In a mere instant, again, life will never be the same.
I was completely blindsided in a GI appointment with Oli today. We have always known that Oli’s injury to her intestines in West Texas was catastrophic. The probability of nerve damage caused by lack of blood flow was high. The GI doctor likened it to a victim of drowning. He said “you know when you have a drowning victim, afterwards in the ICU they do an MRI and the brain looks normal? It looks normal but their brain does not work anymore. The person suffers from severe damage. That is probably what has happened to Oli’s gut. The nerves in there have all been damaged. I don’t want to be negative, but in my heart, I don’t think this is something that will get better or can be fixed.”
When I mentioned the topic of next steps and how we can go about getting her listed for an organ transplant there was a look on his face that stopped my world in an instant. That look conveyed something that I had honestly never even considered.
Oh, how naïve I am about the way of things.
The doctor didn’t say it in so many words, more of a fumbling around about way saying something like “she’ll have to go to Houston, and they will have to evaluate her to see if she even could be listed”.
Could even be listed? Why couldn’t she be listed?
I know that sounds benign but there was a look on his face and a look in his eye and a failure to meet my bewildered gaze that told me all that I needed to know. Something that I had never even considered. There was an incredibly good possibility that my sweet girl was never going to be listed because she had the unfortunate disadvantage of being born with a disability.
He walked out of the room and I sat in silence for a moment stunned, as the tears began pouring down my face. How could they just NOT help her? How could they let this beautiful girl, with the most incredible smile and disposition, just die?
I immediately jumped online to prove to myself that this was not a thing. There was no way that this could be true. People with disabilities are people. First and foremost. They have a right to medical treatment just like everyone else. I must have misunderstood.
I did not.
I read article after article titled:
“Push is on for states to ban organ transplant discrimination”- CBS news
“Organ transplant discrimination against people with disabilities”- National council on Disability
“Equal access to organ transplant for people with disabilities”-National Institutes of Health
“They say their children are being denied transplants because of their disabilities”- CBS news
“People with autism, intellectual disabilities fight bias in transplants”- The Washington Post
And on and on…
There are so many out there. That was just a simple Google search. There are so many families out there with stories about how their child died because the transplant center refused to list them. Stories about how families had the law changed in their state so they could not refuse to transplant the child due to a disability.
Did you know that a study in 2008 found that 85% of transplant hospitals considered a child’s nerurodevelopmental delay when considering their eligibility to be listed on an organ transplant list? I would like to say that in the 10+ years this has changed but sadly, for the most part, it has not. A research paper by the National Council on Disability from 2019 titled “Organ transplants and Discrimination against People with Disabilities” states:
“People with disabilities are often denied equal access to organ transplants solely on the basis of their disability. These denials are frequently based on discriminatory assumptions that the lives of
people with disabilities are of poorer quality than those of people without disabilities, and on
misperceptions about the ability of people with disabilities to comply with postoperative care.”
And then I googled “Do special needs people get denied organ transplants in Texas”.
That is when I saw a glimmer of light. I found House Bill (HB) 119 that was passed in September 2021 during the 87th Legislature that prohibits organ transplant recipient discrimination based on certain disabilities. It states “When determining whether an individual’s disability is medically significant to the organ transplant, a health care provider may not consider the individual’s inability to independently comply with post-transplant medical requirements when the individual has a known disability and the necessary support system to assist them in reasonably complying with the requirements.”
House bill or not I am prepared to have to fight for her to have this opportunity.
Even though under the Americans with Disabilities Act and the Rehabilitation Act the practice of denying people organs because of their disability is illegal, it is up to the transplant physicians to evaluate these patients. I promise you, there are ways around that and reasons they can list why they would not be good candidates.
Coincidentally, (if you believe in coincidences) I am in the business of organ donation. I currently work for an Organ Procurement Organization (OPO) and have for 4 1/2 years now. I completely understand the states concern for maximizing these gifts and making sure that the person receiving them can comply with all treatment and make sure that these donors’ gifts do not go to waste. I’ve watched families of donors rejoice at the thought of their loved one’s organs going to save someone else’s life. I have seen the peace that it can bring. I’ve also seen families agonize over the thought of someone taking an organ out of their loved one’s body after they have passed and placing it into someone else. These families are caught off guard when they realize that they signed up to be an organ donor. I have also seen about 90% of those families walk away with their minds completely changed and hope and peace in their hearts when they realize what a heroic and selfless decision their loved ones made. Organ donation seems to be a hot topic and not everyone agrees. And not everyone has to. It is an individual decision and I am not here to tell you what is right for you or your family. What I am here to tell you is that my daughter has every right to have an opportunity to receive one of these precious gifts because she is a person.
According to the Texas House bill she must have “the necessary support system to assist them in reasonably complying with the requirements.” And she does. Because Oli has me. Forever. Oli has me to keep up with her appointments and her meds and all the things that I have done for her entire life. And I am committed to continue doing these things until there is no more breath left in my lungs or blood flowing through my veins. The day that she was born I looked into her sightless eyes, and I made a promise to do everything that I can to help her. I promised to be her eyes and her voice and her legs and anything else that I can do and give her if she needs it. I will not stop now. I will not take no for an answer because she is worth something and her life is worth something and she matters.
My Oli matters.
I'm fine, but my mommy has issues! 