COTA for Crue

Our Story

Crue’s Liver Journey – The Beginning

Our little man Crue was born on July 13, 2024. Sheli had a healthy, happy and uncomplicated pregnancy. After 8 hours of natural labor, it was determined that he would have to be birthed by emergency c-section because he would not come out on his own. After a slow start and a little help from extra oxygen, Crue was released from ICU after a 24-hour period. We had a perfectly fine little baby boy! Sheli became a first-time mother. Brandon finally got his first son. Rayne and Miley welcomed their baby bother with the most joyful and loving arms to be his big sisters.

Due to an extended hospital stay the pediatrician got more observation time with Crue and discovered his direct bilirubin was higher than normal. Upon discharge the pediatrician conferred with Children’s Hospital in New Orleans and made the call that they wanted him to be flown in from Thibodaux Regional Hospital to CHNO for further testing and observation.

At CHNO they monitored his direct bilirubin level as it rose. Their concern was that he could possibly have Biliary Atresia. Biliary Artesia is a rare liver disease that affects 1 in 20,000 newborns in the US. Biliary atresia is when the bile duct connecting the liver to the small intestine has no flow in order to release bile from the liver. The bile ducts progressively fibrose and scar over causing bile to back up in the liver and leads to progressive liver damage, cirrhosis, and ultimately certain liver failure. Biliary atresia has no known cause. Babies born with biliary atresia have a 100% mortality rate if interventions are not implemented immediately. There is a surgery to try and fix the issue called the Kasai Procedure, in which they remove the bile duct and connect the small intestine directly to the liver. Even with the Kasai the doctors explained to us there is only a 33% success rate of the surgery and ultimately most kids end up needing need a liver transplant at some point in their lives.

While at CHNO they performed two liver ultrasounds that were inconclusive. Because they could not diagnose for certain that it was biliary atresia, Crue was discharged. After a few follow up appointments and another inconclusive ultrasound it was still unconfirmed if it was biliary atresia. Crue was approaching six weeks old and the statistics say that the success rate of a Kasai procedure drastically reduce if not caught by eight weeks old. His doctor determined that they needed to perform a cholangiogram to inject dye into the liver bile duct and monitor the flow of the dye via x-ray. If they determine no flow and diagnose biliary atresia, they perform the Kasai right then and there. Two days later, August 23, 2024, we brought Crue in for the cholangiogram at CHNO. After a few hours, the surgeon came out to tell us that she confirmed that it was biliary atresia and the Kasai procedure was underway.

After a three-month wait his bloodwork numbers continued to climb and never started a downward trend that would indicate success. At that point, his doctor deemed the Kasai a failure and began to discuss a liver transplant with us. His doctor referred Crue to Texas Children’s Hospital in Houston, TX, as being the top transplant center near home, a 4.5 hour drive (6 hours when traveling with a baby).

After being referred to Texas Children’s for liver evaluation we arrived there on December 9, 2024, for a three-day marathon of appointments and testing. On January 2, 2025, we received the news that Crue was officially listed for a liver transplant with a PELD score of 13. In the meantime, there have been numerous hospital stays for Cholangitis (inflammation of the bile duct system caused by a bacterial infection) and Ascites (fluid in the belly). On January 6, 2025, during an MRI, Crue’s glucose level dropped to a dangerous level and the liver team determined that they wanted to put him on an NG feeding tube. The tube feeding would only be during his nighttime sleep period to keep him under feed so that his blood sugar level would not drop during his long periods of sleep. On January 27, 2025, during a routine blood work check Crue’s glucose level was low again and the liver team decided to put him on a 24/7 continuous tube feed to have a constant regulation of his blood sugar level.

The liver team petitioned for additional exception points to Crue’s PELD score and on January 23, 2025, the exception points were approved and his PELD score increased to 31 (40 being the highest score). So until transplant we live life on pins and needles just waiting for the phone call at any moment to get to Houston immediately for transplant. We pray in the meantime that he continues to feed well to continue his weight gain and encounters as minimum of complications as possible. We try our best to keep a positive attitude. The level of prayers, comfort and support we have received has been a blessing.

As the doctors have told us, a liver transplant is not a cure, it’s a lifelong treatment. Crue will have to take medication the entire remainder of his life and will be immunosuppressed due to the medication to keep the immune system from attacking his new liver. We are thankful for the COTA organization and their dedication to share their decades of experience with families of children who need transplants. We obviously did not plan on any of this happening and truly believed that we would have a 100% healthy newborn baby. The financial toll this long-term medical crisis has and will continue to be overwhelming and something that will continue with Crue even as an adult.

Please consider donating to COTA in honor of Crue to assist with his lifetime of transplant-related expenses. We welcome any generosity from our community and we thank you with our whole heart for your kindness.

The Children’s Organ Transplant Association (COTA) helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support. COTA is the nation’s only fundraising organization solely dedicated to raising life-saving dollars in honor of transplant-needy children and young adults. 100% of each contribution made to COTA in honor of our patients helps meet their transplant-related expenses. COTA’s services are free to our families, and gifts to COTA are tax deductible to the fullest extent of the law.