The Beginning Advocacy

Healthcare Advocacy is a topic that is very near and dear to my heart.  Back in the late 1990's my life changed in a matter of seconds when my son was born with Congenital Diaphragmatic Hernia (CDH) 

Moments after he was born, I recall the Labor and Delivery Staff informing me that my son was having problems breathing and he had to be medivac to the local Children's Medical Center to be placed onto a breathing machine.  At the time, the hospital where I gave birth at wasn't adequately equipped for an infant medical emergency.  

Having to remain in the hospital 24 hours after giving birth was such a blur to me, seeing all the new expecting parents leave the hospital with their newborn in their arms and here I was being wheeled out by a patient transporter who had the expression on her face of absolute horror and not knowing what to say.

The next morning I headed to the hospital to meet my son for the first time, here he was this big jumbo baby who at the time was weighing 12 pounds of fluid because his kidneys weren't operating properly at that time, and seeing him next to these premises that weighed no more than 4 pounds just blown my mind.  I recall the Medical  am wanting to sit down and meet with me about the next steps for my sons future.  They told me that his outlook on life was extremely slim and that they only wanted to keep him of life support for an additional 24 hours before pulling the plug.

I remember having a social worker, a priest, the doctor and the charge nurse all rambling different objectives to me, but all I could think of is why did this happen.  Again, a blur.  That evening while leaving the hospital, I kept looking around and seeing families together, laughing, playing, eating and being humble. That's when it really hit me hard, that I didn't know what the future would hold for my little family.

At 2 am in the morning I woke up suddenly with the urge of wanting to call the hospital to check in on how my son was doing.  The nurse answered the phone with excitement and said I wanted to call you but didn't want to wake you, his kidneys are functioning!  I was beyond excited.  At that moment I woke my parents up and told them the wonderful news, we all decided to get up and go see the Little Miracle.

When we saw him, he was still towering over the other infants in he ICU, but half the size that he was before.  I sat their and wondered, what if I didn't ask for extra time with him, would've they just pulled the plug?   What if ....  

And this is where my future begun ....