Cait's Story

Like most teens, at the age of 16, my daughter Caitlyn got her driver’s license.  Excited about passing the test, she was asked at the DMV to check a box, “yes or no” regarding organ donation.  Armed with her new freedom and wanting to be a good human being, she checked yes.  Like most 16-year-olds, she probably would have agreed to anything that day.  As the parents of a minor, neither my husband nor I were ever asked to sign anything to state we understood organ donation.  Caitlyn was not educated on what this innocent box-checking meant, what constitutes organ donation, and that, ultimately, it is a legal document recognized as your last will and testament at the time of your death. Our Nightmare Began… New Year's Day 2024 We are all together celebrating the beginning of the new year. Due to work schedules, we ate dinner early in the afternoon with family and friends. Caitlyn, 23 decided to make herself a late night snack after everyone had gone to bed. We were awakened by Caitlyn running into our bedroom in a panic. Within seconds I realized she was choking. I turned her to perform the Heimlich when she collapsed in my arms. She was in Cardiac Pulmonary Arrest. I began CPR and was able to remove the obstruction from her throat. I continued CPR until paramedics arrived approximately 3 minutes later and she was rushed to the ER. My husband and I were brought into the trauma room and watched her go through three rounds of Super Code. Just as the doctor was about to pronounce her time of death, a nurse found a pulse.  Caitlyn was intubated and transferred to the ICU. This is where our wait began to determine how much brain damage occurred and if Caitlyn would pull through these horrific events. For the first 24 hours, Caitlyn's reflexes were intact and she was breathing over the vent. All her lab work was in normal range and the cardiologist cleared her of any heart damage. Unfortunately, her CT scan showed that she had brain swelling. Her physicians then informed us due to her age and good health her prognosis was unknown but could range from memory loss to brain death. On the third day around 2:30 am, she spiked a fever and was rushed for an emergency CT scan which ended up showing more brain swelling. We were led to believe that this event caused her to be brain-dead and to contact family and friends only to be told several hours later that she was NOT brain-dead and would need more testing. Just when we thought it couldn’t get any worse……. In the afternoon of the third day while in a period of hopelessness, we were informed that the organ donation company was there to meet with us and some of the ICU staff that were caring for Caitlyn at that time. We met with two representatives, an RN, and a social worker. The conversation started that my husband and I were open to life-saving organ donation as Caitlyn had wished. We then stated that Caitlyn would especially not want her eyes to be taken at which point the RN stated that we were being disrespectful of Caitlyn’s wishes. The registered nurse from the organ donation company informed us that since Caitlyn was not technically brain dead she would have to be assisted to have a cardiac death and we would need to be present. Her heart would have to stop for 5 minutes with the hope that her heart would not restart on its own (as young and healthy ones can).  This would provide Caitlyn with a time of death.  Then they would restart her heart and bring her into the OR for harvesting.  The Nurse stated this whole list of procedures in even more detail while smiling at us like we were discussing the purchase of a new car or something equally exciting.  Her companion sat on the floor and watched along as if it was some fun event.  I could not believe what I was hearing!  I erupted at the audacity of what I was hearing and explained I had already watched Caitlyn die on the floor of my home AND essentially die two other times in the hospital. The Nurse was still smiling her Cheshire Cat grin.  She looked at me and said, “Well, at the end of the day, she did sign on the dotted line”.  At that point I told them to get the hell out, we were done! After this meeting, the family and the ICU staff were horrified at the information given and the way it was presented. We were unaware that they can take ALL of a person once they are deceased if they did not make organ donation selections on the registry. Just checking yes means they make the final decision as to what is taken. Following this meeting, we then went on days without the physicians being able to order EEGs, MRIs, or CT scans to assess if any healing or improvement was occurring because the organ donation company was following up daily.  The Nurse and others from the company came in daily and were told to leave by the ICU nursing staff.  We felt like Caitlyn had vultures flying over her hospital bed, which caused increased mental strain and damage when our world was at its darkest.  This was my baby, my world and I felt like they were stealing her and stealing my family’s right to do everything possible to save her. The donation company says they don’t prevent the donor from receiving care, they did.  They prevented Caitlyn from medical testing.    This company claims Caitlyn could have changed her decision at any time.  Let’s go through how to remove yourself from the organ registry, which is a three-step process:   1. Go online and remove yourself from donor registry  2. Go to the Tax ID office and remove it there  3. Go back to DMV and remove yourself there AND get a new driver's license.  That’s not quite as easy as just checking the box, which is how we got here in the first place.   At this point after what we had been through our daughter would not have wanted to put us through this agony nor wanted to donate her entire body. As her POA my only saving grace was to contact hospice. The hospice staff came to the hospital to meet with us and they were very empathetic about the Florida laws and knowledgeable of these companies' tactics. They explained that due to Florida law, our daughter could not go to a hospice facility because they would need to notify the organ donation company one hour before removing her vent and would be told to send her immediately by ambulance to the nearest hospital. Our only option was to bring her home on hospice. The next morning we were informed that the hospital administration could do nothing to help us. We were told that a new team from the organ donation company wanted to speak to us. This time the meeting consisted of immediate family, ICU staff and the hospice team. Once they understood I was fighting for what my daughter wanted, they finally backed down from wanting all of her. They agreed that all of the testing that had been placed on hold should move forward and they would only begin getting blood samples. At that point all we wanted was time and testing to be comfortable with our decision and we were denied. In less than one hour without any of the promised imagining, she was declared brain dead. I have since heard that many other families have gone through this same horror. This is not just Caitlyn’s story.