Tuesday, December 16, 2014

Kayli is not guaranteed medical treatments, as you are.

We were recently on a family retreat in KY (about 8 hours from home), when Kayli got seriously ill.  On our long way home, we bagged her, gave her nebs while in the vehicle, and administered other life saving methods while struggling to get her back to her "home hospital", rather than stopping at a hospital on the way home.  For those of you wondering why it was so important that Kayli made it back to her home hospital, we will explain why it is so much more than just being "comfortable" at home settings. Unfortunately, for many families (including ours) it has been quite the challenge to find dr's, nurses, and hospitals who agree to treating kiddos with a trisomy diagnosis (Kayli has Trisomy 18). We struggled against the dr's pressuring us to terminate her pregnancy, even as with every breathe we said we intend on carrying her as far as she will go. It is our faith that God is the only one who knows of Kayli's term here on earth. Kayli is not a loaf of bread, she does not have an expiration date. We have fought since Kayli was in the womb, to get her unbiased medical treatments. At many hospitals, Kayli has been turned away, refused treatments, and we were even told, "she needs to go home and die!". When leaving the state, Kayli's pediatrician has coached us on what to do in the event she gets sick out of state, because it is a known fact that the majority of dr's and hospital across our nation will refuse to care for Kayli, solely based on the trisomy diagnosis she carries. As ridiculous as it sounds, even in this day and age, Kayli has had many DNR's (Do Not Resusitate) placed on her, and in her chart, without our consent, nor knowledge, solely based on the trisomy diagnosis (not based on her as an individual). Kayli has been denied simple things like antibiotics, oxygen, a feeding tube, and even ortho services, simple because she carries an extra chromosome. Imagine if you will, going to the dr or hospital, looking for medical support, and being told they won't give you any antibiotics, because they don't think you will live long anyways (even if you are in your 30's!). Absurd, right?! We want everyone to be aware of the bias, in hopes that one day it will all change! All God's children should be treated as gifts, not as a tragic pregnancy! We've asked the dr's who've refused to treat (or even examine) Kayli, how they can refuse to care for her, when they've taken the dr's oath to do no harm (which in our opinion means not making our daughter suffer through an illness that is easily treated). Their response has been "we will not prolong her death".  What many dr's don't seem to understand, is that we want them to help us give Kayli the best chance for an amazing life, no matter how long she is with us! We want to enjoy her, love her, and care for her while she IS here with us! She is a member of our family, not a statistic. We ask that the medical professionals support our family care plan, whether it is of their personal opinion or not. We hire them solely for their medical opinion. Only God knows His plan for Kayli (and others like her). We have always asked that the medical professionals respect our parental rights, our parental love. We are Kayli's parents, the same as we are our boys' parents. Just as we ask of medical treatments for our boys (each with rare medical conditions as well), we ask for our daughter. We will live with our decisions, every day, for the rest of our lives, even while the dr's end their work day and go home to their own family. We don't want our forever memories to be that something more could have been done to make Kayli's life more pleasurable while still living, yet professionals refused to help her. That would bring anger and resentment, rather than the comfort that the neglectful professionals claim we would have. It has taken us years to find them, but we are proud to say that Kayli's "home hospital" has NEVER focused on the overcasting "doom" of the trisomy diagnosis, but has rallied with us to support and lift Kayli up as a patient, and as a beloved human being. That, dear friends and supporters, is why it was so very important that Kayli made it back to her home hospital, even when she was in such dire need of life saving medical treatments. Unfortunately, Kayli is never guaranteed to be medically treated, as you and your family most certainly are. 
You can follow Kayli's story on fb, at Kayli's Krusade, https://www.facebook.com/KaylisKrusade?hc_location=timeline


  1. Your story means a lot to me. I have a lot of disabilities from a brain injury at birth. I get treated like you described at our local hospital, they treat me like I'm faking being sick. I can't fake it, when I get, sick I can die without the proper help.

    The local hospital is about 30 mins away, and the home hospital as you call it, is 3 and a half hours away.

    We need to educate the local hospitals about people like us out there so we all can get care and treatment with respect and dignity.

    Best of luck, and may God Bless you and your family. He knows what's next for us in our lives.

  2. Kayli you are a miracle, adorable little angel sent from above. I am so proud of your parents too.. Their love, dedication, determination is very challenging. Praying for you everyday sweet little angel.