Something Every Parent Needs to Know Before You Seek Medical Care
This is like a nightmare from a science fiction novel. You bring your child to the top Children’s Hospital in your area,
a child that already has problems but right now needs treatment for a cold, only to find our that they will not treat your child’s cold because they have “terminal” issues.
As parents, we assume that when we take our kids to the hospital, they’ll treat the child to cure them or give them the best possible quality of life they can. But this is not always the case for kids with special needs.
In fact, efforts are being made that would force hospitals to disclose to the parents UPFRONT when life giving care will be withheld.
Little Faith was born with Trisomy 18 and doctors assumed that she wouldn’t live. They “pursued” a treatment of nothing, which would have led to her death if her mom had not fought for her life. Today, Faith is FIVE. Doctors were wrong, I’d say.
Faith’s mom fought for her life. And she also fought to change the law.
From Jesi’s blog:
“5 years ago Faith was born on December 23, 2008… We spent that Christmas in the hospital with specialists coming to see her. The original cardiologist came in on Christmas Day to examine her. He discovered several holes in her heart including one so large that the blood flowed through it without causing a murmur. Well, they didn’t know at the moment that Faith had Trisomy 18 so they took care of her like a little girl. It wasn’t long after this that we got her T18 diagnosis and quickly found out how the medical industry would not help her. ” story here
The Medical Good Faith Act is named after Jesi’s daughter, Faith, and is law in Michigan already. Thanks to Jesi, Michigan residents
“can now go to hospitals and request their policies on providing life saving treatments before they check into a hospital and find out later that the hospital won’t help them, or worse and have a loved one die and never find out the hospital deceived them. “
It forces hospitals to be upfront about their policies so parents can choose to use that hospital or not. Choice is always a good thing. Especially when it comes to life or death.
Jessi, found this out the hard way, when time was of the essence, that the doctors at her local hospital were not being transparent about whether they would “treat a child they believed would die anyway.”
So, instead of being transparent with the family, hospitals already have policies in place that determine what they’ll do in terminal cases. And moms do not know. They bring their kids in for help and there is no intention of helping them, except for pain management in preparation for death. Even a common cold or pneumonia that could be easily treated with antibiotics may be withheld from a child that is considered “terminal.”
“That confusion delayed the family’s decision to seek care elsewhere — a delay that nearly cost Faith her life, they said. The family looked elsewhere only after a doctor told them privately that they would be better off seeking care at another hospital, they said.”
If you have a child with special needs or any kind of long term illness, you need to know this.
Of course, this issue is infuriating and distressing to our family because of our sweet Addy. Hannah and Jonathan have been tenacious about pursuing a course of LIFE for her. The last thing a family with a special needs child needs is a labyrinth of legal wrangling and/or misinformation with their hospital to figure out what kind of care they’ll be given.
These things are good to know and to inform your friends about.
This information might save a family from heartache after the fact by allowing them to make INFORMED DECISIONS about their child’s treatment.
***You can listen to Jesi’s radio interview with Janet Mefferd here. She tells how Senator Rick Santorum’s experience with his own daughter, Bella, who has Trisomy 18 child prompted him to help, giving them life saving advice. “For those who say there are no death panels anymore, let me assure you, people are very subjectively saying who lives and dies with treatment.” ~Jesi on Janet Mefferd.
Sarah – Thanks for sharing our story so we can educate people about this serious issue. I am Faith’s dad and our story, sadly enough, is the norm and not the exception. I can recount story after story after story of others who have faced this problem.
Brad, I’m glad to be able to share. Jena and I have had countless coffee visits and she’s shared with me how frustrating and scary this journey has been for you. I never connected that this could be happening to our Addy. Unfortunately, it seems like, in some respects, it has been as far as quality of life issues that could have been easily addressed.
Is there anything that parents in our area can do to find this information out before hand? Is it just a matter of asking for your hospital’s ethics policies or is it more complicated?
Our experience has shown us that it is more complicated. Until you see it with your own eyes, you may not believe it, but to me, there is clearly an agenda behind it. Not all hospitals behave this way, but most in our area have which is why we took the step of getting a law passed in Michigan. I believe that there is a eugenics movement which has never gone away and just changed strategy. If you study history a bit, you begin to see the exact same arguments that Jesi and I have heard from medical professionals which were used by German medical professionals. The reality is, many of the German eugenics ideas originated in America and they simply implemented them more effectively than their American counterparts. If you are interested in learning more about this, I recommend a new documentary by a young filmmaker called Labeled. You can see the trailer and order the film at http://www.labeledthemovie.com and learn quite a bit of the eugenics history. They did an amazing job showing the origins and historical ties to even early cultures. I think the nature of evil is to hide from the light which is why we took the approach of transparency in order to shine a light on this behavior. I don’t think it will end it, but it can help. In large part, their philosophy has been to implore their eugenics beliefs through abortion and target the unwanted people in the womb. For example, Downs Syndrome children are aborted at a 90% rate in America though most of these people can even survive decades as “contributors.” What does this mean for people who will never “contribute?”
Curious to know,,,, Was this initial hospital a children’s hospital?
You know, I’m not sure. Jena Shea may be able to answer that as Jesi is her sister. 🙂 Hope you are well. 🙂
Yes, it was a children’s hospital.