Don't Second Guess Yourself

A Mother's Love

I have been a patient advocate for over 18 years.  Starting when my son died 20 years ago but then I had another child 19 years ago and another very premature son 18 years ago.  I became Matt’s advocate even before he was born when doctors told me I miscarried, I demanded a sonogram to show he was fine inside of me, and my skills strengthened when I gave birth to matt 4 months early.  I spent almost 5 months in neonatal ICU and learned, from the caring nurses, what questions I should ask and how to be heard. 

In 2005 a group of people led by PULSE of NY started gathering to develop information we called Family Centered Patient Advocacy and we wrote a book on how family members can become patient safety advocates.  Since then another group of doctors a pharmacist, social worker and lay people developed a curriculum to follow the book.  To date we have trained about 250 people mostly small groups on and near Long Island to partner with the medical team for the best possible outcome in their medical treatment.  I have put in over 600 bedside advocate hours in the last few years and continue learning from people I am supposed to be teaching.  It is a never ending “learn fest” when it comes to what can happen, or go wrong in a hospital. 

70% of bad outcomes come from poor communication.  It’s crucial for patients and their loved ones who care for them to understand the care plan, treatment and medical condition that is being diagnosed or treated.   

When my dear friend called to tell me something was wrong with her son, his nails were blue and he was slumped over, she said, it was my first reaction to say “If you think something is wrong, than it is”.  She was right.  As he lay in the emergency room late that night, long after I left, she asked someone to take his temperature.  The nurse could not awaken him.  Two more times he could not be awoken and finally the next morning he was intubated and there he stays, days later, in ICU with his mom lovingly watching over him struggling with staff to get answers.

There is no question, if she did not get him to the hospital that night, he would not be here today.  They would have all gone to sleep and there would have been no one to try to awaken him. Yes, it was a mothers actions that saved her child.