a symptom of Sturge-Weber Syndrome.  This syndrome involves the growth of extra blood vessels around the brain, which could cause developmental problems and along the ophthalmic branch of the trigeminal nerve, which could cause eye problems, specifically glaucoma.  Sturge-Weber Syndrome is usually indicated when the birthmark involves the upper eyelid and forehead.  Since our son’s birthmark did not involve that area, the doctor was hopeful that he did not have this.

This began a long series of visits with various specialists in different fields.  We met with a geneticist with the University of Maryland.  He examined our son and ruled out Sturge-Weber based on the location and coverage of the birthmark.  It was a huge relief to hear those words.

We saw a pediatric ophthalmologist to determine if there was any possibility of glaucoma.  Most people older than 30 have had a glaucoma test.  You know the one where they blast a puff of air into your eye to test the pressure.  When a child is very young, it is impossible to do this while the kids is conscious, so they can only do it under sedation in a hospital operating room.  Our baby was much too young for that so the doctor could only check his eyes with special lenses.

The next doctor we met was Dr. Bernard Cohen of Johns Hopkins.  Dr Cohen is one of the best doctors that I ever known.  He immediately reassured us that everything was going to be okay with our son.  Dr. Cohen explained that without treatment the birthmark, over time, would hypertrophy, or become thicker and harder due to the increased blood flow to the area.  This could cause issues with his vision, breathing and speech, because of the proximity to our son’s eye, nose and mouth.  He described how the use of a pumped dye laser can reduce the appearance of and prevent future complications resulting from the birthmark.  Dr. Cohen explained that it is not an immediate improvement but it is a result of repeated treatments at regular intervals that could start as soon as our son was six months old. 

Dr. Cohen explained everything thoroughly.  He explained in it in biological and medical terms that my wife could relate to.  He spoke of varying the wavelength and pulse duration and how that would effect the blood vessels, which is what I could understand.  And he spoke to us as parents.  It was still a scary prospect, subjecting your child to a being shot with a laser in the face.

Shortly after our son turned six months old, we went for the first treatment.  Dr. Cohen and his wonderful staff walked us through the entire procedure before they did anything.  Dr. Cohen actually allowed me to experience what the laser felt like on anesthetized skin and on bare skin.  On bare skin it felt like taking a rubber band, like the ones they used to put on newspapers, pulling it back all the way and snapping it on your skin.  On the anesthetized skin, it felt like a someone flicking you with their finger.  Dr. Cohen explained that once they started everything would go very quickly, so they could complete the procedure and have our son in our arms again in less than 5 minutes, the actual procedure itself will take less than 2 minutes.  They do this so the child is not put under too much stress and get them back in the warm arms of their parents as quickly as possible.

I didn’t believe it until I saw it happen.  Dr. Cohen and his staff moved at lightning speed, 180 laser pulses in 180 seconds and our son was back in our arms.  He cried for a minute and then was back to normal.  There was no residual pain.  You could touch his cheek and it was like nothing had happened.  You could see the slight swelling and bruising caused by the bursting of the irregular capillaries, but after the procedure there was no pain.  We had to repeat this every three months for about five years.

Our son completed his 23rd treatment today.  At almost 8 years old, he is well aware of what is happening and the reasons why he has it done.  He understands and accepts that this is something that is for his health, but he is still a little anxious the day before.  He hops right up on the table, holds my hand and doesn’t even flinch. 

I am astonished every time at his courage and his will power.  I know there are people and children out there that have to face much greater challenges and pain, and my heart truly does go out to them, but I do not ever experience that first hand like I do the treatment of my son.  So when I think of bravery, I think of my 7 year old boy hopping up on the examination table knowing that he is going to get snapped in the face 100+ times.  I think of his happy, confident smile.  I feel his hand tighten around my fingers and the return of that smile when it is over.

Our son is at the point now where treatments are 6 months to a year apart.  His birthmark is nearly invisible now.  His next treatment will probably be his last for several years.  He may have to continue maintenance treatments later in his teens or older to get some of the spots closer to the eye lid that are difficult to get to, but that is something that only time will tell. 

1 comment:

  1. Henry,
    This was an incredible post. I remember talking with you about your son's condition years ago when we worked together. I'm glad to hear everything worked out so well!