Isla
The day before Isla’s 3rd birthday was filled with joy including a special shopping trip, ice cream, and dress-up as an early celebration before her big day. Later that evening, after what seemed like a normal day, Isla complained of a stomach ache and asked to lie down for a nap. What came next was every parent’s nightmare.
Isla woke up vomiting blood—more blood than we had ever seen. After a frantic 911 call, she was rushed by ambulance to Jupiter Medical Center and then transferred to Joe DiMaggio Children’s Hospital in Hollywood, FL. During the ambulance ride, Isla received a blood transfusion due to the significant blood loss. That night marked the beginning of an eight-month journey to find the cause of her life-threatening condition.
Doctors discovered that Isla had severe portal hypertension, which caused multiple varices (varicose veins) in her esophagus. On her 3rd birthday, she underwent an emergency endoscopy and surgery to band the varices and prevent further internal bleeding.
After the procedure, we were told words no parent ever wants to hear, this condition was serious and extremely rare in a child so young.
After months of extensive testing, MRIs, a liver biopsy, and genetic testing, we finally received answers. Isla was diagnosed with chronic hepatic fibrosis, a rare genetic condition. She has two copies of the PKHD-1 gene, which caused her to be born with severe cirrhosis of the liver.
Determined to seek the best care possible, we consulted the GI team at Cincinnati Children’s Hospital. After additional testing and consultations, doctors recommended that Isla undergo a liver transplant. A liver transplant is considered a cure for her genetic disorder and the complications it causes, including portal hypertension, recurrent GI bleeding, and an increased risk of brain aneurysms. Most importantly, it offers Isla the chance at a healthier, fuller life…One she truly deserves.
On April 14, that hope became reality. Isla successfully received her liver transplant, with her dad as her living donor, an extraordinary gift of love that saved her life. In a moment that words will never fully capture, he gave a part of himself so she could keep hers.
While the journey ahead includes recovery, medications, and careful monitoring, we are overwhelmed with gratitude. This transplant has given Isla a second chance. A chance to grow, to thrive, and to live the beautiful life she was meant to live.
We understand the risks involved, and while challenges still lie ahead, we truly believe this was God’s plan for Isla’s life.
