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Thursday, June 12, 2014

Beware of Slow Care, by Brad Smith

We thought they were helping.  Every time we took our daughter Faith to the hospital for her illness, they would nurse her back to health.  Faith has Trisomy 18 (Edwards Syndrome).  Trisomy 21 is Downs Syndrome.  Trisomy 18 is much harsher with 90% of these children not reaching their first birthday.  At this time, Faith was 2 ½ years old and began to have some serious illnesses that almost took her life several times.  The hospital did some basic things to help her get over the illness and we thought that they were giving her the necessary care any other child would receive.  However when I had an opportunity to ask Rick Santorum for some advice since his little girl Bella also has Trisomy 18,  Rick gave me advice that I had never heard from the mouth of a single doctor.  I was somewhat skeptical when he first shared the list of things that we should be doing for Faith, but he convinced me with some very straight forward and honest comments.  He said if we didn’t do this that we were going to lose our daughter...now you know how he convinced me.


After receiving this list of items, I went to visit my wife, Jesi, and Faith in the hospital during my lunch later that day.  When we showed this list to the doctors, they told us that NOBODY does this. Huh?  We pushed to get the doctors to help us, but after a third hospital visit and a near death experience for Faith caused by the same problem, we finally figured out that they would not treat her.  I know, I know…why did we go back to them?  Well, you expect your doctors to help you and parents in our situation often trust, but need to realize that trust MUST be earned (as we have learned).

This is when we learned about “Slow Code,” although we had not discovered this term yet.  Because of our experience with multiple hospitals, Jesi and I began a journey to get the law changed in Michigan.  During our journey, Jesi researched medical journals on Trisomy 18 which is when we learned the term Slow Code.  Slow Code is when the medical providers offer the appearance of treatment, but knowingly administer the treatment so slowly that it is useless to the patient.  This may sound crazy and like something we might make up.  We not only learned the term from their industry journals, but we experienced it.  There are times in a hospital where you might hear CODE BLUE for an emergency, but why is it you never hear CODE SLOW?  Hospitals hide this practice in a deceitful way so they can inflict their decision on the patient.  This is not care, but lethal neglect or intentional death which I have always termed murder.

In one article of the Journal of Perinatology, a pediatric ethics committee discussed an option of Slow Code as a possible solution in the case of an infant with poor prognosis.  CPR had been offered to the parents and was later withheld by way of a DNR placed on the patient by doctors.  The committee debated this decision, but only from the perspective that CPR should probably have never been offered in the first place.  So here we have a committee of medical “caregivers” suggesting that forms of care should not even be offered to patients based upon their value(less) judgment.  Withholding  medical care and suggestions for treatment is now the medically ethical way to handle a patient?  In the end, this particular committee decided that it is deceitful to use Slow Code.  Ya think?  The fact that this suggestion was even considered legitimate enough to be discussed is troubling.

This brings us back to our daughter Faith.  We were not even offered what we now know to be pretty basic treatment for today’s medicine.  Our daughter Faith had severe sleep apnea which most novices in sleep apnea could have determined.  She had a small jaw which was obvious to anyone with even a little experience.  Our problem, we were not even novices at this point and we had no clue.  We cornered a doctor for an hour in the doctor’s office before he finally told us that if he were in our shoes, he would go to the other hospital.  Really?  After three trips to his hospital and on the verge of a fourth, we finally had some honesty.  Our daughter needed a sleep study which showed the necessity for a Bipap (very similar to a Cpap) to help her breath at night.  When we reached the other hospital, they could not understand why we were not provided with this help for our daughter.  Faith is now 5 years old and doing things that the first group of doctors said would never be possible.  Well, they were right about one thing.  She never would have started walking or probably even have survived had we followed their advice, or lack thereof.


Brad Smith; Married for 16 years to Jesi and the proud father of 5 children living in Rochester Hills, Michigan; Save The 1 pro-life speaker, pro-life blogger, and Board Member

1 comments:

Lee said...

Faith was given to you for a reason. I believe that in my heart. God gave her to you because you were the right parents to advocate and fight for this precious little girl. Please please give her a kiss for me and let her know I think she's a superhero!