Why? Why is it so hard for doctors to listen to us? Why must we repeatedly complain that something isn’t quite right? Who really knows the patient’s body best? The doctor? Ha! I don’t think so. It’s the patient.

I know. I’m doing what I do best…stirring the pot. But that’s how I was raised. A doctor is not God. A doctor is merely a trained professional. Like, um, a body mechanic. However I spend everyday breathing and walk in this particular body which makes me this body’s expert.

Now let’s look at a newborn baby. A baby is completely helpless and not capable of telling us what’s wrong. As parents we run down a list of possibilities. Are you hungry? wet? is it gas? We quickly become attuned to the variations of our baby’s cries and know what they need. We even know when certain milestones should be met and haven’t been. In this case, the parent becomes the expert.

So, why did it take nearly 5 months for the pediatrician to see the light?

My niece, Brooke, still has a very rough road ahead. In January, she was admitted to the hospital and underwent a battery of tests. A presacral mass was discovered on Brooke’s spine as well as multiple lipomas. The masses are blocking her rectum and inhibiting her ability to have a bowel movement. Most recently, Brooke was diagnosed with a chromosome 7 deletion syndrome and reflux. At 8 months old she has great difficulty holding her head up, doesn’t sit up or eat baby food.

We do have cause to celebrate though. Due to recent physical therapy, Brooke has just started rolling over, making eye contact and has found her hands. This is huge!

The pediatric surgeon in Albany originally indicated that surgery would be scheduled in early April to remove the masses. Since then the surgeon has decided to take a wait and see approach. At least that’s what the studies he read recommended.

That’s right. Studies. As you can imagine it didn’t go over very well. Can you say second opinion? Um, now.

This weekend, they’ll be staying with me while they have a pediatric surgeon consult at Childrens Hospital in Boston. Let’s all cross our fingers.

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