Blaming hurts

When our daughter Ashley was diagnosed with a very serious pneumonia , Pneumonitis (prior to her SCID diagnosis), she was very, very sick and had been for years.  Despite this, we were continually brushed aside and "assured" that everything was "just fne".  We knew it was not right, we knew we should not believe it or buy into it but, we didn't know what to do.  After all, they WERE doctors, right?

So, with Ashley resting in the hospital bed on oxygen and under heavy drugs to fight the infection and help with the pain of the bronchoscopy/thoracoscopy she had just endured I decided to flip channels and doze...It was at this time that a young woman came into the room and said that she had some questions for me.  After DAYS of nothing but questions, paperwork, names of meds. and illnesses I couldn't pronounce etc...this didn't alarm me.  I agreed and she sat down across from me.  It was then that I noticed that her tag read "Social Worker -CPS" .  WHAT?!?!?!?!?!  When I inquired about what that meant she informed me that my husband and myself were being investigated for neglect!  I said " Are you serious?  After all of the doctors we have seen, the meds. we have given her, the foods we have tried, the foods we have discontinued, the nights we stayed up rocking her, the endless worry..Neglect???"  Apparently, due to all of her illnesses, her PMD had thought that we were either a) making her sick by not giving her meds. or b) not feeding her appropriately, or something of that nature.  We were then informed that the social worker would conduct an interview with us, Ashley's doctors and nurses at the hospital and then contact the PMD.  If the PMD wanted to pursue a case, we would have to allow them to investigate our home, financial information, etc...If not, we'd never hear from them again.  Being that we had nothing to hide - we agreed to the questioning.  I was crying the entire time and my husband was so angry at the accusations.  To make along story short, the PMD dropped the case and after her diagnosis came down (the SCID) profusely apologized to us for the suscpion as she then knew why Ashley had the illnesses she did.  And, probably felt guilty for NOT diagnosing her herself!

Our story ended well but some do not - Parents are unfairly subjected to home investigations and worse.  Some  get accused of Munchausen Syndrome.....

The bottom line is, if you find yourself in this situation - do not panic.  Likely, the doctor's are just trying to protect themselves, should Munchausen be a part of the picture.  Let's face it - there are times the involvement of CPS is a GOOD thing, unfortunately.  Here is what to do:

1.  Answer the questions honestly....You are not a criminal, you have done nothing wrong so don't hide anything.  Give thoughtful, appropriate answers.

2.  Do not let your emotions get the better of you.  It's easy to feel hurt, angry, embarrased but do not let that take over.  Breathe deep and just focus on what is asked.

3.  You DO have the right to have an attorney present.

4.  Don't be afraid to ask questions of your own -in a non-combative way

5.  If you feel "attacked", do not be afraid to request the presence of a nurse or doctor while you are being questioned.

6.  Don't be afraid to speak to your child's docotr's to try and find out why you were put in that situation.

7.  If you're offered assistance, don't turn it down out of pride.  If it can help you or your child - take it!  There is nothing wrong with that.

I hope that the experience I wrote about has been helpful to you. If we can, through this story, prevent even one child and parent from experienceing the pain and helplessness that we experienced, well then, our day will be made. Thanks for reading! Jenn

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Joan Fleitas, Ed.D., R.N.
Associate Professor of Nursing, Lehman College, CUNY
Bronx, New York 10468

Published: August 2, 2007