In memory of Lily Shelton
With hearts full of both sorrow and gratitude, we honor the life of Lily Shelton. Lily passed away on Sept. 8, 2025, after two courageous years of defying the odds of a rare diagnosis. Though her time here was brief, every day she shared with her family and community was a miracle — one that touched countless hearts and left a legacy of hope. Her story will continue to inspire, reminding us to treasure each day as the gift that it is.
IN JUST two years of life, Lily Shelton has brought more joy and hope to those around her than those who have lived for a hundred years.
At just 2 years old, Lily’s life has been one of struggle and uncertainty. But it has also been one of determination and breaking barriers of a rare diagnosis that has been with her since before birth.
Lily has what is known as Fetal Neonatal Alloimmune Thrombocytopenia or FNAIT.
According to the National Organization for Rare Disorders, FNAIT is a rare immune disorder that occurs when a baby’s platelets are attacked and destroyed by the mother’s immune cells. The reaction happens when the baby’s platelets are recognized as foreign, prompting the mother’s immune system to develop antibodies against them. This immune response can arise when the mother’s blood is exposed to the baby’s blood during pregnancy or childbirth. FNAIT can affect a woman’s first pregnancy as well as any that follow.
For Lily’s mother, Jennifer Harrison, this was her second pregnancy and one that came as a blessed surprise. However, at 20 weeks, she said an anatomy scan of her daughter would reveal swollen ventricles in Lily’s brain.
After several attempts at a diagnosis, Harrison under- went a fetal MRI at 34 weeks pregnant. The scan revealed that Lily had experienced a brain hemorrhage around 20 weeks in utero, which led to swelling in the brain’s ventricles and halted further development.
“With this condition, its cause was due to a blood plate- let discrepancy between me and Lily,” explained Harrison. “Her blood platelets crossed over into my uterus, and my body built up antigens that fought off the blood platelets. Blood platelets in our body create blood clotting and scabbing and things like that, so with low blood platelets, it made the fetus more susceptible to hemorrhaging. She began to freely bleed, and her brain just stopped developing altogether. We did not have a diagnosis until four days before her birth. We had a scheduled C-section at Vanderbilt, and Lily was born with severe petechiae due to low blood platelets. She had to receive two blood transfusions while she was in the NICU.”
Harrison said that with the joy of her daughter’s birth also came the reality of Lily’s condition.
“They told us that there was nothing they could do,” said Harrison. “Her brain was severely underdeveloped; she does not have a cerebellum at all, and her brain stem is small and displaced. Our brain stem creates a lot of things that function in our body, like our breathing and our heart rate, along with everything we do functionally.”
After a two-month stint in the neonatal intensive care unit, Lily was sent home on respiratory support using an AIRVO machine. Doctors told Harrison the machine would likely be a lifelong necessity. She was also diagnosed as hydrocephalic, a condition involving a buildup of fluid in the brain’s ventricles. This means fluid doesn’t flow or get absorbed the way it should, causing her head to be larger than average.
In June 2023, because of Lily’s condition, she was put on hospice. However, hospice wouldn’t keep Lily’s family from having hope. Harrison stated that some hope would be discovered after Lily’s AIRVO machine malfunctioned, which led her to uncover something about her daughter’s willingness to fight.
“We were forced to use an oxygen tank while we waited for a technician to come from Nashville. Lily sat on just regular tank oxygen, which told us maybe she’s capable of a little more than what we’re giving her credit for.”
Harrison called it a miracle and then went to work on trying to help her daughter fight.
“I slowly started working with Lily and weaning her off oxygen. She showed great progress. This led to us seeing neurosurgeons at Vanderbilt and discussing the possibility of having a shunt put in. It’s a device that would go from her brain down through her neck and help to drain spinal fluid for her. The surgery is still skeptical because Lily is still a hospice patient. Our family leans heavily on faith, and we pray about it, and we just have to trust that she’s not only still with us, but she’s slowly coming down on her oxygen support on her own.”
While each day is uncertain for Lily and her family, Harrison added that each day with her daughter is a gift and a chance to fight for another day and to advocate for her daughter’s condition.
“Her story is just one of a kind, and we are just grateful for the opportunity to be able to share and be an advocate for Lily and her condition,” said Harrison. “They told us when she was born in April 2023 that we may only have four to six weeks with her. And needless to say, on April 4 of this year, we celebrated her second birthday. She’s a miracle, and she has fought every step of the way to continue to thrive. We will continue to do what we can to help her fight and continue to thrive.” GN
