Freya was born August 4, 2023 to Hannah and Jarrod Parson, the youngest of six kids. Her natural, unmedicated birth was challenging but uncomplicated and beautiful, and everyone was so excited when she came home from the hospital.

However, at just 8 days old, she began bleeding from her umbilical stump which brought her to the ER and then an emergency transfer to Wolfson in an ambulance when the bleeding could not be slowed or stopped. She ended up bleeding out and going into cardiac arrest at Wolfson Children’s Hospital in Jacksonville, where she was revived and sent to the PICU for 4 days.

Right before discharge, Hannah mentioned light stools to the nurse, and GI was called in to evaluate. After some suspicious imaging results, exploratory surgery was scheduled; she was exactly two weeks old. The GI doctors were looking for signs of a rare congenital disease called Biliary Atresia (BA) which is a childhood disease of the liver affecting 1 in 20,000 newborns in which one or more bile ducts are abnormally narrow, blocked, or absent. This creates scarring of the liver due to bilirubin building up in the tissues. When the surgeon confirmed the diagnosis of BA, he went straight into the lifesaving procedure of the Kasai portoenterostomy, attaching a piece of her small intestine directly to her liver in order to create a drain for bile. Initially, she seemed to be doing very well and the surgery seemed to be successful. Her bile was draining, she was gaining weight well, and all labs were quickly and steadily improving.

Because the BA was diagnosed and treated so early, everyone was hopeful for the best surgical outcome. But around 4 months old, Freya started developing signs of portal hypertension and ascites (fluid build up in her abdomen), which is often what makes end stage liver disease turn quickly fatal. Although she was in and out of the hospital almost every 30-45 days for other very treatable issues, her labs were still looking good.

In June of 2024, Freya developed a fever of unknown origin. She could not kick it and was brought into the ER again for suspected cholangitis- an infection of the ducts outside or possibly within her liver. She was treated for about 10 days and discharged home with a PICC line so mom could complete the remainder of her antibiotics course. At the end of the course, she was given the all clear and everything looked resolved.

Less than 12 hours later, she was right back in the hospital again; the cholangitis was still there and she had quickly become septic. Her organs seemed to all be declining very quickly, so she was sent by helicopter to Advent Children’s Hospital in Orlando, FL to be under the care of the hepatologist and her future transplant team. As they fought to get her infection under control, all her latest imaging had confirmed that the bout of cholangitis had irreversibly advanced her disease, and her status had officially changed to failed Kasai patient.

The long, detailed process of transplant evaluation began while she was still admitted, and the Orlando transplant center officially moved to Freya to the transplant list on August 14th, 2024, just after her 1st birthday. Transplant was a hard mental switch for Freya’s family after being so hopeful that she would be part of the small percentage of children who are able to keep their native livers into adulthood. However, as the reality of just how damaging one bout of cholangitis can be, the family fully accepted that transplant had become a necessity, and everyone is now eager to see Freya through transplant and her new life with a healthy liver.

As of September 2024, Freya’s portal hypertension has progressed so much that it has the potential to create a life-threatening situation at any time or with any future bouts of infection. The strain of the advancing complications of BA are also affecting other organ systems in her body. It will be a huge blessing to her to have a new, healthy liver because living with biliary atresia even under “successful” standards usually means regular hospital stays and increasing medications to keep her stable, and an NG tube to help keep her weight stable and make administering medications easier for both mom and Freya.

Hospital stays have become par for the course for this little warrior. To date, Freya has spent part of 6 out of her first 12 months in the hospital. But the compounded medical trauma that comes with daily (and often multiple) pokes, prolonged and stressful imaging orders, long periods away from her siblings, and the way each stay affects her ability to hit developmental milestones without intervention are things we pray Freya can avoid with her new perfect donor liver.

Of course, the whole transplant journey comes at a steep cost to the family; both in time and resources. As does the potential for lost time and income for mom and dad at work. Jarrod retired from the Army in November 2024, and it will take a little time to get established in the civilian world work-wise, not to mention finding a position with some flexibility through what is a very fluid and unpredictable time.

Some of the anticipated and ongoing financial needs directly related to transplant and recovery:

• The cost of Freya’s medication, clinical visits, and supplements to keep her stable up until transplant.
• Travel expenses for appointments, procedures and hospital stays. Freya’s transplant team and center is located in Orlando, about two hours away from the family’s home. Fuel, lodging, and meals will add up quickly.
• Immediately after transplant, Freya will be required to stay in Orlando for about a month, if not longer.
• There is also the possibility of a handful of post-transplant complications that might require more treatment, surgeries, or hospital stays.
• There will be frequent and regular cycle days for the first year post-transplant.
• Freya is expected to need ongoing medication and clinical evaluations throughout her life.

Altogether, Freya is an affectionate, joyful, chatty, playful, music-loving toddler. She loves mice, fish, and watching treetops sway in the breeze, reading books, talking to family on Facetime, getting dressed up for church and special occasions, camping, swimming in the pool or ocean, and digging in the sand at the beach.

Although transplant doesn’t mean she won’t face future health challenges, it will be an opportunity for her to experience a more normal childhood and a blessing to watch her grow into a healthy, happy adult.