NFT pediatric patient, Hannah, and her parents speak about her transplant journey during Give Blood, Share Joy blood drive.
When Hannah was eight years old, turning nine, she spent almost an entire year in the hospital. Her health issues started with concerning symptoms, such as frequent nosebleeds and easy bruising. Her stomach became alarmingly distended. Upon visiting her pediatrician, she was immediately sent to the emergency room where she underwent a great deal of lab work, an X-ray, CT scan and ultrasound. After undergoing the battery of tests, they were shocked to learn that Hannah was suffering from liver failure, along with an enlarged gall bladder and spleen.
Doctors were unsure as to why her liver was failing, but they initially believed it was due to autoimmune hepatitis, then Wilson disease, and later Cryptogenic Cirrhosis as additional tests were run. When she had adverse reactions to the treatment for autoimmune hepatitis (her initial diagnosis), they felt it was best to perform a liver biopsy to try and better understand what was causing her liver to fail. During routine pre-op procedures, a number of heart conditions were discovered, which may eventually require open heart surgery. After an inconclusive biopsy, doctors believed a liver transplant was absolutely critical.
Hannah missed almost an entire year out of school. She dreamed of returning to school, enjoying time with her loved ones, arts and crafts, movies, and playing outside with friends.
Hannah is the oldest of three girls. Her parents sacrificed and worked together as a team to ensure Hannah and her sisters’ needs were addressed while Hannah received medical care. Her mother stopped working outside of home to stay with Hannah around the clock. Her father worked two jobs, nonstop it seemed, to support his family. Her sisters stayed with other family members.
When the true cost of the recommended transplant emerged, her parents were faced with financial obstacles that threatened to delay or prevent Hannah from receiving life-saving medical treatment. In 2016, a liver transplant costs, on average, approximately $740,000. And that was only the beginning. Even with insurance, which would have covered the cost of the transplant itself, her parents were still faced with significant expenses related to the surgery. Additionally, for the rest of her life, she would need follow-up care and daily anti-rejection medications, just as critical to her survival as the transplant itself.
On September 15, 2016, Hannah was placed on the national transplant waiting list. The next day, one of our patient services representatives received a call from LeBonheur Children’s Hospital. The call helped NFT to connect to Hannah’s parents and place the family on a path to acquire the financial help needed for the transplant to proceed. On October 31, 2016, Hannah was successfully transplanted.
Today she is thriving as a teenager, living her best life. She returned to school and spends time with her loved ones. She’s enjoying her arts and craft hobby now more than ever. As a teenager, she no longer plays outside with her friends, instead she likes to hangout at the mall or go see a movie just like a regular teen.
Anyone can register to become an organ donor at RegisterMe.org. Living donors and organ recipients can contact National Foundation for Transplants when they need help raising funds for out-of-pocket transplant-related expenses. We exist to help transplant patients through their most difficult times get to their most wonderful times. You can support their transplant journey with a financial gift.
